Pictures of my Hidradenitis suppurativa.
So now you see what we who have HS have to suffer through. The above images are apart of my life everyday. My HS is so advanced it never settles. I have flair up’s every single day since I have it in so many places. I honestly can say i have no had a pain free day in the last 10 plus years.
11/16/13 Below is a link to youtube that will show you some of the drainage. It is gross fyi.
Wow seeing your pictures and reading this hits so close to home for me it made me seriously want to cry. I too suffer from Hidradenitis Suppurativa. It is absolutely painful and embarrassing. I’ve had it for so many years i really don’t remember when i first got it. I haven’t had any bad outbreaks like yours in a while though but i do get them golf ball size at least once a month. Being a woman its so very embarrassing when i get them under my breasts, it makes me so self conscious.
Thank you for the nice comment. I totally understand what you mean, for me it is very embarrassing as well. It is hard to find new relationships, etc. I do try though and will continue as best as I can. Most of my close friends do not even know the extent of it because I am to self conscience to show them.
I HAVE A 23 YEAR OLD GRANDDAUGHTER THAT SUFFERS WITH THIS EVERY DAY. HER’S IS SO BAD SHE HAD TO QUIT WORK AND MOVE IN WITH ME AND HER PAPA. SHE IS IN PAIN 24 HOURS A DAY.IT IS SO BAD SHE HAD TO HAVE 80% OF HER RIGHT BREAST REMOVED.SHE HAS 2 -10 EVERY DAY OF HER LIFE. WE WILL BE PRAYING FOR ONE ANOTHER.
I suffer to an right now I get zero help in the way of compassion for this pain I in I am told to take melexocam an Tylenol or ibuprofen I am in so much pain I went to Legacy Emannual an was treated like a drug addict I was told I had Mersa no tests no blood draw an given antibiotics this is so frustrating so I am so very sorry to anyone who is left to deal with this I am at a breaking point I feel suicidal at times
I can say that I have dealt with this painful disease since I was 6 years old and the doctors back then said I was allergic to my deodorant. I didn’t get properly diagnosed until I was 23 and then had my first of 72 surgeries I had 189 boils total between both armpits so I have dealt with that pain since childhood. Couldn’t play sports because of it, I am 41 years old now and I can say that I contemplated suicide as well but I knew I was here for a purpose for everyone reading this that goes through this pain too which is just as much mental as it is physical just know it can get better I can say I have gone from having a surgery every month to now me not having had a single surgery for that in almost 4 years and honestly it has been nothing but God that has stopped me from needing these surgeries honestly cause none of the crap they gave me ever worked I have to go to pain management every month because I am on pain killers but that’s because I also have osteoarthritis and fibromyalgia as well I can say that honestly going to therapy helped me cope with it a lot as well. I wish all of you well on your HS journeys
Hi! Im new to this blog. I suffer from this ailment myself and it has gotten very severe over the last few years. Your photos are very real to me. Thank you for sharing your story.
Thank you so much for your comment, it truly mans a lot to me.
Thank you for sharing your story. I hope you can find a remedy to help get your cysts under control. I have only had this disease for a short time, but I’m getting really sick of it!!!
Hello and thank you for your comment and checking out my blog.
Oh wow! Can I ask you a quick question? I was wondering how you came to the diagnosis of hs, I mean, were you ever tested for MRSA, and could you tell me the difference. I have actually had MRSA in the past, and I have struggled with something else, that has gone undiagnosed as well. what it is is these boil-like bumps that I get under my arms, not actually in my pits, just below them. Now, I have an identical “boil” under my left breast, and being a woman, this scares the crap out of me lol. I have actually been told by a friend that it looks to her and sounds to her like i have hs, I don’t think many doctors around here are familiar with hs, so I think alot of mis diagnosis goes on.
Hello thank you for your post it means alot to me. I was diagnosed about 7 years ago from the Mayo Clinic in Arizona. Yes I have been tested for MRSA and I have never had it. I was just in the hospital for a week this past December they again tested me and it was not MRSA. I knew it was not but they wanted to check to make sure they did not have all of my medical records. Yes I would bet it is HS, it is more common in women than in men, and it took me forever to get diagnosed correctly. Please let me know what you find out, and if you ever have questions please feel free to ask.
elc, doctors can give you a dx of HS ONLY IF YOU TELL THEM the symptoms & poroblems you have. Many of us, no matter if it’s men or women, feel shameful of our HS lesions & flares, & unless you show the doc or give them a list of reoccurrences of symptoms can they even think to check for HS. While your friend means well, you need to be seen by a doc ASAP when you develop these “bumps.” I hope you never have to suffer needlessly due to fear of shame as so many HS patients do, so the next time you get a new “bump” call your doc immediately & request an appt. Don’t be shy about telling the nurse or secretary what you are calling about, as they are not mind readers & unless you express the urgency to be seen, they’ll schedule you a few weeks later & you’ll wind up at the office with nothing to show. Good luck & for your sake: I hope you don’t have HS but something more easily treatable.
Wow!!! ! I wonder if HS is worse in men than women? I just get HUGE mountainous bumps in my armpits & my last flare gave me a 3rb boob, about a B cup in size which was new to me yet crazy painful & caused a sinus formation & still hasn’t closed completely. When it finally gave way, it literally soaked the top 1/2 of my featherbed (which was dutifully discarded without much fanfare) & the smell of the pus made me ralph. I’m curious to know if you’ve looked into that whole “primal” diet thingy or to eat a basic/bland diet & add 1 by 1 other foods to see if you have a food trigger? Mine is all hormonal & really, compared to your case is a walk in the park. Also, have you tried helio(sun) therapy? I know it would be kinda hard to lay out in your yard & “letting it all hang out” but I would often have great healing, shortened duration & less scarring when I’d let my armpit HS “breathe” & get some sun. Also, swimming inthe ocean did fantastically too. I wish you the best & hope you’ll soon find relief.
Thanks KC for sharing. Anyone else who suffer from this ailment found anything that works to curb it or have you found any things that you believe trigger it?
I’ve found that nightshades, and eggs set mine off sometimes, so I stay away from potatoes, tomatoes, peppers (pepper seasoning, bell peppers, spicy peppers, anything with pepper is a no go) and of course eggs. Also dairy makes my flare ups worse, so maybe cut these things out an see what it does for you? It can’t make it any worse.
I have HS, and the depression it can cause is unbelievable. The cysts under my arms are the most recurring, and I’ve had a pilonidal and a severe, recurring clitoral cyst surgically removed. The pilonidal (hollow of the tailbone) has not returned, and it has been over 6 years. Luckily they did not make me undergo the clitoral cyst removal awake, although they did open up more times than I can count on two hands in that manner. I have been repeatedly tested for STD’s and MRSA and the results have always been negative. Doctors who are unaware of this condition, and that lack knowledge of how to properly treat – or get you to someone who does – heightens depression.
I’ve had this issue for over 10 years and it began when I hit puberty. I’ve kept diet and stress logs and I feel very strongly that greasy foods, sugar, and a variety of processed foods impact HS significantly. When doctors first diagnosed me, their only recommended treatment was to surgically strip the glands, which would be needed repeatedly as new glands become effected with cysts and abscesses. Now, there are long term treatments involving lengthy bouts of antibiotics, but even that will not provide us with the outcome we all hope for; one day we wake up with no pain.
From a personal experience, weight gain also takes its toll on this issue, but I’ve nothing medical to back this up. When I had lost weight, HS was overall more bearable.
I have four recommendations that have made this more bearable for me.
1) Get antibiotics. If there’s pain there is infection. If there’s smell, there is infection. The antibiotics will not always work, and if you can, seek an infectious disease doctor. They will take a sample of the fluid and *find* the antibiotic that is right for *that* cyst. As a warning, some of these will really suck. Your body and the infections will get used to some of them along the road, and the doctors will have to prescribe different ones, and multiple at a time. If the cyst is that large *please* see your doctor. Please.
2) Sterilize, sterilize, sterilize. Avoid touching, scratching, or otherwise making contact with a cyst with your hands. There are 44 or more different kinds of bacteria underneath your fingernails. This makes a bad situation monumentally worse even if you don’t realize right away. Or maybe, it was bad enough to begin with, so why bother? Your body is CONSTANTLY trying to heal. You have to go the extra mile.
3) Know your nutrition facts. Yes, this is that bad. Getting an extra amount of vitamin C and E, and ensuring you get vegetables in your diet do help. It is by no means a cure and the help may be marginal but when you’re in this much pain all the time, any amount of help you can give your body is key. I highly recommend exercise and weight loss. Sugars, and alcoholic beverages also hinder the healing process. You have to look at it from the stand point that you have a continuous wound and you have to be conscious of how to see a wound heal.
4) Get extra sleep. Your body is continuously trying to heal itself, and this is a constant, awful experience. This helps alleviate some stress, and gives you the tools you need to deal with the stress and depression that accompanies the ailment. I’m not advising to sleep 12 hours a day, but any little bit more you can get will help. If nothing else, it IS scientifically proven that after surgery you are more tired BECAUSE your body is trying to heal and that is why they recommend rest afterward. Once an abscess opens, consider the damage to any healing that may occur, *will* cause. You risk tearing skin and widening the area with too much vigorous activity directly after something opens up. Life isn’t really conducive for this specifically, but I’m not making this up, I’m living it.
We need more websites like this. There needs to be a place that people can go just to know they are not alone. I went from being an honor student in high school with perfect attendance, to having college professors tell me that I was not going to make it in the world because I was constantly having to seek medical attention and miss classes every time I had a cyst that was so inflamed I could not walk, sit, stand, or lay without vomiting. I wasn’t able to tell them what was happening and they wouldn’t have understood anyway, but according to them I partied too much.
I am still trying to find a doctor appropriate to see about this. Dermatologists don’t want to treat the issues associated with the pelvic region, and OBGYN’s aren’t really tailored to help with the armpits and back. If anyone has more information in that regard, I’ve yet to have a doctor recommend someone who could treat the condition rather than the individual locations.
Hello, thank you so much for your comment, it truly means a lot to me. Right now as we speak I woke up today and everything is flared up. Bad day. Armpits especially. I just started with another new doctor and he does not know much about it either.
Plastic surgeons, mine is very understanding and very very helpful he sedates me so I do not have to endure the pain or seeing him drain the tissue and treats all my areas I am very lucky to have him though he cant keep it from scarring he does his best and has removed the entire tissue in some places where it reoccurs the most which has been very helpful
Hi, it’s been awhile since I’ve been on this site. I’ve been having some episodes and it’s really starting to piss me off… pardon my language, but it’s insane doctors are stumped. There has to be a cause.
We all can’t be suffering the same exact thing in the nearly all the same places coincidentally.
I want to know how many people out there also have HS.
I want to know why more studies haven’t been done, more websites aren’t available.
I want to know what triggers it and how to make it go away.
It’s starting to isolate me from the world and it’s really depressing.
As like with Chron’s disease, seems nobody knows the cause. Ah the diseases of our modern civilization. Make one to wonder and question the medical industry as well as the food industry, which we all know money is on first place unfortunately.
I do have a bunch of stomach problems as well as eye problems. They mayo clinic thinks it is all related to my stomach problems.
Support Group: https://www.facebook.com/groups/265304860250617/?ref=ts
Thank you so much for your video post.
I came across your story tonight as I was having a sleepless night worrying about my HS surgery coming up on November 6th, 2012. Your pictures bring me to tears… It is a mirror image to what I have been going through for the last several years. No one understands… The pain, the embarrassment, the shame, and sadness. My prayers are with you and everyone who struggles living their life with HS. I am stage 3 as well, left axillary, bilateral groins, and bilateral perineal. I am 29… Married with a daughter who will 2 this week. I pray everyday… and hope that I can continue to have the strength to fight… If not for me, for my daughter.
Thank you so much for your post. You are correct no one understands. It is impossible to tell people how we feel. They think I exaggerate, etc. Also please keep me up to date on your progress.
Well, it’s been 11 days since my surgery. I saw the surgeon yesterday… I’m having a lot of pain in my left arm. My left underarm incision has a 9.2″ length, and 2.5″ depth. Not very wide, but it is causing me a lot of grief. It is an open incision…. They said if they stitch it up it has a likelihood of reoccurring. Thus, it has to stay open to get all the infection out. Which means, it has to be packed once to twice a day, My poor husband passed out at the surgeons office 48 hours post op when the surgeon tried to show him how to change my dressings. My mom was on the brink of fainting also when she tried to assist too. Luckily, home health nurses were able to come out and help. Now, 11 days later… My husband is able to change my dressings. After I saw the surgeon yesterday, last nights dressing change was extremely painful. My daughter ran into our bedroom saying, “Mommy’s crying”… She’s two. She almost started crying… my heart was broken. I don’t want to put her through any of my pain and suffering. I have had my family take some pics… They are so hard for me to look at. Makes me feel sick to my stomach… I hope I never have to go through this again. Pain meds help, but my body is tired. The holidays are approaching, I’m currently on short term disabily and hope to return to work in a few weeks. I hope I can make it… I’m pretty down, mentally and physically exhausted.
Wow thank you so much for the update. Please keep me posted often. I hope you are feeling better and have a wonderful thanksgiving.
P.s. Not sure if anyone has undergone Remicaid infusion therapy, but it has really helped my HS in the groin area. 500mg every 4 weeks seems to allow me to live a semi-normal life… The Dr.’s are trying every 6 weeks, but I notice flares at week 4. Still trying to work out the dose and frequency. I’ve tried everything… Several antibiotics… Clindomycin, rafampin, monodox…Even enbrel and humira. Been on prednisone for over 2 years, have had a multitude of steroidal injections, you name it. Remicaid has been a good band-aide. Not a cure, but stops the drainage and lessens the severity, and new cystic formations. And… My insurance covers it with a diagnosis of HS. I hope this information can help someone struggling with the hardships of HS.
Thank you so much for your post this truly means so much to me.
I tried Humira and it was not helpful!
Can not afford biologics without assistance programs to help with cost. I got Humira for free. I was on it for Ankylosing Spondylitis. Many say HS is autoimmune in nature. I’m inclined to agree as I’ve got a whole list of Auto immune diseases. Unfortunately Remicades assistance was not adequate for me to afford it. I’ve plans to try Cimzia next. But it is my understanding these biologics are just now being trailed for HS. And with very mixed results. For me Humira made my HS worse?
Lisa have you started Cimza? If so has it worked for you? I see my dr Friday and that was the next drug the dr was going to try. I’m so glad I came across this site, it made me realize I’m not alone & there’s someone out there that understands what I’m going through. This started about 2 years ago with a boil like bump in my inner thigh that went away and came back months later and that’s how it went until October/November when the bumps came and never went away. Now the bumps have gone up to my vaginal area and it’s painful. The open wounds and the daily never ending drainage is something else but nothing compared to the pain and embarassment I go through. I’ve been have a hard time dealing with HS lately and today was full of tears but I came across this site and just writing this makes me feel better. Thank you ALL for sharing!
Thank you so much for sharing.
Thanks so much for sharing your pictures. My father got HS on his nipples all the time. He passed away at 46 yrs old, 9 yrs ago. I myself a 35 year old female, also get it BAD! All on my inner thigh (mostly right leg). I have had 14 operating in 10 years due to these. The last one was May 16 1012. With it tunneling 2 3/4 inches deep. Of course as you know, they hurt, and then the doctor puts packing in there that is 50 times worse. I to have picture’s that I would mind sharing. I had the doctor cut the tracks, and have had no outbreaks since. But mine too grew over night, like crazy. Thanks so much for sharing.
Thank you so much for your post. I understand your pain. I have so many infected places there is literally no good skin to do a graph. Hopefully more research goes into this so we can find a cure.
Hi, to all suffers from hd my heart goes with you. I’m on the discovery if I got this condition. For what I been studying about it, it seems I might have this too. I had had already a minor surgery about 3 weeks ago to drain a very painful cyst under my right armpit that first I thought it was an ingrowing hair. It happens just after coming back home from a holiday in Majorca, which left me assume perhaps my razor blade was bit old. After thinking every night the reasons of this outbreak I can only think of my over indulgence at the hotel of the foods I don’t usually consume, like pork, dairy, wheat, sugary desserts and alcoholic drinks. Somehow something tells me this was the big detonator.
I have a childhood history of consuming heavily processed food, tons of sugary products, dairy, wheat, fried snacks and meats but also the good old vegs and fruit. Im 34 now, but fortunately I adopted a healthier diet 14 years ago when I got pregnant with my only one child. My weight has been always pretty stable thanks to my dad’s body constitution, I’m weighting 58 kg and I’m 1,68 mts tall.
Im posting all this personal info with the hope to give a more broad lifestyle history so we can have more information available to compare each individual case and then perhaps find a pattern for a better clue to what causes HS.
My biggest study discovery at the moment is there is a link of Crohn’s disease and HS. But the scary bit is the relation it has with PARA. Please take a look at this:
http://www.crohns.org/media/index.htm – also http://en.wikipedia.org/wiki/Mycobacterium_avium_subspecies_paratuberculosis
I come with the idea that dairy could possibly being causing flare ups. Please have a little think about this and if you could share about lifestyles, diet, etc I’m sure that will help us a lot.
Will keep updating…
Hello thank you so much for your post. Yes please keep me updated with everything you can. Myself I have tried diets food changes tons of meds. Even moved to a different state with a different climate. In my case nothing has changed it just gets worse. I am learning alot more to deal with it and just realize this is a part of my life.
Hello there. Thank you for sharing your case. Bless you!
It will be great if you could describe a bit more about your childhood habits to adulthood lifestyle. What you actually do for living? Do you work? How do you control the psychologycal distress that hs has cause to you since diagnosis? Do you excercise? Apologies if seems like a interrogatory but if not much research has been undergone those with the condition could do a little bit, like you do actively with this blog 🙂 Well done you! Sending a big healing hug to all.
My Childhood I was very athletic. Right now it is impossible to work. From the pain to the smell. The psychological part is the hardest. The not dating often sucks really bad. I do exercise but I could do more. But even in my early 20’s I was a workout machine and still no differences. Even then I was on a chicken and tuna diet for 2 years and still the same. This started for me when I was 16. I was thin in shape, etc. But I have been doing some family research and in my case both my mom and dad had HS. My dad died at 61. But they are now thinking my case is so bad because both my parents had it. So it is so hard to say. I turn 41 Sunday so I have had this for a long time. And as we speak I am flared up right now pretty badly. Thank you again for your comments and please keep in touch.
Hi……..I think you’re a handsome man……and I would date you…..I was looking up cysts on the scalp…I have a few of them that are getting harder to cover up with my hair and stumbled on your posts……..I think all of you are wonderful amazing people….I think its got something to do with Khrones and the immune system and hormones reek havoc on so many aspect of everyones lives as well……I donate plasma twice a week for people who have immune issues slash diseases and can’t make it without their medications……..we all have to do our best to help our fellow human beings any way we can……research needs to be done on HS…….My son may have Krohns disease or irratable bowel syndrome…..please let’s raise awareness of how the digestive tract and health is vital to our immune system…….food is being altered and its killing us……
Wow thank you very much for your post.
It shocked me when you said its related to crohns disease because my mother has Crohns disease. No one in my family has HS so I always questioned the whole “genetic” thing. But now that you say its related to Crohns dieases, I cant help but wonder. Im goin to do some more research on that. Thank you for the information.
I can tell you I am a perfect case to prove it has nothing to do with diet, weight, genetics, smoking, autoimmune, or chrohns.
Had since I was 11yo….when I was borderline anorexic n didn’t smoke. My parents don’t have It. I didn’t have any autoimmune disease that exposed me developing hs. I don’t have chrohns or any stomach or intestinal issues. Dots not diet either as we tried everything under the sun while I went undiagnosed for 5 yrs, not properly diagnoses for another 7.
after I was diagnosed stage 3 august 2011, I was in surgery 5 days later. Which failed. Husband lost his job for taking care of me after surgery, we had to move to a state where there was work, unfortunately have had no care for my hs since Aug 2011. Searing, agonizing pain since. Actually had the last 3 Weeks before thus last week with only a few flare ups. Then last Saturday hit hard. Have dealt with a total of 64 since last saturday, most have been lanced, drained and packed by my hubby, thankfully. I currently have 12 on my head, 2 on my neck, 3 under my left arm, 1 under my right, 1 on my left leg next to my groin, 4 on my groin, 3 on my right ass cheek and 2 on my left ass cheek
Thank you so much for sharing. I wish you the best.
I’m 58 years old and I remember exactly when I was infected. My doctors have been, and are useless when it comes to this PLAGUE. I had no previous problems with acne or boils in the groin area until I had my first child. Before childbirth I was shaved in the hospital. I just KNOW the shaving kit was infected because a few weeks after my child was born I got the first boil. Then another……and another. Yes, my groin area looks like yours. Yes, the draining has been constant for years now.
I’m glad I’m old and alone now. I don’t have to hide anymore. I don’t have to beg off intimacy because “I’m pretending to be in pain”. What has not improved yet is that I DO have to work and can not take off when my boils decide to hit me all at once. Sometimes they are so bad I think I have a fever. The glands in my groin area swell up because the boils are in such close vicinity.
At this time I am doing my best to control them with constant application of salicilic acid. The over the counter remedies are not strong enough, so I am resorting to Wart Remover (20% salicilic acid). It burns like hell for about 20 minutes but I’d rather take that burn than the pain of another tennis ball.
I am so glad I found you, although I wish I was the only one going through this. I’m “used to it” by now. My personal calvary. I didn’t know there were so many of us.
I know exactly what you mean. Dating is nearly impossible. Just yesterday as a matter of fact the smell was about 10 out of 1-10. I hate the embarrassment from that.
Hi, I think at one time you wrote about having low testosterone levels I believe… were you able to find out more about that? I’m convinced this ailment results due to one or all of the following:
Hormones
Greasy Foods and Dairy
Being Overweight
Skin to Skin friction
Because it all started for me when I hit puberty more or less at age 16, I’m leaning towards the hormonal with diet and skin to skin friction all coming into the equation as well.
Antibiotics don’t cut it. Topical lotions do very little as well. I have found warm compresses help in it’s early stage. Sometimes one will start and I’ll just keep applying warm compresses and let the area breath and sometimes they just diminish.
I have been on Antibiotics for 10 years daily. I know you get immune but if I do not take them wow. Last year December I tried not taking them after the 4th day I was in the hospital for a week. I did move to a warm climate from Chicago to Phoenix. No change at all exactly the same.
Hi Carlo, I don’t remember when I joined your blog, but wow. I too have hs and know the pain first hand. I’m 39, dx’ed 3 years ago, and my outbreaks are primarily on my labia and groin. I’ve been dealing with it for 20 years and no one had any idea as to what it was. My family doctor pretty much thought I had a STD. What a moron. Anyway, I so appreciate your openness to share. None of my friends or family “get it”. *hugs* Melissa
Seriously I can totally relate. NO ONE understand ever! When I tell people how much pain I am in I feel they do not believe me ever my DR. My new DR. will not give me any pain meds at all and man it sucks. Also I had a girl ask me if I had aids once. I tried explaining it to her and she is like are you sure it not aids. I was so pissed. Some people just do not care or understand.
hey im trying to work out what i have on my neck, it looks a bit like your photos but way less also it looks more like cystic acne like it has been diagnosed, but it constantly
leaks pus just like yours how ever it stop because the puss hardens then preventing more puss from coming out. im just wondering if this happens to use i only have it on my neck and im 16.
Hello thank you for your comment. From what it sounds like to me is you may just have a cyst. You only have one correct? Maybe your DR. can give you some antibiotics, if so it may clear up. Thanks again for your comment and keep me updated.
Mine started at puberty (around 13) and just in groin. Tried Ultravate at that time daily for 3 months. No one knew what it was.
I lived with it until I had a bad cyst in my right armpit that had to be cut open and packed. My ARNP diagnosed me with folliculitis (ingrown hair follicle) and treated with short term antibiotics.
Then I lived with it again. It scarred badly and I was embarrassed to wear sleeveless shirts, or swim suits in public.
Then I got a staph infection that rooted in my sinuses. Turned to MRSA. I finally got to see a regular Dr. he diagnosed me with HS at 37. He treated me with different antibiotics over 6 months. (Bactrim, Myacin, Cipro) then when that worked a little, but not long term to treat my open sore in my left armpit, he refered me to a dermatologist.
I went monthly in the beginning. I have a medication regime that keeps me from new ones or at least no big ones. I wash with Hebiclense, use Clindamyacin gel twice daily, oral Aldactone (50mg) twice daily, Nystatin powder (instead of deodorant) or Certain Dri when I have to use deodorant (not a deodorant but anti persperant) I am not supposed to shave, but I sometimes break that rule.ti
I still have the one draining for the past year, but no new big ones. I think it is finding the right combination that works for you. I did have it drained and injected with steroids at my last app. (It didn’t work).
My husband is supportive and my kids are also. It’s more my demons not them. I was in a wedding with a strappy dress as a bridesmaid and was not looking forward to having to remeber to keep my arms down the whole time. My friend the bride, just kept telling me she wanted me there and to just be me not my HS. I had a great time.
I would love to wear tank tops in the 100+ degree weather of Kansas, maybe this year I just will…..If they don’t like my scars….screw them…it’s hot. Lol.
I do not have picture of my areas but have gotten them under arms, under breasts and on sides of groin. Blackheads, tunnels, weird stinky white bumps and pustules. I spend so much time inspecting and picking. I want that time back. Your case is worse then mine, you give me hope to stay strong when I can’t raise my arm.
Thank you so much for your comment and checking out my blog. I understand everything you are going though. I have so many scars it is so embarrassing for me. But now I am at the same point I have had it so long I have to try and live free. I do not care what strangers think anymore. I just hate the smell! lol.
Alicia, I can so relate to your post. I too have avoided tank tops and strappy dresses because I was ashamed of my armpit scars. Honestly, when I think about it now, who the hell really cares… they’re armpits! LOL
I tell myself to think of the people who are missing limbs… it makes our armpits issues pale in comparison.
Take care
Thank you so much for sharing your story. I have heard about experimental surgeries that involve skin grafting for stage 3–do you know if that is available yet? Would you be willing to try it? What else exists for stage 3?
Hello, yes they are interested in this for me. I have a surgeon that is ready, but to ANXIOUS. My skin has HS everywhere so it may be hard.
I was diagnosed with hs about 5 years ago but started getting the boils around 15-16. I am now 34. My mother had boils/cysts also but says I have it worse–maybe her case diminished with age? I have scarring and reoccurring boils under my arms and the insides of my legs. Sometimes I get them on my bikini line also, which makes wearing underwear more painful so I resorted to using good band aids and wider ones to cover that area and the insides of my legs. They feel worse sometimes when rubbed by pants or jeans without using band aids. I currently have open sores under my breasts and in my cleavage area. I use gauze pads with ointments like Neosporin daily and invest in bras with no wire-Victoria’s Secret, ladies. They do hurt and I make it worse when I wash there. Sometimes it’s itchy there plus I guess I’m neurotic about getting it clean to help it heal but then I make them bleed. I know what you all mean by it being hard to date. I have hid them from guys I’ve dated but since I got the ones under my breasts, only my son’s father really found out when we were intimate but we were together when I had them really bad after my son was born in 1999. So bad I wore long or 3/4 sleeves in the summer for about 2-3 years before they got better. Somehow, I think it was the change in environment and diet with my mom. I have been with another guy since my ex but I hide it from him by having sex in the dark (maybe candles), positions where he doesn’t have to see my breasts (or scars for that matter), and wearing my bra or a nightie to bed if I can. Of course, if the ones on my thighs flare up, I make up an excuse. It’s embarrassing. I recently had another boil under my right arm that grew to the size of a small egg. It was so painful and I ran a slight fever but I couldn’t afford to miss work. It hurt to drive and lord help me if I hit a big bump…As it got bigger, I started taping gauze pads around my arm just in case it burst while at work. I was still afraid of the smell getting out. I prayed to God over that weekend that it would burst before Monday. But it didn’t and I sat through my evaluation with my supervisor in pain…I have avoided seeing another doctor because I’ve gone to a general surgeon, who referred me to a plastic surgeon (I didn’t go), and I’ve had a dermatologist suggested to me. Which might be my next stop. But I wondered if it’s a vitamin deficiency or an effect of getting off birth control. Meanwhile, I just deal with it and try not to let it stop me too much. I work almost 50 hours a week, just graduated from college and now, starting a master’s program. I hope to have a cure for hs, too, but hope that last part is encouraging to others, at least.
Hello Everyone,
My painful journey started right after I started my period. I was about 13 years old. I got a pea sized bump in my right armpit. My mother thought it was just a pimple but within a coue of weeks, it grew to the size of a quarter. One night I was in excruiating pain as it was begining to open up. It was the worst night as a pre teen. It drained & as young an un educated as I was, i would just wash it with rose scented soap & cover it with a bandaid (ive learned now that its better to let the soars “breathe”. As the years went by my right armpit got worse & it spreaded to my left armpit. They are both pretty infected. Id say im at stage two at this point. I started to give up on this disease when i was 18. I had already seen 5 drs & all they would do was prescribe me different antibiotics. None of them helped at all for me (no surprise there). I started googling my symptoms & finally diagnosed myself with HS. I started picking up natural remedies from different ppl. Like turmeric powder & hibiclense. I have not tried those yet but im willing to try anything. Once I hit 22, I went to my obgyn who delivered my son. She suggested I use antibacterial soap (the gold dial bar). So I started to clean them twice a day with the soap & every other day I put antibacterial cream on them. This has definitely helped. It hasnt healed the soar I already have BUT when I get a new soar, They heal & go awa & I think its because of what ive been doing. i rarely use deodorant but when I do use some, I use the natural mineral crystal spray on deodorant. Ot doesnt irritate my soar or make them worse & it totally defeats the nasty smell. I also live in Phoenix Arizona so you can imagine how hot it gets here. I sometimes get them in my inner thighs as well but as soon as I get one, I use the soap & cream & they heal & dont come back. Maybe this will work for one of you? Im not fully cured but I believe if you start the right regimen before its too late you can keep it from getting worse. My mother has crohns disease so I wonder if that has anything to do with me inherating the disease? I am now 24 years old. It will be 11 years that ive been living with this disease. I dont believe that weight has anything to do with my HS as I have lost & gained weight & it hasnt made a difference. Thank you all for sharing your stories. It makes me happy to know I have people out there who understand my pain.
I’ve dealt with skin issues for the better part of my life. I’ve been treated with Acutane for adult cystic acne – once in my twenties and again in my thirties – I’ve had one pilonidal cyst and I was just diagnosed with HS after many years of dealing with flares of painful lumps and nodules in my genital region and in the crease where my thigh meets the trunk of my body. I asked my GP and my GYN if the cause of these pus filled painful cysts could be HS – I was figuratively patted on the head and told not to try to diagnose myself by looking at web sites. Yesterday I was sent to see a surgeon for an abscess under my left arm that has formed two separate sinus tracts and has not stopped draining for six weeks in spite of two rounds of different antibiotics. After examining me, the surgeon confirmed that I have HS. He is reluctant to do surgery since areas beneath the arm are notoriously difficult to heal after the procedure. Instead he opened and completely drained the abscess (and two more ‘babies’ which have started to grow next to it) and I’m starting a third round of oral antibiotics to see how I respond. I just hope my digestive tract can handle having all the good flora being killed off by the constant ingestion of antibiotics! I’m taking probiotics and eating yogurt until it’s coming out of my ears to stave off intestinal side effects. Thank you for having the courage to post your experiences – knowing that someone has already been down that path helps give me the courage to face what may be a long and possibly painful road ahead.
I too suffer from HS, though not nearly as badly. The only thing that have me long lasting relief was a product called ASEA. I was severely based in an online community for speaking up about this. They thought I was trying to sell it. I am not a sales rep for this company. Long story short, within 2 days of taking it, every lesion had healed. Like I said, mine is not horrible, but i do usually have 3-5 active cysts at any given time. This stuff HELPED!! I had to stop taking it because I couldn’t afford it. It is pricey, and I guess if you are spending a lot in dr visits, meds and bandages, it would be worth it. But I just can’t buy it. Again, not a saled rep. Just sharing that worked for me. Thanks for sharing your story.
Sorry for typos, typing this on my phone- auto correct is a beast!
Oh my! I suffer from this too and never realized how many people have it. I have it in many places also including both armpits, both inner thighs, and my buttocks. I had mine for 8 years and im only 23 years old. The smell is unbearable, as is the pain. I feel your pain. Fingers crossed they find something that will cure it.
Im so sorry that you go through this every single day. I’ve got my first bump a day ago, I’m trying GSE that so many have said “works like a charm”. I haven’t figured out why its started other than I’ve been off my diet. Have you tried going to an all organic diet? Quite possibly you’re triggers have to do with GMOs? Cancer can be cured or chased away by pure organic diets, it couldn’t hurt to give it a try…
Hey man I just wanted to let you know that I know what you’re going through. I suffer from HS as well and have the same problems as you. It’s really cool tht you had the courage to create this site and comforting to know I’m not the only one. Physical disfigurement has a way of making you feel kind of like an outcast. I am going to keep up with your site. Huge inspiration!!
Hello and thanks man for checking out my blog. It truly means alot. I know this disease can embarrass me a lot sometimes. I am so thankful to be able to talk to others who suffer. People that do not have it just do not understand the pain we go through. Thanks again!
I thought I was just gross or weird but your pics could be mine! For the last 3 years I’ve been getting the exact same problem under my arms and my groin area too! I didn’t know others had this problem! I’m not alone anymore-I think I’m gonna cry!
Hello and thank you for the post my friend. And you are not alone. I am glad you found my blog.
It’s incredible to know that I’m not the only one trying to deal with the smell and the pain and the leaking and bleeding. I was given antibiotics that made me sick and didn’t help at all. The dr said it was ‘just a boil.’ Now it’s huge sores of about 3-5 under each arm. I have good days and bad, depending on how many are leaking in relation to how many are at bursting point. I can’t believe I found your blog!
I am glad you found it. Sounds like you definitely have HS. You should bring that up to your dr to make sure he knows. And I know the feeling today happens to be a good day for me thankfully.
Thank you so much for posting these pics on here-you are so brave! It’s bad enough that these things hurt physically, but a person’s disgusted look at smelling or seeing them on me is insult to injury. I’ll definitely let my dr know. *nods* I only have 1 leaking and 3 fit to burst so it’s a ‘good’ day. You are amazing; I can’t thank you enough!
Thank you so much for posting. It truly means alot to me. I am glad you found me as well. I am always here to talk. And I am glad your having a good day! Keep in touch.
There is a website called http://www.hs-foundation.org/ that may help you and your pain.
Thank you do much for the post. I am very familiar. Great site.
You should join the HSF Patient Action Network. There also a find a doctor on the same website.
This makes me feel soooo much better to know that there are people out there that understand what I go through everyday. I’ve dealt with this since I was 12 & its made me not feel comfortable enough to normally live my life as I grew up. I felt as though everyone else would be so disgusted that I would be an outcast. It honestly in a sense made me into a hermit. I’m afraid to be around others for long periods of times incase it starts to smell or leak through. I’ve never worn a bathing suit in public with others. The little things that most kids my age do I’m too afraid to even try. I still suffer, and I am in pain almost every day. Some days it hurts so bad I can’t even walk. I’ve never been able dress nice like other girls my age because I’m afraid to show my skin, and it ruins my clothes daily. I use to cry every day growing up because I thought I was a mutant, and that I was the only one in the world suffering from this disgusting problem. So I thank you all for stating your stories, and allowing me to have something to relate to.
Thank you so much for your post. I feel your pain. I am glad you food my blog and shared your story. Please keep me updated with how you are doing. What part of the world are you from?
I am from the US(wv).
I also just saw that you had surgery for yours. I was just wondering what was the outcome for you because for myself they came back after surgery & I also lost the ability to fully extend my left arm & I lost feeling in it. So I was just wondering if you experienced any of the same things.
Hello. Same here after surgery I am back to hs within months. It is so frustrating.
How do you get your open wounds to finally close up. I have one under my arm that just doesn’t seem to want to heal. I’ve never had one this long that’s still draining. && I just read your depression paragraph. I feel like you just understand so well. Since realizing I had this I’ve gained sooooo much weight. It hurts to walk a lot of times let alone work out. It is sooo difficult, dating as well. I’m very young & it’s extremely upsetting not being able to do what most other girls do so I thank you for that. I just decided to see if I could get anti-depressants because it has really taken a toll on me. What do you think about that?
Hello, and thank you so much for your post. Most of mine remain open as well some so bad they need bandages 24/7. And about depression unfortunately that comes along with HS. What I have felt works best for me was building this site and talking with others, knowing we are NOT alone. Like today for me is a very very bad day I am in massive pain but I still try to stay positive. I know this will pass in a few days. If you dont mind me asking how old are you and how long have you had HS?
I know…. I woke up with such a HUGEEEE mass in my leg. I’ve been doing the side crab walk all days…. It hurts sooo bad even to just sit down. && I am 20. I’ve has it since I was 11
I too suffer with this. My heart breaks for everyone. My OB/GYN diagnosed me a couple years ago, and I am 35 now. I currently have been dieting and exercising and it is a catch 22. The heat from exercising makes me get more. I have not been able to exercise in a week because I have had one on my lower stomach. I sure hope they find a cure for this as my sister also ha HS. I have tried all treatments to no avail. It’s depressing knowing I will never wear a bikini or strapless dress, but I guess that’s the life that was intended for me. Thankfully I have someone close who suffers through what I do and also have a supportive partner. Keep your head up everyone, it’s sometimes a miserable exsistance.
Thank you so much for sharing those pics and explaining what you go through on a daily basis. I too suffer from HS and I’m miserable, I feel cursed. I started a blog just to be able to express myself because I’m too ashamed to talk about it in real life. I’m sorry for your suffering http://continualsuffering.wordpress.com/2013/07/19/hello-from-hell/
Thank you for your post I checked out your blog. Stay strong.
HEy man I admire the courage to post the pics. I have similar issues when it comes to my HS, I was diagnosed about 6 years ago and have been suffering with this about 12 years, I m 31 now. I have cysts on my scrotum inner thigh and groin area. I have draining holes on the nape of my neck, about three across the width of the back of my neck. About 5 years ago I had bilateral exicisions on my armpits which healed decently but there is one hole on either side slowly draining daily. I had a pilonidal removed also, which reopened and drains slowly to this day. I’m getting some new ones on my scalp, those combined with the neck ones make it utterly embarrassing to go to the barber. So I’m learning to cut my own hair. I can’t sit a certain way since my inner thighs have flared up. I’m constantly in pain and am experiencing bouts of depression that are affecting my relationships with friends and my wife. She tries to understand, but no one gets us like we get us, you know? I am seeing a dermatologist now that has me on long term antibiotics, rifampin and clindamycin, which haven’t done much but they have helped getting rid of the faint smell that remained, since I have been exercising and eating right the smell had really been reduced. I am scheduled for Remicade infusions next month and hope this treatment can help more than the antibiotics have. THis condition along with my fibromyalgia have really affected my outlook on life, but I am becoming more accepting of my fate and doing m y best to deal with the condition. This is my first post ever about my condition, and I must say it’s the most I’ve ever disclosed and it feels therapeutic.
Hey thank you so much for opening up. I am glad you found my blog. Someplace where we all have something in common. I know what you mean it is hard for anyone to understand, they do not realize how bad the pain is and how friggin embarrassing this disease is.
You should try using Manuka Honey.I’m not in the medical field, but I’ve been reading a lot about this condition. My boyfriend suffers from this condition and watching him suffer through this is horrible. Manuka Honey has strong antibacterial properties, and it helps with inflammation as well. He had a sore that was constantly draining for many years. He would use icthammol, but it wasn’t helping close it. I started to read blogs on HS, and read someone use the honey to help close the wounds. I hope you find relief soon.
Hello and thank you I will look into that.
I have been reading about using cannabis for the pain/depression associated with HS. I can’t say that mine is bad enough to resort to that. However, I have read that it helps a lot of people. I currently only have one wound that refuses to heal. It’s on my groin, pantyline area. Even though I wear “boyshort” undies, it is almost always very painful. I take a lot of ibprofen, but I am worried about how that will impact my liver. My sister, who is a nurse, brought me some badages she uses at work. They are for patients with bedsores. Non-stick to the wound, padded with a gel so there is less pressure, and (almost the best part) the adhesive has not irritated my skin at all!!!! I get so sick when I rip off healthy skin from stupid bandages. But these don’t do that. I keep each bandage on for about 3-5 days, since my wounds don’t weep much.
The sad thing is, the bandages are very expensive. My sis brings me “extras’ that have been taken to patient rooms, and not been used. Otherwise they go in the trash. It is a blessing to have them.
Sorry, rambling here, but hopefully someone can use the bandages like I do!
The bandage brand is Allevyn, I have seen other brands, but they are all fairly expensive:(
Hello and thank you so much for your comment. I have tried cannabis and it does help a bit. It helps me relax and to sleep. Lately I have been getting my bandages on ebay. Very cheap I get 200 4×4 for like 5 dollars and 3m tape for about 5. all with free shipping so that helps me save a few dollars.
Hi! I am a P.A. student and was looking over pictures of Hidradenitis Suppurativa while studying for my Dermatology exam. I ran into your posts and pictures. First off, thanks for sharing! Takes a brave man to do so. Second, I was wondering if you could share with me the course of treatment that your physician has put you on. Maybe you could run me down thru your history with the disease and the treatments/meds you have tried? I know it is a lot to ask and I totally understand if you do not wish to share. It always helps to hear from people that actually have to live day to day with any condition and look at their point of view. I know that the Dermatologist teaching us stated that Accutane has worked well in the past for his HS patients. Has this ever been brought up to you? Anyway, I appreciate your help in advance. Any info will certainly help mold me into a better provider. Thanks again.! DV.
Hello and thank you for your post. For the last 10 years I have been on Doxycycline. @ years ago I tried to take myself off of it and after 5 days I was in the hospital with the worst flair up in my groin I have ever had. The Dr. told me if I waited another day I would have lost my testies. I have seriously been to at least 50 doctors since the age of 16. So even though I take doxy daily I still get really bad flair ups but they are ten times worse without them. The doctor I have now is great but does not really totally understand this disease. Right now they are working on my blood sugar to see if that helps, but it has not. I also quit smoking a while ago and that did not help either. Any info you have please share.
I would like to say that I have been on Accutane. It was no help whatsoever. It actually seemed to make things worse during the course of treatment. Also, my doctor kept telling me I had chronic folliculitis, which I do not.
Thanks for the info, Chelsea. I appreciate your input. I am just trying to gather info on what has worked for HS patients in the past, instead of just going “by the books”. Sometimes, what is in literature does not work for all patients. It is important to me that I know how to give the best care possible whenever I do encounter someone suffering from HS. Any meds or treatments that you have found particularly effective for you? Any home remedies that have aided?
I cannot say how proud I am of you for being so brave. Anyone with HS knows sharing this horrible disease to anyone is heart wrenching. I know I would never be able to share this with anyone, let alone the Internet. My heart aches for you. I know what you are going through. I hope you have support and if you don’t, I’m here for you. You are so strong for someone with a “life-taking” disease. I really wish you the best and I will never forget what you shared, what you’re going through, your bravery and your willingness to stay strong.
Thank you so much for your post it truly means the world to me. I have shared with the world, but honestly none of my friends or family know about my blog. But I do like sharing with all of you guys. It helps me make it through the day. I do not have local support when I try to talk to friend or whatever most of them do not realize how bad this is and how much pain I am in. Some think I am a exaggerating, they truly have no idea. And again thank you so much for your comment and please keep in touch.
The worst part about having HS are the unsympathetic, unknowledgeable doctors. At least in my case, every doctor I have seen has made me feel guilty and embarrassed for having this disease. If the doctors didn’t have such a hard time diagnosing HS, I believe the flare ups, scars, embarrassment, smell.. would be a lot easier to, at the very least, maintain.
I developed HS at the age of 7. The first flare ups were boils in my groin area. Being so young, I brushed it off and “took care” of it. Because I was so young and hadn’t told anyone about the boils, I didn’t have gauze or bandages for them. I remember the pain I had when the boils would drain and my underwear would stick to them. I would have to peel my underwear off of the opened boil. The pain is the worse pain I have ever been through. I broke my femur a few years ago and my HS pain was worse than that.
This went on for the next 6 years. Then I started developing acne in my cleavage. This developed gradually, with a pimple here and there. The part I didn’t realize was the scars and sores this would leave behind. The acne in my cleavage got so bad, I had open holes in my chest at least a centimeter deep. Then came the boils in my armpits. The pain of these flare ups were the worse for me. I would wake up in the middle of the night to excruciating pain running from my armpit to my wrist because I accidently moved the wrong way while sleeping.
Finally after 8 years after first developing HS, I decided to tell my doctor. When I told her, she asked to see the flare up points and the boils. I first showed her my cleavage. When she saw it she screamed, ran to the bathroom (which was in the same room) and threw up. Having HS is such a traumatizing disease, but to be 15 years old and have this reaction from your doctor is something I probably won’t ever get over.
I finally found a couple when I was 19, who happens to be a plastic surgeon and dermatologist in the same office, that were knowledgeable (to a certain extent) about HS. We tried all types of topical creams, antibiotics, diets and even quit smoking. We finally decided on removing the acne in my cleavage to see if at least that flare up would stop.
3 years pass by with no flare ups in all areas, cleavage, groin and armpit. I felt like I finally had a life. I had prescription antibiotics and topical cream for if/when I felt a flare up and prescription scar cream for the boil scars. Out of no where, I start getting acne in my cleavage on top of my surgery scar. I immediately did everything my doctor told me to do and nothing worked. I am now back to the worst my HS has ever been and my doctors have given up.
This disease is your life. It has taken away so many life experiences and enjoyments. I’m becoming more accepting of HS and trying to really believe that this is only making me a stronger individual. I try to look at the positive outcomes of this as much as possible. Even though this disease is my life and it controls every aspect of my life, I’ve come to believe this is allowing me to only keep people in my life who are here for me, this makes me a stronger person and this brings me to think about all aspects of life and remembering it could be a lot worse. This disease could be terminal because its not curable, like thousands of people out there. So I just tell myself everyday, this is what I have, I have no choice, take care of it, live as much as I can, because it could be worse.
Hello! I wanted to leave a message in hopes of helping. I have had HS since I was 15yrsold. I am now 36yrs old. Naturally, we know there is no cure. Treatments are rarely effective. I have found that BLACK SOAP does wonders! While using it…it dried up any sore I may have had and they did not return. My skin in the groin, breast area feels softer as well. The soap removed blackheads as well. Its fairly inexpensive. I pay $3 for a bar in Walmart. U will find it in the ethnic beauty supplies. Technically its with the shampoos, shaving cream etc. Its just black soap, seriously thats what its called. I hope this helps someone out there!
Hello and thank you so much for the tip. I am going to try this. I will keep you updated also please keep in touch!
First of all I want to say thank you for being brave and posting this. I too have HS I’m 22 years old I started noticing it in high school. Although I am fortunate enough mine is not as severe I do get a large amount of flair ups mostly in my armpits and thighs. I have tried various home remedies and I currently do not see a dermatologist due to no health insurance. Starting Wednesday I will be embarking on a controversial weight loss journey with the HCG diet (monitored and developed by a Dr) which includes a 500 calorie a day diet and minimal assortments of food. I have read weight and triggers from food we eat can cause flair ups so I’m hoping this diet will help my HS. It is an embarrassing painful disease. I am fortunate enough to have a loving and supportive husband but even so I still become very self conscience about myself many of my family and close friends do not know I have this so I applaud your bravery in posting about this.
Hello and thank you so much for the comment. I am glad you found my blog. I have tried to track my foods and see what triggers it but no luck. Please keep me updated.
Hi my name is Kirstie im so sorry for the pain you R going though every day I too have got hs and have had two operations under my arms the first was in January the second was in august i still have to have another two but the one i had in January has healed and im pleased to say they have not returned yet. My operations were about 4 hours long but it has made a big change to my life i was just wondering if U have looked into surgery. Your very brave for sharing you story and your photos and i wish you all the luck with it xx
Hello and thank you so much for reading and sharing. It means the world to me. I am also glad you are doing better. I have looked into surgery. They are having a problem graphing good skin.
I’m very sorry about your suffering from such a painful condition. I will pray for you and for a cure. God bless you.
Hello and thank you very much for your comment.
I’ve been suffering from HS for 6 years now and it is very depressing. I have 2 kids, a 16 month old and a 5 month old. It is very difficult to do the simplest things with them and its heartbreaking. I am thankful for my understanding husband because EVERYONE else in my life thinks that I exaggerate and that I’m a weakling. I even had a doctor tell me that since I went through child birth twice, the pain from HS should be a piece of cake! How dare he? People who haven’t been through what we’ve been through shouldn’t pass judgement nor even open their mouths to say such things. This disease is debilitating and there should be more information out there. I just want to say I feel your pain (literally) and am praying that you find relief. Take care. BTW your blog is awesome! Thank you!
Thank you so much. Your post truly means a lot to me. I am so glad you found my blog.
Hi, this site is such a help and I dont know if I have this or im just freaking out. It started with small pimple like things on my thighs but i would pop them and they would just scab stay for 3 weeks then scar then I got one on my lower abdomen and I popped it. the next day there was a whole about the size of a pea filled with white puss I didnt think much of it. I just put antibiotics from Rite Aid on it and a band aid and went on with my life. The next day I woke up with a soaked band aid and a whole the size of a quarter. I went to the doctor and they said it was just an ingrown hair. I was happy to hear it wasnt an STD or something. Im on antibiodics for infection and getting the inch deep hole on my stomach packed with gauze. yesterday I saw a pimple/ ingrown hair on my inner thigh and this morning it turned inter another pea sized hole on my groin/ inner thigh area. I just put gauze over it and to be honest I am to embarressed to show the doctor all the bumps on my thighs and the sore on my inner thigh. They both hace thick white puss that a ton comes out. I squeeze and a chunch of puss from deep inside it comes out. This is super embarassing and I am scared to be diagnosed with something like this. I have been going to the doctor every day for the past 4 days and I have to go back today. I might tell him today but Im so embarrassed. I have major depression and having suicidal thoughts with NEVER effected me before. Im a model / Actor and I absolutely LOVE my life but now that this is affecting me at the age of 19 I dont know what to do. Im in pain, I have been to the doctor so damn much, Im embarrassed and people do not understand. all my friends are calling me a pussy because I cant take the pain but shit this hurts and it hurts me mentally a lot. I have pictures on my phone too and my whole in my stomach looks like a gun shot. I need help… a lot of help. someone please help me
Hello my friend thank you so much for your comment. I know exactly how you feel. I first had HS around your age. I am now 41. It will be tough but stay strong that is all we can do. Hopefully by time your my age there is a cure. Please keep me updated.
I know it’s hard, but don’t be embarrassed to see a doctor – they might not always know what it is, but I assure you they’ve seen worse. To me what you’ve described does sound like hidradenitis supperativa, so you might want to mention that to your doctor when you go. Be very polite about it – patients who diagnose themselves can sometimes be difficult to work with, so it makes doctors wary – but definitely mention it, and if the doctor seems dismissive ask firmly on a recommendation for a dermatologist.
According to the sheet my doctor gave me, it’s actually a fairly common infliction, and for most people it is not as severe as what is shown here. If it becomes more severe I know you will be strong enough to handle it, but it very well might not. Take care of it, and take care of yourself! Good luck!
hello and thank you so much for your comment. I am under a doctor’s care I even go to the Mayo Clinic yearly for test. over the years I have probably seen at least 100 doctors and none of them can figure it out or at least how to control my problem.
Man..I just want to give you a hug. I am 25..female and have had this fuckin brutal disease for 6 years. I am stage 2 but question some days if I am closer to 3.. I don’t know if I am lucky…but it only affects me in the groin and area so far…but I know pressure from my bra has been bothering my under arms… The dermatologist told me it is moving to ny thighs..stomach and under arms.. it is truly horrible. No one should have to suffer through this. I am going to be trying cbd oil. I HAVE a feeling deep down that it is our answer..or only help. I know that no medication has helped me and I have almost stopped taking them completely. Drs are so useless it’s like the don’t care. Depresses me. You should consider trying a high in cbd strain on cannabis and use it appropriately(not smoked)..and see if it helps you. .. maybe you have tried.. I don’t know..but I think our “cure” is going to be something natural vs man made. Just like how cancer is cured by using cbd. Same with mrsa..
Hello thank you so much for your comment. A hug sounds amazing I could use one. I have never tried that. Please keep me updated and let me know how that works.
I had a dermatologist recommend using Hibiclens, a chlorahexadine wash in the shower. I think it helps prevent infection when the cysts are open. It hasn’t made it go away but they do heal faster when they break open if I use this.
So glad to have found your blog. I have not been diagnosed by my doctor, but after leaving with horrible pus filled boils since I was 17, I’m now 25. The pain in unimaginable, so finally I’ll bring it up to my doctor. I had a ER visit on an extremely large one a few months ago and they told me it was a staph infection. I tried to explain I’ve had these for 8 years they come in the same places, and new ones form in other areas. Right now I have them on my belly, underarms, privates, and just recently have one under my right breast that burst tonight. Mine will leave ugly black/purplish scars behind, and those will refill with pus eventually. I understand what everyone here is going though. I feel for you all and pray everyone of us someday might find out a way to cope and improve this condition.
Hello thank you I will look into that.
You are so brave to post this. I found this link after doing a google image search and seeing the spread of blood and pus on the floor – it was such a familiar image, even though (luckily) mine was much smaller.
I have a mild case, and I am very lucky that my OBGYN was able to give me a diagnosis. What I have is nothing compared to this – it’s in only one area, and I typically only have a few boils once a month, and lots of old scarring – but she was still surprised to see it, and acted like it was one of the most severe cases she had seen. I am happy that she knew enough to diagnose it, but she didn’t seem familiar with the issue at all. That’s crazy to me, since it’s clearly not uncommon! I think often people are ashamed to show anyone, even their doctor – I first noticed it as a fairly young girl (mid-teens) and was convinced I’d somehow gotten an STD even though I’d never had sex.
Sorry for the possible TMI, but have any ladies noticed that it is worse in the times around your period? Since mine is only in my genital area (for now… Your post has made me count my blessings for sure) it could just be because of the irritation of using a pad, but I’m curious if it’s a stress/hormonal issue instead. Obviously men get it as well, but they have their own cycles of stress and hormones.
Thank you for being willing to discuss this. It has clearly helped so many people, myself included, to see someone being so brave and open.
hello and thank you so much for your post. I also think it is related to stress. but my doctors do not think so but then again they do not understand the disease.
I’ve also been diagnosis end I can’t take the pain from theses …..I’m so done with it, I started when I was 16years old, can’t sit,walk,or move and I’m done living this way…too painful..
Hello. thank you so much for your post. I know this disease sucks bad. but please never give up. hopefully someday soon they will find something to ease our pain.
thank you so much for your site. I too have this and have since my teen years. I am now 32. For me, stress,fast foods and sugar are definite triggers but I really don’t need a trigger..sometimes it just happens no matter what I do. Exercise helps but its so hard to move depending on
where your outbreak is..and I know for me spending even a minute too long
in sweat clothes will give me a sore
for sure. I have read that there has
been some success with Humira
injections to help with HS as it does
with other autoimmune diseases. I hope we can all find what works for us and we have pain free days ahead! I’ve been there with the drainage on the floor..the bandagea. .the bridesmaid dresses..all of it. Thanks for reminding me I am not alone.
Hello and thank you so much for your post. I have tried every food and diet and in my case nothing works. I may have a relaxed few weeks then bam its bad. Thanks so much for sharing your story.
I posted a while back, I started a sugar free,gluten free,no starch, low to no carb,organic,dairy free for 30/50 day cycle HCG diet 54 days ago. I’ve lost 48.6lbs and went from a womens size 26 to an 18. Through all of this I’ve also restarted hormone birth control and started tanning. Although I’ve cut out just about every food that is supposed to trigger HS I’m still having break outs however not as frequently and not as severe. I noticed they’re all cleared in my abdominal region and have lessoned between my thighs,under my breasts,and under my arms. I started using an organic baking soda deodorant and I noticed less bumps than when I used traditional deodorant. I plan to undergo another 50 day cycle and hope to lose an additional 50lbs and keep reducing my HS however possible. I don’t think that I’ll ever be rid of it and the scars will still be there but I hope one day I’ll only have a minimal amount.
Thanks for updating! It’s nice to see others’ progress, or lack thereof. I have toyed with drastic diet change, but it’s a huge commitment. I have 3 young children and a husband that won’t eat that way, and having “their” food around is too great a temptation! Maybe one day….
Hello thank you so much for your post and I know exactly what you are going through!
Hello and thank you so much for your post. And can you please tell me about the deodorant you are talking about? I would love to try that.
I know that everyones reaction is different but I did the Humira injections every 2 weeks for 8 months and I didn’t have any improvement. Hope those of you that try this have better luck than I did. Of course different things help different people, thus far, I haven’t really found anything that will help me.
That’s good to know thank you for sharing!! I am wondering if it really is autoimmune in the traditional sense. I truly believe it is sugar levels and hormones… Somehow smoking fits in there but maybe it’s just a side effect of all the chemicals and unclean living that’s associated with living and growing up in America!
I do believe it has something to do with the immune system. Also just a note I quit smoking July 22nd and have had no changes for the better. Thanks so much for your post.
My biggest trigger seems to be the monthly hormonal shifts I experience with my menstrual cycle. Usually a week to 10 days before my cycle begins I will have an outbreak. It will generally continue until my period id over. (I’m actually looking forward to menopause in the hope that it will help reduce the frequency and severity of outbreaks.) I have also had issues with level 4 cystic acne, which is the most severe form of acne you can have. Large, deep boils the size of a quarter that would never open or bleed but were extremely painful and during my teen years. Made it difficult to be in public because people would stare. I have to wonder if the cystic acne (also triggered by hormones) and the HS aren’t related in some way.
I also believe this may be related to hormones. Is there anyone out there reading this that has gone through menopause and has seen some improvement. I am 31 but I would be willing to have a complete hysterectomy if it would help. Just not something I want to do if there is no guarantee. This is a great blog. Thanks again!
Emily, I am 32 years old. I had a complete hystorectomy two years ago. It has not helped my HS at all. At first I really thought it was going to. If anything, it is actually worse now. And to make things worse, i cant loose weight. I decided that I was not going to take hormones after the hysto, but te weight gain is aweful!
Thanks for the information Heather. I’m sorry it didn’t help. I felt the same way when I started the Humira. I had really high hopes at first and then after awhile I realized it wasn’t helping. I hope you find some relief soon.
Well my dr started me on a higher dose of estrogen birth control because she had read that it has helped in some cases. I can’t say it helped me but I haven’t taken it for more than 3 months and in the mean time gained a bunch of weight . Recently tho I have been putting the neosporin with pain relievers on the painful ones and that helps some.
well, this is fascinating. I have had repeated groin infections and now have a testicular abscess the size of a lemon, with multiple abscesses on the opposite thigh/groin. All the doctors keep saying is that I have a skin infection and give me a 7 day flucloxollin course. This testicular thing is probably the most painful thing I’ve ever been through (well, since pilonidal sinus30 years ago). I am going to suggest HS to my doc tomorrow morning. Thanks for the blog….
Man I know exactly what you are going through. With me I have been on Doxycycline to try and keep things under control. I tried to take my self off it for 5 days and ended up with the huge one on my groin you see in the pics. I have been on them for over 10 years, In my case this is the only way other wise id probably be dead from pain. Thank you for checking in on my blog and please keep us updated as to what your dr says.
Please keep us updated if you do see any improvement. I am actually on the implanon which has no estrogen. I wonder if that is making my hs worse. Also, since depression/anxiety go hand in hand with hs, i would like to know what medicines have helped the most and if not medicine how do you cope with the stress and depression. Thanks! Hope everyone is having a pain free night!
The depression for me of being alone is the hardest part. But I just try and stay positive as much as possible. I am currently not on any meds for depression.
hey man up late looking through the web and came across this. so i also have hs, its not really that bad for me but i feel your pain. the other day actually i had the same one on my nose, and thought it was just a simple pimple, even tho it hurt like a bitch,, so maybe it was hs. Anyways, have you ever tried of getting a food sensitivity test with at a naturopath(IgG and IgE and IgA tests)? someone recommended it to me and im highly considering it. or maybe know anyone who might have tried it? it comes to a total of 500$ for the testing in cost and just thought i should ask since i couldnt find anything about it..
I am definitely going to look into that.
Hello pal, I just found your blog. Wow, you’re one brave man. To stay as positive as you do is an achievement in itself. I’m also an HS sufferer (just had surgery) and although my HS is at stage 3 it’s currently only limited to my armpits. I’m well aware that things could get worse due to the nature of HS but hey, I’ll cross that bridge when I have to. Stay strong buddy, with an attitude like yours your already half way there. One last thing, there’s a clinic in Ohio that specialises in HS, it’s very much helped a few folk I know from another HS forum who highly recommend it, it’s not something I’ve used myself as I don’t live in the USA. It might be worth checking out if it’s an option for you. All the best.
Hello and thank you so much for the comment it means alot to me. I am going to do some research on that clinic. If I can get some money together id love to take that trip.
I am right there with ya. I was literally dxed Friday, but it all started 8 years ago.I am lucky enough though that mine don’t show. They appear in the most wonderful spot on my buttocks. Friday was the first time I had the courage to even tell a doc what was wrong. I was in the Navy when it started. The doc on the ship told me it was an ingrown hair and to quit being such a little bitch. So for 8 years I’ve hated my life. Now I’m finding out years later what it really is and man you hit it right on the head, no pun intended. Thank you for having the courage I’ve never had.
I know exactly what you mean nobody knows how much pain it really is.
These pictures are wonderful. The blood on the floor especially got to me. Just this morning, I barely touched a nodule under my breast while getting dressed, and it burst everywhere. That photo sums up dealing with HS so perfectly.
29 male
hi i spent a week in the hospital about 7 months ago i had 2 the size of golf balls on the inside of my left leg practically on top of each other. the doctors now thanx to me doing my own research and finding sites like this i can now know what i have as the doctors miss diagnosed me i get them on both legs inner thigh and constantly deal with no less than 4 at a time the size of a large grape. so painful i cant walk and my wife calls me lazy but it just hurts sooo bad to move and sit certain ways. they pop or leak unexpected my grandparents make me sit on a garbage bag as to not stain anything i sit on when i visit. only dark clothes for me below the waist.as i said a week in the hospital they both swelled to the size of a softball and developed cellulitis on top of it they eventually lanced them… instant relief in pressure.
ive had them since around puberty but i was fit and athletic they never posed an issue really they would get hard and stay a lump and eventually go away, but now i get them soo bad and they mark up my shorts. and a soda-pop can full of blood is generously putting it with me…
of course i self operate and lance them on my own when they get closer to the surface of my skin i try to be sterile and i know i shouldnt do this and it bleeds soooooo much but, once i make a small incision like 2-3 milimeters and let it gush and believe me, it gushes i then squeze the area and i am of course clenching teeth in pain but i squeeze and make sure i get it all out i squeeze because sometimes theres a clot and then round two under the clot fires out like grape jelly in looks and texture. once ive done this i clean up the area with peroxide and alcohol and i feel soo much better, theres usually a empty pocket where the bump was but its drained and heals over night (leaves alot of scar tissue).
i was told that week that i would have the condition the rest of my life and would have to make regular visit to the ER for lancings, who has the money for that!? (not me), anyway it sucks and bleeding them is my way of getting rid of them (temporarely). i recently went to the barbershop he has white chairs i knew i had had a bump on my thigh but didnt think it was ready to bleed, i get up from my haircut and the seat looked like i had a womans period on a crazy heavy flow day all over the seat. my wife was in shock i noticed her face and turned around and wiped it before the barber could see.. i nearly cried in embarrassment.
my wife when she notices these things ask me if its my time of the month… i hate that.
i have 5 as we speak and i constantly have to readjust my sitting in this chair to alternate pain areas in my inner thighs.
Hello thank you so much for your comment. I totally understand man what you are going through. I have a very hard time sitting anywhere from pain and leakage. Just this Christmas I went to a party and the people only had white furniture. So as I am sure you know I had to stand the whole night. And also I am sorry to hear what your wife says to you. I get called lazy all the time. Like right now my butt has so many flares it is making my whole right like hurt so bad i can barely walk. Thanks again for checking out my blog and please come back often.
I recently stumbled across xxxxx.com. she had just come out with her book “xxxxxx” about this condition. She also highly recommends the xxxx diet to find any food triggers and treat the illness. I just started the xxxx diet a couple days ago. I will post back with my results.
So sorry to hear what your wife says. That’s very demeaning.
Please, check out the xxxxx and research xxx. I am hopeful for good results.
Hello thank you so much for posting to my blog. I am familiar with her book. But I can not endorse it at this time. So I had to edit your post a touch. I have contacted her and asked her to give me a copy free so I can try it and see if it works. Because at this point I am skeptical and do not believe it. As you can see I am very very passionate about this disease and can not endorse a book for profit until I try it myself. They did email me back and I never heard back from them. I basically told them if you believe and endorse your book give a copy to a real sufferer and I will report my findings. There are so many scams ripping us off I just cant endorse anything. One of my main reasons is why is there no before and after photos? SO again I thank you and PLEASE keep me updated to your progress. Cause if something does work I will spread the word like crazy.
Kyle, read your post and know your pain! I have found that washing the affected area after a shower with witch hazel is VERY helpful. I keep a squeeze bottle of it in my shower and after I shower with regular or anti bacterial soap I follow with witch hazel. I just soak my washcloth with it and wash all over very gently. If I feel one coming on washing it immediately with witch hazel can sometimes arrest its development and reverse its growth . Cheap too! $1.49 a bottle at target so I stock up regularly. I wrote a post earlier today you might want to check out. Hope it is helpful!
I understand your passion, if you will, notice that I frequent your page, and have commented several times. I also see why you edit the name of the book. I don’t have it either. Though I submited to win one.
What I don’t understand is why you edited the name of the diet. It’s not said author’s diet. The diet has been discussed on many blogs and websites. I know, I have been researching said diet for a few weeks, every since hearing of it. I decided to wait until after the holidays to attempt it. It would have been too hard to limit fun food during the holidays.
I will keep you posted on my journey.
Hello and yes I see a few comments thank you so much! I was not aware of the diet another thing I have not tried as of yet. But please since your on it please keep us informed. If things go great I would love to talk about it. Again I sincerely thank you so much for coming to my blog often and commenting. i truly means alot to me.
So, I started the AIP, found some great recipes, and was daweally well. 11 days later, I was exhausted from cooking, fighting an illness, and I gave in and ordered a pizza. Just a couple days into it, I felt so much better – energy was up, mental fog was abating. My cysts were still there, but not too bad- it was just a few days in. I have been off AIP for a week. I feel horrible. Had a major flare that is making any movement horrendous. I have no energy, and I feel “foggy”. I will be starting back once I can plan a better way to prepare the food ahead of time (it’s a ton of cooking, and that is thae hardest part).
Also, that book I spoke of earlier, I won one of the give aways. I’m hoping to glean useful info from it!
29 male reposting
IMPORTANT !!! PLEASE READ!!!
i forgot to tell you all another extremely good tip to helping with walking especially with skin to skin friction as you know if your like me on the heavy side it took me a long time to find a company that sold my size spandex shorts or they are called “compression shorts” and i found the first pair i ordered a 4xl and found that they ran big and needed a 3 xl. and im a 4xl in normal like 56 in the waist. anyhow nike, under armor, adidas, reebok, no one sold my sizeonline or on the shelves so for us bigger people and i realise you might edit as you might not be able to endorse things but i hope you dont, go to http://www.aerotechdesigns.com wearing this while a flare up is in progress will take you from horrible walking pain to at least 85% pain relief. i wouldnt substitute them for extreme durations of time but for like being in pain and needing to go out for groceries or what ever it works like a miracle. but you legs need to breathe so i wear them then go back to loose clothing when i get home and take them off. i ordered 4 pair they are realitively inexpensive compared to crazy top sports name brands!
How do you get tested and diagnosed with HS?
hello I was diagnosed by the Mayo Clinic.
There is no test to diagnose… It is based on symptoms only. I happened to have a very good ob-gyn finally say what is was. Previously it was misdiagnosed as ingrown hairs and ignored during my yearly exams. The ob-gyn referred me to a dermatologist and they had no clue what to do and had to go look it up while I was there.
Hello thank you for your comment. It can be diagnosed, but most doctors are not educated enough on this disease. I was diagnosed about 10 ears ago. The Mayo Clinic Dr. looked at it for about 10 seconds and new what it was in my case. But before I went there I was un diagnosed for 15 years. A big indicator is sinus tracts. I can literally push on one of my flare ups and it might drain 10 inched away from another part of my body. But even if you are diagnosed as in my case it is still here in full force. Finding the cure is what we need to focus on.
My experience has been that most physicians don’t want to give HS as a diagnosis unless there is severe ongoing involvement. I’ve had boils pop up from time to time ever since I went through puberty. In spite of that I went undiagnosed for most of my adult life. At one point I asked my physician if I had HS because of the places I kept getting them. (groin, genitals, under my arms) I was told it wasn’t unusual for people to have individual boils appear from time to time and that some people were more prone to skin issues than others. (I’ve had skin problems all of my life – severe cystic acne, a small recurring pilonidal cyst, etc.) It wasn’t until I had two boils under my arm that were connected by a sinus tract that my doctor conceded that it might be HS.
That is exactly correct. The sinus Tracts are pretty much what hs is all about. There are a few of my family members that get boils and cyst randomly but have never had them go crazy or have sinus tracts. Part of the problem is alot of us are ashamed to talk to our doctors and stuff so not much awareness is being made. Also thank you so much for your post.
I was just saying there is not a test to diagnose it. Like a blood test that confirms the presence of a particular disease. I agree, there needs to be more research for effective treatments.
I too suffer with this. I suffer in the groin area. it can be very debilitating. the type of work i do i am constantly walking. when i have a flare up, walking becomes an acting job trying not to let others know that walking hurts like hell! then the breaking open of the boils is embarrasing from the pus and blood stains in my clothing. intimacy is almost null and void. having to warn or explain my condition has gotten easier but still embarrasing especially when you partner makes faces at the sight of my scars. first thing i am asked “is it contagious?” and i explain no that it is not but yet they are still freaked out. I can’t wear the shorts that I want to wear because of the visible scars on the inside of my thighs. I am so glad that i am not alone and that others understand what i go through. and to thoes who suffer, please keep your head up and do all you can to comfort the infected areas. my heart goes out to all those who suffer with me.
Hello thank you so much for sharing.
hey kim i posted a few days ago, i too have to where darker colored clothing to hide stains and walking is a horrible circus act at times. i posted that wearing compression or bike shorts is a great way to nullify the friction in walking under your clothes its like spandex shorts. i sub them for under wear or boxers, and where loose gym shorts or gym pants that breath like the soft mesh material. i posted above and i will post it again go to http://www.aerotechdesigns.com quality, comfortable, and cheaper than name brand sports apparel. i hope you find comfort in this info.
Thank you I am going to check that site out as well.
I am 34′ and I also have hs and dr at the mayo clinic, but in Minnesota. I’m glad I found your site. I have had 3 plastic surgeries this year, and my arms are completely clear. I have some huge scars, and was in the hospital for 65 days though. The plastic surgery they did on my groin and under my belly did not take. What they did helped, but then got infected again and had to be re cut open, since I have got a lot of cysts on my butt. I am currently on the mend at home. I have had the disease for 13 years, was not diagnosed until 4 years ago, by a local dr. In May I was in so much pain we made the trip to mayo. We scheduled the surgery for July, but in the middle of June, I couldn’t even walk because of the pain, The great dr’s and surgeons at mayo did a 9 hour surgery the next day. I ran into your sight and saw the shorts post above. The best thing I have found is Stacy Adams boxers from j c penny’s online. They seem to work much better than any under armor nylon type product, or compression short. Also the soap I have found to work best is a oxy clean face wash ( I use it on my whole body). It must be the 10% benzoyl peroxide formula. Red 6 oz bottle. I will look forward to following your progress, you have 2 of my dr’s from Minnesota down there now. Good luck and hang in there. I keep telling people I could have won the lottery, but I got this instead.
Hello and thank you so much for your post. I hear exactly what you mean we won the lottery. I tell people that all the time that I am one of the lucky ones. Thank you again and please stay in touch.
Looks almost exactly how I get it. Both armpits, sides of neck right at the hairline, 1 down below. I’ve had it for 12 years now, first noticed it when I was 16 and never said anything about it for a number of years because I was embarrassed. I just tried to deal with it. Being in high school, this was a horrible experience. I started searching the internet for info and was pretty sure I had HS. My flare ups weren’t nearly as bad back than so I just pushed on and dealt with it. My flare ups started getting worse and more frequent so I finally saw a slew of doctors when I was 23, was misdiagnosed a lot and got passed around with try this try that anti-biotic. I even saw infectious disease specialists who couldn’t tell me if it was HS or not. At that point someone suggested to see a dermatologist so I did. He instantly knew it was HS but still gave me the anti-biotic routine and said I will need surgery. At 25 the one in my right arm started to swell to the size of a small grapefruit. When it flared up I couldn’t move, sleep, nothing. I finally opted for the surgery on my right armpit. I always knew they would come back but I actually got 2 years flare up free for the first time in over a decade. Sadly, I’m left with a huge dent and scar that goes from my back to my chest and my other spots started to flare up again 6 months ago. I was searching the internet one night and came across some posts that suggested taking tumeric and zinc and to wash your flare up areas with Hibiclens surgical scrub. At this point, I could care less what the treatment was as long as I didn’t have another grapefruit episode. The next day I went and picked some up from a local vitamin place and the hibiclens from the pharmacy. The posts suggested using the hibiclense and taking 1 of each pill everyday but I didn’t want to consume that much zinc so I take 1 zinc every week and 1 tumeric every other day. To my amazement, this has helped me greatly. I still get the occasional strong flare up but when I can feel one coming on, I take 1 zinc and 1 tumeric every 6 hours and 90% of the time it knocks it out in a few days without draining. I spent tons of money on doctors, had a huge chunk of my armpit removed and the thing that actually helped me costs less than 15 bucks at local shops. I don’t know if this will work for you but I urge you to at least try it. Best wishes to you and hope you find some sort of relief from this nightmare.
Thank you so much for sharing your story.
I ran across this site last night as the motherlode of a cyst was draining. Mine used to be confined to the groin, but this is the second one I’ve had in the same area near my arm pit. I did lot of research on antimicrobials after I was diagnosed, and tried them all: Triclosan, PCMX, CHG (active ingredient in Hibiclens). Nothing helped. I finally went really old school and tried phenol. This regimen has been helpful for keeping groin flare-ups down. I use carbolic soap on my HS prone areas in the shower. I put it on right when I get in and leave it on for a couple of minutes. The Caribbean seems to be the only place that still manufactures it with real carbolic acid, so I stock up at Jamaican or Puerto Rican import shops. (Don’t get Lifebuoy… They’ve kept the medicinal smell, but replaced the carbolic acid with triclocarban.) After showering, I put some Campho-Phenique on a gauze pad and run it over HS prone areas. (Evidently I’m going to have to add the arm pit to my regimen.) It is the strongest concentration of phenol I can find over the counter short of the Lysol in the old brown bottle they still carry in some stores. Don’t worry… I’ve never used the Lysol on my skin, though I’ve been tempted. Phenol products aren’t around much since they’re technically poisonous, but I don’t have to tell anyone with HS that I’m willing to take the risk if it helps with flare-ups. I also add a half cup of pine cleaner (with real pine oil) to each load of laundry. Pine oil is phenolic and has the added benefit of getting out greasy (read: body oil/sebum) stains.
I’m really happy you were willing to share your experience. Having just moved to AZ myself, please let me know if you’ve found a dermatologist who is at least familiar with HS. It’s amazing how few know.
Thank you for the post I am going to look into that I never tried it. Also welcome to AZ. I do have a few names. What are of town are you in?
I’m on the border of Queen Creek and San Tan Valley, but I don’t mind driving, so anywhere in the east valley is fine. I’d like to be able to have a doctor’s name on hand just in case. Thanks!
Hello,
I also suffer with HS, but I was lucky to get diagnosed very early by a doctor here in Ireland who knew the disease straightaway. He put me on Rifampcin, a drug usually used to treat TB. I was on a small daily dose of this for about a year, along with another medicine, clindamycin . My HS vanished completely while I was taking these. I’ve been off them for about a month and it is starting to come back so its back to the doctor for me! I know different treatments work for everybody, but it worked so well for me that I really recommend talking to your doctor about it! I wish you good luck in finding treatment/alleviating the symptoms. A low GI Diet also helps manage it for me! every little helps!
Thank you so much I am going to look into this.
Thank you for this page…. I am suffering from this as well. Could u please tell me if u tried the Black Soap Bar I was wondering if it help?
Hello and thank you for your post. I have tried African black soap a few times. I do love it. But for my hs it did not help much. But for my skin in general it was great. But I would give it a try it may work for you it has worked for others. Please keep me updated.
Okay Thank u for replying…. I have been trying a few things of my own. I didn’t know wat was going on with my body so last night I started my search.. I put a few things together from reading so many post… My steps include L
luke warm showers with antibacterial body wash not scented nor any dye. After shower I use 91% alcohol to the affected area after drying I put boil ease on a gauze and tape it to wherever I have my issue.. I only leave it on for a hour or two and let it drain after.. Cleaning affected areas three times a day has really helped me a lot I have also started a whole body cleanse…. On my healed areas I have start using fade cream made by black/ and white…. It helps me a lot…. I hope someone finds a cure fast cause to even begin trying to get rid of hs is draining my energy
Has anyone tried the ‘Candida Cleanse Diet’? I’ve been on antibiotic meds (doxy, minocycline, steroid meds) for over 10 years. It messed up my good gut bacteria and now if I eat certain foods, I get BOILS on my scalp! Read up on the diet and formulate your own opinion. Just try it, it won’t hurt anything. You don’t eat any carbs, caffeine, some fruits, certain vegetables and sugar. You get healthier when following this nutrition plan also. You have nothing to loose.
Aj
Thank you my friend I am going to look into that.
Hi! I don’t have HS; I just happened to stumble upon your website because I was looking at Amazon reviews for a drawing salve for my acne. One woman who has had awful boils said this salve (Prid Homeopathic Drawing Salve) worked for her (and another user said it sounded like she had HS) so I just wanted to offer this salve as perhaps a way to ease your pain. I am not well educated on HS but I am crushed to see and read about the pain you suffer from and I truly hope you find a way to alleviate the pain.
Also, I read that HS might start from blocked hair follicles… this might be silly but what if you removed all of your body hair?
Stay strong!!!
The salve and review: http://www.amazon.com/review/R1M5DH9MVP0WIA/ref=cm_cr_dp_cmt?ie=UTF8&ASIN=B00016X604&nodeID=3760901&store=hpc#wasThisHelpful
Thank you so much for your post. I wish I could remove all of my body hair.
For Chelsey…. Screaming ((((I Really Do Thank Yoouuu))) I have had this Big A** Boil on my behind for 4 days So much pain I literally cried. I have been checking this site for answers for about a week now. Came across your post and I must say I went to Walmart and purchased PRID with some bandages In 1 hour I felt less pain and in 2 hours it drained and I promise you I felt so relieved….
Hi, I posted a comment today that I think anyone suffering from this health challenge may find useful. I use the witch hazel cleanse daily after a shower all over my body and the affected areas. REALLY helps a lot! Also if you try tumeric take it with bromelian. It helps the body absorb tumeric better. I have been dealing with HS for 34 yrs. now and it has lead me to learn a lot about nutritional healing. Prescription for Nutritional Healing by Balch and Balch is an invaluable tool in understanding health and nutrition. Vigilance is key as is acceptance of our challenge with HS. NEVER GIVE UP!!!!
Chelsea thank you so much I have been dealing with HS for far to long and generally have tried most of the products or ideas posted on this blog. I wanted you to know that the Prid has truly changed my life over just the last two days. God bless you and thank you so so so much. Words on paper do not show the tears streaming down my cheeks. Thank you so much!!!
Hey! I think it’s wonderful that you have so bravely created this page for both yourself and others to share their stories. I have not been diagnosed yet, but am pretty confident I have a milder form of this, as I have constant cysts and scarring around my upper thighs and buttocks. I have one that keeps coming back that I suspect I will need to have removed. I am wondering however, what kind of physician you have found to be most helpful in dealing with this. I also have ulcerative colitis, but my GI doc doesn’t seem to know much about this. My ob\gyn noted the severe scarring but had no idea what it was. I am thinking a dermatologist may be a good bet, but wasn’t sure if they would be of help b/c it is close to my genitals… Thank you again!
Hello thank you so much for your post. I would find a good dermatologist. Especially a younger one. Younger ones are more in tune in my opinion. I also have ulcertive colitis and the mayo clinic in my case tells me they are connected. So yes I would look for a good dermatologist to start. Please keep me updated.
So relieved to have found an ‘active’ discussion on this topic! I have been suffering HS for 10 years now and like everyone else says, it kinda never gets better. I suffer in my groin area.
I have tried numerous types of antibiotics with only Staphylex having worked once. I tried a course of this again but there were no results 😦 I tried the Tumeric paste and dressed it with gauze and micropore, this ended in a huge disaster. I had a reaction to one of these and it took some time for the rashes to go away. I have had two surgically removed, only to find that this created more! I have seen GP’s, General Surgeons, Dermatologists, a Professor who is a Director of Trauma (he had the most experience with HS when recommended) and I have also been to see my Plastic Surgeon in regards to YAG laser. None of them could help but suggested different remedies to try. I currently work in a nursing home, working closely with nurses. They suggested I try Iodosorb powder on the affected areas and dress it with Aquacel, Melolin or Mepilex. Has anyone here had any experience with Iodosorb Powder? It is so hard to get a dressing to adhere and stay in the same spot when it comes to the groin!
I was also wondering, could someone help me identify tunnels/sinus tracts?
Hello and thank you for posting. The best powder that works for my skin is baby with cornstarch.You will know for sure when you have tunnels. When you push one point you feel it travel through your body and come out in a different spot. Once it happens like I mentioned you know know immediately. It is a strange feeling.
Hello all, I am a 58 yr. old African American male who has been suffering from this terrible condition for approx. 34 yrs. now. It is quite a challenge to manage but I have found a few things helpful that I’d like to share with you all. Good nutrition is the first step. Make it your priority!!! Secondly, I have found (and just recently, wish I had found it years ago!) witch hazel is excellent for cleansing and quite cheap I might add! It keeps the affected areas drier which helps without drying out your skin! I also make an ointment of tea tree oil Shea butter and witch hazel which is quite soothing and can be used to bandage severely affected lesions. I was a letter carrier for 37 years so you can imagine the pain and discomfort I suffered just doing my job! I have recently retired and found one greatly helpful lifestyle change. GO NAKED!!! No kidding! Friction from clothing can be unbearable so I go naked at home as much as possible and the relief is VERY dramatic! I also wear spandex instead of cotton underwear, it allows for more freedom of movement with less friction and also allows moisture to pass thru and evaporate rather than become trapped against my skin causing further discomfort and out breaks. Also going naked seems to help my skin heal better with less hyper pigmentation or darkening of the skin around lesions as they heal. There is no cure for HS yet and you must take a multi faceted approach to daily treatment. Fish oil, zinc, vitamin c,e,d are all helpful. Also I usually chop awhile clove of garlic which I put in a bit of orange juice to cut the taste and swallow down quickly, very helpful! Wash as soon as you can after any activity that makes you sweat, as you all know it doesn’t take long for these little suckers to go from pea to egg size ! Hope this is helpful to all, know that you are not alone and together we can find a cure for this horrible disease!
Hello and thank you so much for your post. This is some great information.
I’m sorry you suffer with this 😦 I can’t imagine the pain . I found your site while looking for why my lymph nodes hurt in the groin area. You’re a brave man, and I really hope your condition improves,
Thank you for the kind words.
Hi,
Do you know where I might find info on this involving the face? I’m guessing its very rare as I’ve been unable to find much of anything about it affecting the face. Thank you and God Bless
Hello and thank you for your post. yes I do know it does happen on the face and the scalp quite often. the face on the scalp on not the most common areas but I have seen it on both.
my name is david in Wichita Kansas and my h.s. and locations much the same. from top of scrotum to tail bone, arm pits, right knee to inner thy and back. I write to tell of dr. jace hyder, he cant cure it but made life some what livable. it was a tough road but worth it. good luck and god blss.
Thank you so much for sharing.
This is officially my worst week ever!! I have one lump on my groin area which is now measuring 10cm in length. The pain is excruciating and it’s so painful to walk.
I have been using hot compress and hot baths to help but nothing is easing the pain. I can’t even prematurely burst it to relieve the pain and there is no point/head on it.
Just needed to get this off my chest as today is the first time I’ve let this break me down ;(
Im so sorry you are suffering. I wish I could help. I would keep the hot compresses going even though it seems like they are not working they are. Please keep us updated and I hope you feel better really soon!
We’ll late last night I had to ditch the hot cress and baths as it was unbearable for water to even touch my groin area! I decided to mix up some turmeric powder and toothpaste together and apply it on the area. After 40mins I noticed my lump had formed a huge peak and I was sure it was going to burst overnight!! To my disappointment I woke up this morning and it was still there, with the pain even worse. I had to give the turmeric and toothpaste a go again. After ten mins this time, I thought bugger it I’ll just go to the dr and get it lanced. I removed the paste and voila!!! The head was there and ready to drain!! SO much instant relief! I can walk again today!! I now swear by this concoction and will give it another go again tonight just to see if I can draw anymore out. Wow! I recommend trying this mix if you haven’t already. May not work for everyone and it may not work again for me but this time it has truely been a life saver!!!
Thank you for your support 🙂
thank you so very much Hshelp for starting this blog and thank you to all the different stories written. all your stories have made me realise im not alone with this thing.i have been suffering with this for years on top of psoriasis and it has got very bad over the last 3 years it even caused me to severely hemorrhage through my right breast. my both arm pits are severely scarred with lumps on top of lumps. ive got it very bad on my right breast still with both breasts scarred very bad also in the top inside of my legs, under my waist line and on my face. im 28 years old and my confidence is very bad. my partner of 3 years says he loves me the way i am and that it doesnt bother him at all but its me i feel dirty all the time and its really effecting my life. i have had all the anti- biotics in the world, well it feels that way. i have had roaccutane which caused my airways to close and to be placed on oxygen and then i became asthmatic. i have seen various profs about it and still nothing. i am now under a microbiologist who has given me Bactroban nasal ointment, a antiseptic wash and more anti-biotics which are still not working. ive had approx 12 come up in the last couple of days even with this new medication so it looks like another trip up the doctors. god knows what my doctor is able to do now it seems like im banging my head against a brick wall. Hshelp i hope you are doing ok with yours and to the rest of you goodluck with this problem and i feel for each and everyone of u
Thank you so much for your post and for sharing your story. It truly means alot to me.
Hello – I came across this site while researching the word. I had no idea what it was all about. Anyway, have you ever visited a holistic doctor?
hi MYPREROGATIVE i have never heard of a Holistic doctor. i have seen quite a few different departments and yesterday i was sent back into the emergency department at my local hospital were i was given stronger anti-biotics that the consultant said and i quote “these are deadly drugs that you need to be very careful with” so i start my first does today. fingers crossed that this helps in some way but im not hopeful. please tell me more about a Holistic Doctor
Reading all these posts makes me feel better knowing I’m not alone in this battle. I have been dealing with sores for a little over a year and was finally diagnosed with hs a few months ago. I’ve tried anibiotics, creams and powders. No relief. Today I saw a surgeon and says surgery is my only option. I have it so bad in my groin areaand on my stomach in a skim fold area. All ththis time doctors blamed being over weight but after losing 60 lbs and the condition getting worse I know I have to take the leap towards surgery.
I am horrified. I was told these wounds will stay open and take up toa year to heal. if anyone can give me advise or give me a heads up on what to expect I’d appreciate it.
I have also had crohns for about 5 Years. Been fighting disability for benefits for two years and now I have another painful condition to add to the list. Thank god for my bf and family. And thank you for bringing all these ppl together to share their stories. The fear and depression is so heavy things like this give me hope
thank you so much for sharing your story.
Just wanted to say thank you for being brave and putting up your pictures. Im having a flare up now and cant sleep for the pain. You and the posters here have encouraged to see my doc about this for the first time tomorrow. The human body is gross in so many different ways, just visit your local hot springs or public pool to see.
I dont expect much from the doc, as I also have other chronic problems that cant be dealt with very well (psoriasis, fibromyalgia, IBS). However, I will be taking a step to aknowledge this condition, which is a start.
Thank you again for providing this outlet for others. I just feels good to know I am mot alone in this.
Hello and thank you so much for sharing. Please keep us updated.
I just had my second surgery yesterday. My first was March 11th on my right armpit, and still stings a bit. I still have a few weeks of therapy left for that side as well. Yesterday I did my left armpit and both breasts. I woke up in severe pain, worse than before that has not gone away with oxycodone. My chest is completely cut up, and bruised. It makes me feel very depressed and even more self conscious. I thought when I had the surgery cosmetically I would look better… I also was shocked to wake up and find out a lot of tissue was removed from my breasts and they are now smaller, and lopsided. Granted they are still swollen and I have been told to give them time to heal before gettinng upset… its a nightmare … i also have two open boils in my groin. My job doesnt understand and wanted me back to work already at 9am this morning. Now they say I need to be in next week every day from 8me to 5… i am still on driving restrictions … just a horror story all around. 😦
Hello Everyone. I’ve came across your website awhile back and I finally have the courage to share my story because I pray someone will find hope and peace. A quick background of myself…
-From AZ lived here my whole life
-29, White, female, 5’4 and 135lbs
-HS diagnosed at 20 by OBGYN
-Started Smoking at 19
-I’m very fit and always been athletic
Most IMPORTANTLY, I only have have symptoms near my groin. Reason why I want this stated is because I still til this day have never come across anyone else with HS near the groin. It boggles me why Ive never got it anywhere else. I do not nor have ever had acne issues anywhere else on my body. No freckles, pimples, skin tags, boils, cysts anywhere . Except the occasionally menstrual face blemishes. Countless doctors say they never met an HS patient with my condition. I hope someone reading this will come forth and say this is them too. I did have surgery once back when I was diagnosed. My HS flares up right before my menstrual cycle and times of high stress. I have many scars from the skin stretching to a point of no repair. My cysts can grow to a golf ball size but usually don’t rupture or drain. How I reduce the size and prevent others from forming are:
-Warm bath with Epson Salt
-Warm Cloth Pressure Sessions
-Anti-Inflammatory Pain Pills (NSAID)
-Tumeric, also a great Anti-Inflammatory
-Clean Diet, Any Exercise Possible
-Constipation feeds this disease, so whatever you do DON’T force your bowel movements. When your straining on the toilet your causing severe stress to the sweat glands near your groin and it causes blockage, inflammed, irrated glands. That’s the last thing we want with HS.
-If I have a drainage, I use Hydrogen Peroxide to keep it clean and always let it air dry
-I never where perfumes, scented lotions or anything that is not preventative skin care approved
-Coconut Oil has been THE BEST for me and No it doesn’t clog pores in any way.
-I don’t wear underwear. I own them but I hardly wear them. It is so important to keep the groin area dry and if possible breathable throughout the day
-Try not to sit for long period of time. I know this may be hard (I work in the office) but get up every hour at least and take a walk.
-My best advice next to my favorite (coconut oil) is to meditate, pray, smile, laugh, smell the roses, take time out to center yourself, let go of the frustration, anger, sadness and start fresh from that point. Stress is and has been from many of our stories the biggest trigger to our episodes of HS. I’ve learned after living with severe HS for 10 years that we can’t give up.
Looking at my life through God’s eyes with his love, compassion and power that he has a bigger plan for me that’s more rewarding in the end if I hold fast. And I will not let this disease cripple me from that.
My faith has kept me from giving up so I hope I haven’t offended anyone. This is my story and hopefully if someone out there finds my story similar, I’d love to hear theirs. Thank you for this website, it truly is inspiring and it brings hope to so many of us suffering.
Hello Lynn, thank you so much for sharing your story it truly means alot to me. Your story is very moving. Thank you again and please come back often.
I didn’t realise I could reply here so I’ve replied to you below 🙂
Hi Lynn, if this makes you feel better I’ll share a bit too
Female, 31, Caucasian, Australia
Diagnosed by a surgeon at 22
Smoked since I was 11yrs old (terrible I know)
5″2 55kgs
I only ever get them on my groin! I was hopefully as I only suffered on the right side but two years ago after a terrible breakup from a ten year relationship I immediately (the next day) started getting them on my left side and they’re only on that side now.
Lumps are along the bikini line and pubic area too. There’s about 7 there that just constantly drain and don’t close. The flare ups are to their worst during stressful times and menstural cycles. I am using the contraceptive pill. I find using sanitary items like pads make it worse unless I fold the “Wings” in so as they don’t touch my skin.
I put mysf on a strict health kick nine days ago as my sugar and caffeine intake was a little bit crazy!! I’ve lost almost 2.5kgs in this time and thought that would help my HS but all I’ve noticed is that they’ve been itching like crazy but ONLY of a night time when I’m in bed, strange. As my menstrucal cycle stared today it’s hard to tell if the health kick has helped in any way.
I find turmeric powder and toothpaste mixed had helped me drain those stubborn ones that massively flare up and make it impossible to walk!
So Lynn you’re not alone with the groin area. Feel free to ask me anything if you like 🙂
Oh and I’ve had 2-3 surgically removed as well on the right side when it all began.
I’m so grateful my symptoms aren’t this bad and I can live with it most of the time. I get some scarring but haven’t had any tunnelling yet. I get them on my inner thighs (mostly my right), under my armpits (mostly my left) and they’re starting to appear on the back of my neck on the hair line. I currently have one in my ear lobe and it’s on fire. I can feel the infection draining into the lymph nodes in my neck. I’ve been getting abcesses sinces I was a toddler, always on my back – my mom used to put hot milk and bread poultices on them. Let me tell you, it works to this day. Draws the infection to the surface and puts the abcess through the draining process a lot quicker than if I were to leave it alone. Anyways, I was relatively free of them until my mid-late 20’s when I started getting them on my cheeks. They’d develop into blood infections/sepsis and while I haven’t had any on my face in a long time, my legs and armpits are now the culprits. I’m trying to lose weight – I’ve even hired a personal trainer – but the sweating at the gym makes them worse so it feels like an exercise in futility. I’ve found that really drying out the areas after showers and before I put clothes on helps. Not wearing bras with underwire and keeping my trouble areas shaven/trimmed helps too. I say trimmed because I’ve found the hair holds the moisture in and it’s a good way to maintain dryness in the groin.
Just found this site while doing some research-my partner’s HS is pretty close to what you have now (though his is limited to the underarms and groin so far) and he’s only 28. He had it when I met him, and it breaks my heart to see someone I love in so much pain every day. I won’t even get started on the nasty, condescending lectures he gets about “coming in sooner” at the ER… when the flare-ups happen pretty much overnight!
You guys are so brave, and I am sending good vibes to everyone here.
thank you so much for sharing. I know exactly what you mean about the ER they have no idea.
So I found a product called Magnoplasm. According to the internet, this is only available in Australia. I gave it a go about a month ago. My gosh did it drain them! This product was fantastic!! BUT!!! I have no realised that since using the product I have tiny pin head holes everywhere!!! And what what also feels like very thick scar tissue around on of the lumps >< Needless to say all lumps are still open and continue to drain everyday.
I'm going to bali in three weeks and this was my last hope of trying to get these a**holes to close up!!! The last thing I wanted was for these to remain open and get some nasty infection whilst overseas!!
Has anyone else tried this product??
I may have to switch back and give the toothpaste and turmeric another try
I have had HS for over 10 years, the BEST thing I ever did to get rid of them was change my diet. I basically switched to the following foods ONLY, fruits/vegetables, nuts and seeds, rice, fish and chicken. I cut out all dairy, all beef, all pork and shellfish products. I went from 10-20 sores a day that were open and bleeding to having MAYBE one that was more like a zit than anything else that would occasionally pop up if I accidentally ate something with dairy in it. My pain levels have gotten so much better, I hope that this information could help someone. It’s not easy changing a diet to be so restrictive, but the pain being gone is so worth it.
Thank you so much for posting this photo blog. I thought i was the only one who had it and no one could understand what I’m going through. Just today i had a large spot on my abdomen bust open and it smelled like rotten eggs and used motor oil. My girlfriend had to push on it and when she pushed on one spot a large blood clot came out. The spot on my stomach started out as an ingrown hair and then it grew until i had to have it lanced. The packed it and then it grew to encompass six to eight inches of my lower abdomen.
My HS is all over my body and Social Security says that its not bad enough to keep me from working. I just had the right axillary (right armpit) excised. Eight tumor like cysts were pulled from that area. 980 stitches inside and out.
The Pain and the smell when they drain is nasty and normally i wouldn’t wish this on anybody but I want somebody in social security to understand that it causes depression and the pain is very debilitating.
Really feel for you mate, your outbreaks are awful, I really dont know how you manage, I have a persistant one on my left testicle currently, had it for about a year, comes and goes. Glad at the moment that it is draining each day, it got to a point where i honestly couldnt believe it hadnt burst, it was huge and the pain was unreal. Funny though, whilst this one is here all the ones i usually get inbetween my legs are doing nothing. Odd the way it all seems to work. Hope you get some relief though mate. Rifampicin helps me, doesn’t get rid of them but defenitely brings them to a point where the pain is manageable most of the time.
hello thank you so much for your comment.
I think you are very brave to post so good for you for spreading awareness! I got this disease at 19 so almost 10 years and it just gets worse all the time and very painful! Mines only on my inner thighs so some days it’s hard to walk. Have had antibiotic s and steroid creams used several other topical creams but to no avail 😦
I am going to try tumeric capsules and see if that makes a difference!
I really feel for you and hope you thanks for making this site! Nice to know others feel the same.
Hello And thank you so much for your comment.
Wow. I can’t believe there are so many with this disease. I’m 25, male, from Sweden, and I’ve had this since 2009. It started after my father comitted suicide in 2009, when I was 20 years old. The stress is what triggered it Im thinking.
I didn’t know what it was, thought it was acne or something. It grew and grew under my right armpit, until one day it burst. I was shocked, had never seen so much pus before!! Right now I have it under both armpits (right is the worst), in the middle of my chest (between the breasts), and also between the butt and the scrotum.
I started doing research and found all sorts of diseases that I thought it was. I went to the doctor and he said I should take antibiotics. So I took it, and 7 days later I had to go to the emergency due to I shat blood for a whole day. When I arrived I had been to the toilet to do nr.2 95 times that day (yes I counted, ha!). I could barely walk. Turns out the antibiotics screwed my stomach up (it also did NOTHING to help me). I was there for 5 days on IV, I did another 100 times on the toilet before I got home. Thank god I got morphine though. Was a nightmare.
Still, two years after the first flare up, and with me bringing my doctors documents from the internet, information on HS, they said it was not HS. They had never heard of HS. It was then I decided to go to a private clinic and talk to a doctor specialicing in skin diseases.
I was there 1 minute before she said, “this right here is called Hidradinitis Suppurativa”. I almost cried. FINALLY someone who could confirm it. She said there were new laser treatments I could test. I was tempted, I still am. but I don’t know if it will help.
But after reading your blog, after seeing your pictures.. Man.. I know your pain!! I feel for all of you! It is a Horrible disease.
I hid it from my friends for a couple of years. But I’ve now shared it with my closest ones. Also the people I work with knows this, so that when I have it really bad, I might not need to do all the lifting for example. I can do the administrative stuff. I’m lucky I got such a job.
Also. My girlfriend since 8 years now is my ROCK. She understands, she comforts me, she doesnt get disgusted by the bloody sheets in the morning, or by the smell of it.. I wish everyone had someone to lean on, because HS is such a burden on it’s own.
To all of you, stay strong. Hopefully there will be better treatments. Until then, all we can do is support eachother.
And also, I know it is hard. but don’t be embarrased about your bodies and this disease. You are all beautiful people, I hope you know that.
Take care
D
(I don’t know how this post became so long. And also, excuse my english if I misspelled anywhere. I hope you’ll understand me 🙂
Thank you so much for your post. Thank you for sharing. I am sorry to hear about your father.
Hi! I found your blog today, thanks to an article about Karl Marx and HS (google satisfies my intellectual curiosity soo well). My stepson suffers from HS. I’m 61 and have had many genital boils over the years, but rarely have flare ups anymore. Mine started at about age 23, but were minor compared to yours (sorry). My challenge (besides the pain) was sitting! One of my worst was about the size of a baseball – the doc and the nurse got pretty well sprayed when draining it – LOL.
Mine have diminished since moving from central Pennsylvania to Oregon’s Willamette valley. Much less summer humidity here, which is a help to me.
Yes, I think this is very much tied to chronic inflamation.
Read a few posts again, especially D from Sweden. YES, I think stress is a HUGE factor.
It’s been about a year since I started following this blog, and have reported what has been helpful to me and to others. I finally found something that has been a HUGE relief. Rick Simpson oil, which has been purported to successfully treat cancers. I understand that many won’t or can’t use it because of legal issues.
But, I wanted to share my story so that is someone googles “hidradenitis and rick Simpson oil” ,that can find something. I started it and within 5 days my sinus tract (I only have one that has opened and wouldn’t heal, so I’m pretty lucky) healed up. I was on the oil for a few weeks, then a dear friend was diagnosed with a very aggressive cancer, so I gave her what I had. My tract did open up again, and I had somehow forgotten what pain it caused. I went back to bandaging it night and day, and wasn’t able to swim with my kids. I recently procured some more, about a week ago, and within 5 days it again healed that nasty, painful open wound. I still have some small cysts that are tender, but nothing compared to the pain from the tract! It’s healed over so well I was able to shave over the scar (it is on my bikini line).
I hope someone finds relief in this as well!
I have hs and mrsa with several out breaks and daily antibiotics. I’ve two kids a husband two dogs and own a business. My pain is like yours but I hide it. With constant body aches, puss, the stink, and itch
I just wish it would go away. Stay strong. And good luck.
Thank you so so much for making this blog and posting those pictures. I am 22 years old and during a trip to the ER I was finally!!! Diagnosed with HS. I started having these huge cyst like boils on my groin, inner thigh, pubic bone and under both armpits. My HS just recently got the worst it has ever been with over 20-30 breakouts all over my body and one very deep, and wide-open cyst under my arm that constantly drains and ruins my clothes. I have spent so much time hiding from people and not being social because of fear I will be judged and I am so tired of it. I just want it to go away. Or not to be at stage 3 anymore. Thanks for this place to just talk. It feels so good to know I’m not a gross monster, and that I’m not the only one.
Thank You for creating this blog. I too have been suffering from HS since my adolescence years…..so about 15-20 years now. I think that If the public was more aware of all of the pain we go through, both emotionally and physically that we would have had a cure by now. However many of my friends and family do not know the full extent of the pain or cysts I get on a weekly basis, so I don’t think I would have the courage to post my pictures as you have. I have a huge amount of respect for you! I wish I could be this brave. As I write this, I am reminded of a new cyst that formed today under my left armpit and 3 above my lady parts that will not stop draining and with this much pain, I find it hard to get a comfortable position sometimes. But I just wanted to say thank you. I know there are probably sooooo many more people out there like us that are ashamed to say anything and that may be why a cure or better treatments haven’t yet been discovered or researched at least?
Hello my friend and thank you so much for the comment.
I have never heard of this disease before. OMG. I am so sorry that you suffer from this. Please god let you find healing and relief! Delicate and very gentle*HUGS*!
Thank you for your kind comment.
my son also has this condition. He had surgery under his left arm in October of 2014 and had a wound vac on for several weeks. He had multiple areas under his left arm that had gotten worse over time. We went to several Dr. and they misdiagnosed this for several years. Finally he went to a wound clinic and that is how we discovered what he had. Surgery was his only option. We are now doing wet to dry dressings under his arm and it has healed 70% since surgery. He now has multiple sores in his groin area that I think will take the same treatment. I really hate to seem him have surgery but it may be his only option. He is very much in pain for this. He has a hard time walking due to the sores and they are constantly draining. He is ready to be done with this. He says the pain from the surgery was nothing like the pain before.
Thank you so much for sharing. Only problem with me is I had surgery on my waistline complete removal. After a little time it all returned. I now have more than before. But every person is different. Thank you again.
I have been suffering with HS for 15 years minimum. I was just diagnosed 1 year ago, too scared to go and find out what was wrong. I found a product online EMUAID. It definitely soothes and helps the pain, but its $58.00 for 2 oz jar! I’ve used it for nearly 3 weeks and need to order another one! I have a dermatology apt in May 2015, I sure hope there something that’ll help, I was told surgery is not successful either. With today’s medical technology, you’d think A DOCTOR might know something by now for us sufferers. I still go to work, mine leak all day/night as well. No smell though, thank God for that! I change bandages all day too. Sorry to hear for yours being extremely bad, I hope you’ll have some relief soon.
Hello thank you so much fort sharing. Please keep us up to date. Or if you ever have questions please feel free to ask.
Hello! Thank you so much for sharing your experiences. I have just been diagnosed with HS last week, and only have it under one armpit at this time. I cannot tell you how bad I feel for all of you because I know how bad mine hurts in just one spot! I cannot imagine the pain if in numerous places. I am hoping to keep mine confined to just this one spot! I have been reading everything I can get my hands on and trying different things. I am by no means trying to tell any of you what to do. I cannot imagine your pain and I feel for you. I just thought I would give you some ideas from the things that I have been reading about this horrible disease. I will include links to sites that I am getting some of my info from.
1. Tea Tree Oil. I have bought this at both Wal-Mart and Target. It is my “miracle”! You can put this directly on your skin but it will burn for a few minutes and then kind of numb itself. Or you can put several drops in a bath and soak in the bath for at least 20-30 minutes. I work for a Dr and asked him about tea tree oil and he did a little research on it and was amazed at all of the different uses for it. My grand daughter had Molluscum contagiosum, and we tried Rx Creams that I paid hundreds of dollars for and nothing worked until we tried the tea tree oil. I have friends that use it for “fever blisters” and they have said it is the best thing they have used.
Tea tree oil is known for its topical antiseptic and anti-fungal treatment or infection-reducing benefits. It also has antibiotic properties and helps aid against aliments such as skin infections. (please google “tea tree oil” to research)
http://www.keeperofthehome.org/2013/04/25-uses-for-tea-tree-oil.html
2. Melaleuca Oil. I just read this from another blog and am currently trying it. I have Melaleuca Oil from doTERRA. I am putting it directly on my UNopened cyst 3 times a day to see if this helps. Again, I am in no way telling you what to do or selling anything! http://www.mommymoment.ca/2014/07/pictures-hidradenitis-suppurativa.html
3. Bleach Baths. This is normally for Eczema, but it kills the bacteria on the skin to prevent infections. If properly diluted and used as directed, a bleach bath is safe for children and adults. For best results:
*Add 1/2 cup (118 milliliters) of bleach to 40 gallons (151 liters) of warm water — that will fill a U.S.-standard-sized bathtub to the overflow drainage holes. Use household bleach, not concentrated bleach.
*Soak from the neck down or just the affected areas of skin for about 10 minutes. Do not submerge the head.
*Rinse off and gently pat dry with a towel.
*Take a bleach bath no more than three times a week.
You may experience dry skin if you use too much bleach or take bleach baths too often. If your skin is cracked or very dry, any bath — including a bleach bath — may be painful.
4. Dial soap. Dial soap is the world’s first antibacterial soap. I am using this everyday during regular showers. It can dry your skin out though.
http://en.wikipedia.org/wiki/Dial_%28soap%29
5. Neosporin with Pain reliever. I am allergic to any tape and any band aides, so I have a hard time covering mine. My problem is that the skin rubbing together hurts so bad, so I found that coating it with the neosporin helps the rubbing pain. Also one Dr that I saw gave me the idea of using maxi pads and cutting them to the right size I need and sticking them to my clothes instead of my skin. I have not tried that yet, but thought I would put that idea out there for you if anyone else is allergic to the tape.
http://www.neosporin.com/products/wound-care-products/pain-relief-cream
Thank you so much for your time. I hope this helps someone! I wish everyone of you luck!!!
Good evening I have this problem for 30 years.
I discovered your site and realizes that all doctors who auscultated me for 30 years was useless
I am 47 years old and thanks to you I discover that I have since I was 16.
I am French and I have a question for you.
after trying doxycicline you have been a period of calm or a recurrence? after stopping the medication you have had a recurrence of the problem?
I went through antibiotics, ointments, the doxycicline, poultices, alcohol-soaked compresses to 90 degrees.bétadine etc ….
I had quiet periods from 20 to 35 years but it is still reappeared,
I read posts on your blog and I find many similarities with my case.
eggs, tobacco, peppers, milk is a problem. I try every day to understand .I remember when I was 16 to see for the first time these little buttons, it looked like a pink mosquito buttons and with time but returned bigger and purulent and then moving on thighs. each crisis ganglia wakes.
I have one last question: what is your treatment today?
sorry I do not speak American and the translation is very bad .thank you so MUCH …
without you, I would still be searching on the internet an answer ….
Hello. Yes if I come off the medicine the infection gets worse.
Hey i suffer from this too i just turned 35 and i have had this since i was 8 and had my 1st surgery at age 25 but since i came close to hitting 30 in 2010 i have had to have 45 major and minor surgeries and to top it off i also have osteoarthritis and unfortunately the wonderful state of South Carolina denied my disability claim saying that i can work i was simply a pill shopper i have been on pain meds 5 years now because the pain is so freakin unbearable so i understand what yall are going through
Thank you for sharing and enlightening me. What a strong person you are!! I know it must hurt…badly. I have cystic acne. i’m so sorry. I don’t find it gross. Good for you for being brave and giving the world a look at the condition. I hope you ffind relief. 😦
Hey my name is Jesus Osuna I live
In maui hawaii I have the same problem
I been having this problem for 10 years.
Everyting stared at the age of 14 and now
Am 23 years old. I have to go through pain every
Day some times I can’t even sleep at night
And not able to sit down. After I drain them out I get huge holes that throb all night long. It seems like my diet affects how many I get. I go to doctors and even other countries to get help but nothing works and I continue to suffer, you understand the pain. Do u take any medication for the pain, do u have any advice? Thanks
Runs in my family, had it for years, all family members are triggered by oranges, gluten and dairy. Other triggers may be unknown. Safeguard soap helps us. Went to dermo told to wear loose non cotton pants, good luck there. Some go away and come back same spot years later. I can feel the tunnels especially my belly and thighs. Take vitamin A it helps a little bit, have to take it for a long time to get results. Shaving makes it worse. Needles in them make them worse. Leaving them open (hard to do ) makes them go away better if you can get all the gunk out if it. Put some iodine on it to keep infection down. Live day by day. Moms wives tale says it’s mixed bloods, I don’t know, but it hurts. Hope we get a cure soon.
Every person’s triggers are different. All you mentioned I cut out’ll not ago and still no relief. Thank you for sharing.
Oh to the people talking about milk, fresh cows milk does not trigger this for me or my family, only hormone placed milk form the store.
Yes! Finally someone writes about adult acne natural.
Just reporting my experience with HS and biologics. I used to get the golf ball+ sized growths with daily drainage etc. I’ve tried two biologics (for ankylosing spondilytis).
On Humira, nothing changed for my HS. I continued getting the growths and no change was detected.
On Remicade, HS has died down considerably. No growths larger than a marble. Golf ball+ sized growths have shrunk to marble sized. Smaller growths have almost disappeared after a year; they are still there but I wouldn’t call them “active”, more like popping a pimple that never goes away now and then.
I still have the tunnels and have to manually drain and take care of the remaining growths, but it seems if I’m vigilant and aggressive with anything that may be a new growth I can stop them from developing before they get a chance to grow.
Scarring etc is still there but not as red.
So, for what it’s worth, I think Remicade has been effective for me.
If this helps even one person, great.
Thank you for sharing your story with all of us. This hits so close to home for me – I have been battling this disease since I hit puberty around 13. I am 30 now and it just gets worse. I have never been officially diagnosed with HS but with all of your pics and stories I know this is what I have been battling for years. It surprises me that with so many people who are afflicted with this disease that there is still so little information about it. It is also surprising to me that after countless doctors appointments and evaluations that no physician could ever tell me what was wrong with me. Thank you again for being brave enough to share your experience with HS I know it has helped a lot of us secure sufferers.
Wow thank you so much for the kind words.
I wrote on here a few years ago, when I was 23. I am now 25 going on 26. I still suffer, even worse than before. When I was pregnant with my daughter, the flair ups died down, but when I was pregnant with my son, it’s the worst its ever been, and I now have it worse than ever. I have been to see a dermatologist and she has put me on two types of antibiotics (Rimycin 300mg and clindamycin 150mg, along with a lotion called clindatech). They seem to be helping a lot. The lotion stops the itching (although it burns when you put it on). I have to stay on these for 6 months, so far I’ve only been on them a month but I will give an update when I have finished. The redness has died right down, there’s no weeping or massive lumps, just the odd little lump that’s about the size of a marble (some lumps I’ve had have been as a big as tennis ball no joke!) so fingers crossed it will at lest calm down and stop the flare ups from becoming to out of control. Any little bit of relief is something! Hopefully these antibiotics help me and a lot of other people ❤️
Please take probiotics and herbal antifungals (garlic, coconut oil or its components caprylic acid and monolauen, ginger, oregano, black walnut – you can buy candida herbal capsules with all these things in them – do a search on Amazon or iHerb). It would also be great if you do the diet outlined in the book The Candida Cure by Ann Boroch (available for about $11 in paperback – she also has cookbooks). There are support groups for candida overgrowth on Facebook where you can get a ton of information and support. I’ve been on the diet four years and I feel like a new woman! When you are on antibiotics, steroids, or hormones, those drugs kill off both the good and the bad bacteria in your gut. When the good bacteria is gone, the candida that lives in all of us can overgrow. As soon as it overgrows, things start going wrong with your body BIG TIME. I ignored all the symptoms for too long, and it became a systemic problem. I had dizziness, bloating, gas, food intolerances, couldn’t’ stand being around cigarette smoke or perfumes, ANXIETY major big time, brain fog big time, fatigue, and other unpleasantness. Many people with candida overgrowth develop an unpleasant odor that won’t go away with showers. If you are taking any antibiotics, you probably have candida overgrowth. Please read the book and take care of your body!
its like watching pictures and reading story of my HS xxx thank you for being brave to document that x
Hi I am so glad I’ve found this site I live in the uk I’ve been trying to find out for years what these are my doc just keep telling me they are cysts and keep filling me with tablets that don’t work and I just literally carnt sit walk or lie down I am as bad as you with them or probably worse I’ve got probly about 10 on my head 15 under both arm pits 5 on chest 13 in groin and same rash as you 8 or 9 in between bum cheeks 10 on top of legs n 5 on face I am crying with happyness ive found other people with them I thought i was a freak I carnt leave house incase other people are laughing I get angry with them and cause I think they are laughing at me I have 2 children and carnt pick them up or play games with them makes me so sad and depressed and other people get sick pay of government but they can still walk around and play with their kids but will not give me any what you think about that I am so glad I found this site thanks
I suffered brutally with HS for MANY years – it started in 1976. I would have 50-60 cysts in my groin/buttocks/underarms/breast areas at any given time. I worked full-time and had a very active love (and sex!) life. I am 68 years old now – and my HS has been calm for the past year. I found a lot of relief in large doses (1000 mg 3x a day at least) of turmeric, one capsule of strong botswelia serrata per day, all the anti-inflammatory herbs I could find. I was on antibiotics for about 41 years, and now I am allergic or resistant to ALL antibiotics – which is not a good thing. Beware of antibiotics. I was also put on drugs similar to Humira – and that killed my immune system – I have to get infusions of IVIG every three weeks now. My best advice is to wear only natural fibers (cotton, wool, linen, silk, rayon; rayon is man-made but it is a natural fiber). I also do the diet in The Candida Cure, a book by Ann Boroch – and this was a real game changer in so many ways. I have been on this diet for four years now, and my body is healing like you wouldn’t believe. My BEST advice for active painful lesions is to sleep with a wet washcloth directly on the lesion. (I put a large plastic bag on my bed, covered with a towel, then you don’t have to worry about getting the mattress wet. I preferred cold, wet washcloths, but warm would work just as well.). The moisture causes the lesion to open up – sometimes overnight and sometimes it takes 2-3 nights. It can also provide some relief with the cold or heat. Finally, I was referred to an excellent dermatology surgeon who removed my sinus tracts. Since that surgery a year ago, I have been lesion-free (FINALLY!). I could be mistaken, but I think HS can also cause problems such as arthritis or fibromyalgia. If you do the candida diet, you will be amazed how wonderful you feel. In hindsight, the things I most regret are (1) the constant use of antibiotics (try natural antibiotics such as goldenseal instead), (2) the full course of radiation I tried to get rid of HS, (3) the Cellcept and Imuran I took – these are drugs that are similar to Humira. I realize Humira works for HS – just know you may lose your immune system completely. In the moment, I would have done anything to stop my HS. I was super clean with my body, clothes, etc. I used cornstarch and baking soda as a deodorant. Be sure to nurture your soul with hobbies and events you enjoy – for me it was live music concerts, gardening, hiking, going to movies, cooking. I know the candida diet is a rough one – but if you have HS, you probably have candida overgrowth – which is usually caused by antibiotics, steroids, hormones, etc. The diet has been the number one most positive thing I have ever done for my body (I had precancerous cells in my gut and they have disappeared since going on this diet. There is no part of my body that is not better since going off sugar.). I wish all of you good. health and love.
I am so sorry you are suffering from this horrible autoimmune disease. I have HS but not even close to the severity you do. Look into foods that trigger a flare up if you haven’t already (nightshades are a common offender). You are in my prayers. I truly hope that you find some relief someday 🤗
what are coa for cbd
Hi everybody , can anyone advise where I can buy Healing Balm CBD Balm By Koi CBD?
I am just learning through this site about HS. When I was about 21 I had my first break out in 1976 as a boil on my inner thigh. I went to the doctor and he said it was an ingrown hair follicle. When it happened again, below my arm pit he put me on antibiotic. I also have inflammation due to overuse of antibiotics and eating too many carbs. No doctor could ever tell me what it was. Ever since internet came about I would look up the symptoms to no avail. It wasn’t until I heard a commercial for Humira did I look up the diagnosis and found your photos. I suffered a lot in the armpit area, under my breasts and inner thighs. Now, that I’m overweight they can pop up under my belly/groin. Since I am 66 I have made a lot of changes that seemed to help from different suggestions from doctors and stuff I read. Most importantly, I stopped wearing polyester and rayon to bed or sleeping on anything but cotton sheets. I try to wear natural fabric as much as possible and no longer use antiperspirants, only deodorants and medicated powders. I was told once by a dermatologist that we are meant to sweat and antiperspirants prevent that process so that might have had something to do with my “boil outbreaks.” Since sugar also appeared to be a culprit, I only eat whole milk, plain Greek yogurt (instead of the sweet yogurts) to overcome the havoc the use of all those antibiotics did to my body. Some hopeful news after 45 years is that I seldom get one anymore, maybe once or twice a year. When one occurs it’s usually under my breast or in the groin area so I put tea tree oil on it and hope it doesn’t hurt too much. I can’t apply a bandage to my groin area so I just let it go through the drainage and wipe it with hydrogen peroxide frequently. And the scarring is starting to fade. As I lost weight , the scarred tissue also shrank up so it doesn’t look as bad. Thank you for having these posts to bring awareness to me after 45 years!
Feel bad for you my friend, although I do not have HS my wife did have it, it was so bad under her arms pits she had to have skin grafts, it was in both groins as well & I suffered along with her. She was diagnosed with breast cancer a number of years back & when we went to the radiologist for her first radiation treatment he saw the HS & told her the radiation will get rid of this terrible disease, he also said it will flair up for the first few treatments then you will see & feel a big difference within a month or two. She had 29 treatments & a short time later she was rid of HS. She also survived the cancer scare.
Thank you for sharing.
Hidradenitis Suppurativa 
Leave a reply to MYPREROGATIVE Cancel reply