Hidradenitis Suppurativa

About

Hello my name is Carlo, I have been suffering with HS for over 36 years. I am 51 years  old. My condition is getting worse day by day. I am to the point I can not hold a job, even dating is a problem. I have become a homebody. People who do not have it ask why? Well for one the pain is massive, imagine cutting your skin open and shoving a baseball in the wound and sewing it up leaving a pin hole for it to try an come out of.

Second is the drainage, mine never stops leaking ever. I was told by the mayo clinic my main hs section will never heal. so this is something I have to deal with the rest of my life. I have to change these bandages all day long every day even in the middle of the night, if i do not my clothes and my bed are soaked with blood and pus. And my main area happens to be on my rear end so sitting for more than a few minutes at a time is impossible.

Third is the smell, yes this stuff stinks. If my leak gets past my bandage which it does it stinks and i mean man it is horrible. It is embarrassing and there is nothing I can do about it. So needless to say I do not go out. I have not dated in sometime now as well. How do you explain this to someone? It is not easy. Most HS sufferers keep this to them selves but i can’t anymore.

And of course most people are skeptical and say there has to be a cure. Well trust me there is not i have tried every medicine, alternative medicine and every potion available and nothing! Of course i would like to get rid of this problem it sucks! Some people have mentioned why do you not get a skin graft? Well a few reasons. The first is my skin has this everywhere except for my face thank god. I have it in my armpits, groin, legs, and butt. There is literally no place on my body to graft skin from. It is literally impossible.

I took this quote from another HS site. I could not have said this better myself.

“It has been reported that as many as 80% of HS sufferers are diagnosed as clinically depressed. Depression is common amongst people who have to live in chronic pain. It can be treated with medication, but to cure the depression completely the reason for the depression must be removed. As there is no known cure for HS, this is not possible. “

Another quote from hs-usa.org.

Because of the drainage which may have a foul odor, fever and fatigue caused by acute inflammation and the physical restrictions caused by pain and skin deformation, people often cannot work, drive, exercise or even perform day-to-day tasks, and are ashamed to go out in public. HS sufferers may go through severe bouts of depression, avoid public and inter-personal contact, become sedentary and often overweight.

More people need to know about these problems. HS is not talked about enough so there are no studies to find a cure. I have seriously been to doctors that I have had to educate on the disease. That is pretty scary.

DOES HS HURT? Most people like I said just do not realize the pain. Some doctors have told me to take advil, etc. My case is so bad that does not work!

Abscesses may be as large as baseballs in some people ( I have this constant), are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation, culminating in drainage, often leaving open wounds that will not heal.  The pain is debilitating, pressure pain; however, pain occurs 24 hours a day, 7 days a week for HS sufferers during flare-ups, and is difficult to manage.

85 responses to “About”

  1. manuel Avatar
    manuel

    Hi my name is Manuel and had my first HS boil lanced when I was only 1 year old, but have been dealing with since I was 12. I am now 57 and have had 10 major surgeries due to HS. Have been reading your history with HS and can tell you I am finally on disability, have not worked since 1999 and nearly died from this hell in 2011, only surgery in 2012 on seven areas saved me. Other major illnesses are arthritis, irritable bowl, diabetes, depression, low testosterone, anemia almost did me in in 2010 and 2011. Please have your blood checked for a low red blood count, I was needing blood transfusions every three weeks and getting 3 pints of blood up until I had my surgery in Jan of 2012. I can tell you that surgery is the only solution that has worked for me. I have not found anything that will help with the pain, at one point in 2011 I was takling 4 vicodin, 6 ibuprophen and corona beer daily to make it through every day. The pain from HS is not understood by medical professionals, but my arthritis doc did try. You need to find a good plastic surgeon that knows how to handle HS, they are hard to find. Fell free to ask me any questions at ellaguno@att.net, i may not have all the answers but have dealt with this for 55 years and I know what you are going through.

    Reply
    1. hshelp Avatar
      hshelp

      Hello Manuel, thank you so much for the info. On my end having a very rough day. 2 new places flared up today.

      Reply
      1. yen Avatar
        yen

        oh dear!!is too late for me till today i am confident to say i am having HS only after seeing your videos and pictures~my discharge stained on the bandage, and the the thingy looked exactly like yours. And i experience the same pain. Haiz..My first HS was on my left breast two years ago, due to the the improper care from myself initially and later from my family physician(as i got no idea what it was, it was my first time), this thingy becoming deep ulcerated wound which took >1month to heal . i was referred to breast tumour specialist due the non-stop pus and blood discharge. luckily it was not a tumour. Then later part of my life, this HS start to grow non-stop, over my breast, chest, abdomen and armpits. Somemore i have keloid skin, so all the HS successfully left their life evidence on me~From a pimple size till it matures and able to be drained fully, mostly it took around one and half month. The weird ones is it wont grow concurrently, usually one gone then only another one come. Sometimes i get to rest for few months before another one comes. Thanks god ! However just few weeks ago, IT COMES AGAIN on my breast!; just gone through with the active inflam and pain period and currently doing the drainage; dun ask how i survive with the pain on wearing bra haha, sleep and move around with pain and have to pretend you are fine when working.
        Alright enough of my story. I really hope to seek advise from you in seeking medical treatment. I went for few skin specialists, they never diagnose me with HS. Some say is folliculitis or boil or acne. (as i am having face acne too) A surgical doctor once did excision for me and the discharge was sent for microbiological examination; no significant finding of bacteria strain but just moderate pus cell and blood~even the latest doctor i am currently seeing at singapore for my face acne also cant help with this HS(my self diagnosis hehe). he said is body acne the severe one (even shown him the picture, the video and told him this thingy is really pain). He asked me to get the steroid injection if i want it. oh gosh! i always hope there is a doctor can tell me what it is~ i really faith out and so do self treatment at home, with normal saline cleansing and fucidin application.
        So the doctor from mayo clinic you are seeing now is from which discipline? is it dermatology? my problem is who should i seen for treatment? you are very lucky to have good doctor at your country who able to diagnose and treat you properly.
        Last but not least, from your experience, you are telling me this thingy is not curable really?? dun scare me out please……

        thanks for your patience for reading and replying ^^

      2. Barby.espy Avatar
        Barby.espy

        PLEASE CONTACT ME! I suffer too, and when the new research papers (Nov 2015) came out…I hunted down the drs that contributed like dogs. I finally was able to email back and forth with one of the Drs, and she is in Toronto. She contacted me yesterday and I desperately want you to contribute to what she is asking of me! xoxoxo Barby

      3. HShelp Avatar
        HShelp

        Hello not sure what you’re talking about?

  2. Stu Avatar
    Stu

    Hey Carlo, my name is Stu and I am 32 and I live in Ireland, just found your blog – looks like you are having a tough time at the moment. I saw the photos of your under arms and it brought back memories, I had about 3-5 of those lumps under each arm when I was 18, I had plastic surgery under both arms excision of both underarms and then skin grafts, they took about a year to heal fully but since then I have not had any issues under my arms, have you been given the option of skin grafts?

    Reply
  3. Laura Avatar
    Laura

    Hi Carlo, I trully understand how you feel. I too suffer from HS and have been since I was 15 and now I am 35. My brother and my mom also suffer from it so I guess it runs in my family )0: I’ve been doing a lot better since I’ve eliminated dairy, processed foods, white flour, and processed sugars. I’ve researched that with these types of foods it causes inflamation and therefore we might be allergic to these bad foods. I’ve lost some pounds and see a slow and steady healing. It’s all about dedication and wanting some relief but it takes time and patience. So maybe you should try this if you haven’t already done so. I wish you the best and please don’t feel you should stop dating or meeting someone because I’m married and so is my brother and our spouses are awesome and understandable.

    Reply
    1. hshelp Avatar
      hshelp

      Hello Laura. Thank you so much for your post. I have tried so many different diets over the years gained and lost weight as well. For me it seems nothing works. But like you both of my parents somehow had hs. With both of them having it it have me a very severe case. With dating I at this point have zero confidence. But I will never give up.

      Reply
      1. Laura Avatar
        Laura

        I sent a reply but not sure if it posted. But, all I could say is keep up the faith and make sure that when you try something new like a diet “stick to it” as long as possible. I read that in order to see healing it takes one month for every year that you’ve suffered with HS.

      2. hshelp Avatar
        hshelp

        Thank you so much for your post.

  4. Keri R. Avatar
    Keri R.

    I Stumbled upon your site today while searching for answers to my newly acquired HS. Your pictures moved me to tears. While the tears ran, I prayed for you. I hope that one day, you will be healed!

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for your comment. It truly means so much to me. I am so glad I can share my story with nice people like you.

      Reply
  5. Ian Clifford Avatar
    Ian Clifford

    I’m so pleased to have found your blog. I really must thank you for being so open and honest about your HS. I have been suffering with HS for about 7 years and have only told a few close family members and one friend. Keep up the good work my friend.

    I don’t know if this will help, but my HS improved a little when I stopped drinking coffee. Three years ago I read somewhere that coffee is bad for HS, I noticed an improvement quite quickly, but it could be a coincidence.
    Also, since I discovered ‘Sanex Zero’, I never wash with anything else.
    It might just be a lucky phase I’m going through, but little changes have allowed me to control my symptoms pretty well recently. I don’t mean the HS has gone away, it won’t, but it hasn’t got much worse for about a year.

    Thanks again, I will be following your blog from now on.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for checking out my blog.

      Reply
  6. notalone Avatar
    notalone

    Your blog reminds that I am not alone…..thanks for the support

    Reply
    1. hshelp Avatar
      hshelp

      Thank you!

      Reply
  7. maureen shaw (@scorpiomo) Avatar
    maureen shaw (@scorpiomo)

    hi Carlos
    i don’t have this disease .My boyfriend does. It is mostly on his groin area and lower stomach.When we first started dating he told me about it.I had never heard of it. He keeps it bandaged most of the time and i don’t have a problem with it or him. So never give up hope of finding someone who like me don’t have a problem with it.I found you doing research for him.I want to help him feel better.He talks about the pain and drainage and it seems everyday his little friend rears its lil head. I am looking for relief. Something to lessen his pain and outbreaks..We live in st Louis and are having a hard time finding a doctor to treat his.Antibiotics don’t work,he really don’t want surgery.Hes not one to go on a diet , I see you had no success with that anyway.We have tried different soaps turmeric, boil ease nothing helps.I have found a lot of information on pharmacy grade fish oil( krill oil) anyone have any success with that? thanks for the video about the scam, i went there about an hour ago .My thought is if its a true cure the large pharmacy companies will be fighting to get it.

    Reply
    1. hshelp Avatar
      hshelp

      Hello and thank you so much for your comment. It truly does mean the world to me. I am searching dailt for new doctors or studies. Hopefully one day they we get a hold of this disease so we can finally live pain free.

      Reply
    2. Ashley Cooper Avatar
      Ashley Cooper

      Hello, my name is Ashley. I read that you live in St. Louis. I do as well, I also suffer from hs since 2009. I had cyst/boils before that time but would come and go. Everything hit the fan in 2009. I had a cyst so bad on my tailbone that it split my butt cheeks and was the size of a golf ball. I was 20 years old then. After my first hospital er drainage and insicion in 2009, my tailbone kept getting cyst. My HS got worse after I was in a car accident in 2012. Now I’m getting them everywhere. My tailbone, both sides of my groin, my left armpit, in between my breast and under my left breast. Last year alone I had 8 surgeries at Barnes Jewish hospital. This condition I feel is ruining my life. I will be 26 this year. I have to deal with the pain from this condition and pain from my HS. I cant get my second epidural steroid injection for my weakness and numb and pain in my back legs and feet (also intervertebral degenerating disc disease, severe sciatica) because i seem to aalways flare up around the time of my appointment. The doctor can’t do the injection while having an active infection due to the added risk of potential meningitis with the injection. I was told last week that if I dont get my second shot next appointment then I will have no choice but to have back surgery and a double hip replacement at the age of 26. I have no choice but to miss that appointment. Why? Because this morning, I had surgery to remove my whole left armpit. It will be left open for four weeks and then back to surgery to apply a skin graft to the area. Only thing in my left underarm is fat and muscle. Nothing else. Although I don’t know you, I just wanted to say that it takes a strong man and/or woman to stick by someone with this disease. I just want to thank you for being there for him because this disease is very debilitating as you have seen. Also try going to Barnes Jewish hospital. They are awesome. I see the dermatologist here and the surgical staff here for all my surgeries. The surgical clinic 314-362-1300 Karen is the scheduler and shes awesome.

      Reply
      1. hshelp Avatar
        hshelp

        Thank you so much for sharing. It truly means allot to me. Please keep us posted on your progress.

  8. Nallely Avatar
    Nallely

    Hi Carlo,

    I am happy I found your blog I always thought I was the only one with this disease. I’ve had h.s since I wa about 11-12 years old it basically started around when I hit pubriety but It got worse over time. When I was younger the doctors said it was balls of fat and what not it was frustrating when they didn’t know what it was. When I was in high school and it was getting bad my pedratician sent me to a specialist of skin I’m guessing I don’t remember what he specialized in but I do remember he was a specialist, anyway it took a while to get a appt booked with him and I remember he saw me for less than 15 minutes and told me that it was balls of fat and that I had to lose weight ! I was so mad at that point. It wasn’t until a couple of years ago when my current doctor told me what it was but he said there isn’t much research on it an that there is no cure. He wants me to take acutane to see if that will help but I am trying to explore other options. I’ve been searing on the internet again and found a foundation to donate money for research I hope it legit and this website isn’t scamming people as I plan to donate. This gives me hope for a cure. Thank you for having this blog and sharing your story.

    Reply
  9. Mimi Avatar
    Mimi

    Hi Carlos,
    I came across your blog while trying to research for my boyfriend.
    He has had a draining fistula in his axilla, which was initially the size of a golf ball.
    He has had it for a few months now. I am myself a doctor, but have never heard of this condition.
    He went to a doctor who prescribed oral isoretinoin and topical clindamycin, but there has been
    No improvement. Reading up your blog and seeing your pictures brought tears to my eyes.
    I am praying for you. Never lose hope. Good luck.

    Reply
    1. Jess Jackson Avatar
      Jess Jackson

      don’t listen to the docs.. if he has a cists the size of a golf ball it is NOT gunna just go away with anitbiotics. Go to A and E, show them, explain the pain and they should insise and drain it under geneeral anastetic! xx leet me know

      Reply
  10. bridget Avatar
    bridget

    My husband has been dealing with HS for over 13 yrs. This past summer the hs flared to the point where my husband could no longer walk, raise his arms, sit, stand, etc. The drainage was terrible. He was in alot of pain. He under went his first surgery in June of 2013 up in Rochester MN at Mayo hospital. They cut out 7 areas. just to give you an idea one are was 22 cm by 14 cm by 16 cm deep. They removed alot of nerve ends as well. He was in the hospital till Aug when he went in for skin graft surgery. He was going okay but then in November the incision area along his s5omache became infected. He under went his 3rd surgery to reopen his stomache and his left groin area. He healed from that surgery. but now his immume system is weak so in January of 2014 he was rushed to rochester with cellulitis. He was hospitialized for 7 days. He was given 2 strong iv antibotic treatments 3 times a day to calm the infection. when he came home he was weak and slowly regained his strength. He made it through Febuaury with no major infections. Well, this past Thursday he was rushed to rochester again for celluitis infection due to the HS. He is still there going through the same treatment as before. Please also remember that in between the surgery he was still having new boils forming and draining. He has some in his buttlocks that make it difficult for him to sit. His right groining area is loaded of new boils ranging in the size of a dime to the size of a golf ball. I have taking care of him when he is not in the hospital. I know what this diease goes to a person. It is a non-cureable diease. Not much we have done will control it. My husband has been on antibotics since May 2013 with no relief. His activity level has decreased. I will say that the surgeon in Rochester has been wonderful with us. He has dubbed my husband his favorite patient. I could go on and on about this diease but just wanted to let you know that we understand what you are going through.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for sharing your story.

      Reply
  11. Jess Jackson Avatar
    Jess Jackson

    HI, i also have HS and suffer around my arms very badly and some in my groin. I completly sympathise with you its so many dressing changes a day for you, i honistly understand your pain that you are in i suffer but not as bedly as you. You need a massive hug and thank you so much for sharing your story with me. Do you go to the hospitaol and have your cists insesed and drained? i do this every time i have a cist it means that the hold there is packed and absorbes any more pus and can be changed more easily and should drain the majority of it out. I am having skin graphting surgry on my left arm within the next two months as you and i should both know that HS is mainly caused by the blocking of the sweat glands, my glands are going to be removed under my left arm first and lets see the results! have you ever had surgery? or have you ever considered having surgery? even just insision and drainage? xxx all the best.

    Reply
    1. hshelp Avatar
      hshelp

      Hello and than you for your post. Yes I get them cut open all the time. My case they are cut and left open for good the ones on my butt. But I do get new ones all the time all over my body. Also yes I have had surgery with no success. But thats just my body it may work perfect for others. Please keep us updated. And thank you again.

      Reply
  12. Humberto. Avatar
    Humberto.

    Hi Carlo. First sorry about my english I will do my best.
    Mi name is Humberto I have 40 years with hs stage 3 in buttocks and groin. I¨m 55 now.
    Tired to try a lot of treatments and surgerys I start two months ago to use a topical product combined with clindamycin solution. The smell and the leaking amount have a 70 percent reduction.
    We know there is not a cure, but I apreciate your opinion if you consider helpfull to reduce the smell and leaking.
    I am not taking antibiotics, analgesic now except when the things goes worst.
    I want to wait more time to see the results. My main mistake was not take pictures when I start, I have to do this and sent to you the pictures if you dont mind, to help me to decide if really exist a reduction of the lesions.
    Sorry again about my english, I live in México since I was born.
    By accident I start to use the solutions.
    Sincerely, yours.
    Humberto.

    Reply
    1. hshelp Avatar
      hshelp

      Hello Humberto, thank you so much for your post. Can you give me more info on what you are trying?

      Reply
  13. iAM SARANG Avatar
    iAM SARANG

    Hello Carlo,

    I apologize in advance about the length. I came across your blog while doing some research and I come to ask your opinion.

    I haven’t officially be diagnosed with HS, simply because financially I can’t afford to pay my copay right now….I’ve had ‘flare ups’ under my arms for years, i just thought that they were in grown hairs that got infected. about 3 years ago, while working in an auto parts store, i had a MSRA (a type of resistant staph infection) boil surface in my ear canal (talk about pain!!) and the doctors lanced it, gave me antibiotics and I haven’t had another in my ear since. However, in the time since, i’ve seen an increase in these abscess’ under my arms and even on my vulva/panty line area In fact, my underarms (where the creases are) look incredibly similar to pictures I’ve seen online (especially with the scarring). I have a very scarred area on my panty line, right next to something that constantly drains. My underarms (yes both 😦 ) the scarring is near the crease, while the ones that always drain are lower. When i try to explain this to my doctor he dismisses it as MRSA, and will prescribe me the same antibiotics and then recommends that i lose weight. He doesn’t seem to understand that due to the location of these things, movement is either impossible or incredibly painful (and his solution to that is to premedicate with aspirin or something. Which could in the long term damage my liver)

    I will admit that i did gain a lot of weight in relatively short period of time (over 80lbs in one year), but my hygiene is on point. Recently, i’ve changed anti-bacterial body wash with Tric-something listed in the ingredients (not the anti-bacterial soap with the Bac-something ingredient. I’m not home to look at it right now). After I shower, blow dry my problem areas (mainly groin area which hurts like hell to have my legs really wide), then apply a thin coat of bacitracin or neosporin, and cover it with cotton towel. I was using tea tree oil but its kind of expensive. I saw a noticeable difference in the size of the abscesses’ and my leakage stopped….since HS does seem to bacterial based, as opposed to viral, maybe this will help.

    If you don’t mind me asking (feel free to email me if you would not like to post the response here):

    In your experience have you seen a increase/decrease in flare ups in correlation with weight gain/loss? Have you ever had MSRA or any other staph infection? What about cellulitis, furunculosis, folliculitis, sebaceous cysts, trichilemmal (pilar) cysts, or epidermoid cysts? Are the location of your flare ups always in an area where there is hair, and if so is there a lot/little hair in the area? Do you have any tattoos and if so do you flare up near them? Do you have any other medical issues: diabetes, auto-immune disorders, skin conditions, etc?

    I am literally at the end of my rope and I hope that if i can find some kind of similar i can convince the doctor that i’m not crazy.

    I hope you find some relief

    XOXO, Sarang.
    xosarang@gmail

    Reply
    1. hshelp Avatar
      hshelp

      Hello and thank you so much for sharing. In my case I do not think weight has anything to do with it. It started in my case when I was 16 and weighed 145 pounds. I truly believe your Dr is wrong you most likey do not have MRSA. It sounds like you have a dr who has no idea about hs. No i have never had MRSA. Also I have none of those other types of cyst as well. Yes most of my areas are hairy unfortunately my whole body has a hair problem lol. I do have diabetes, but had HS for 20 years before I became diabetic. But I do have stomach and immune problems. The Mayo Clinic thinks my HS may be linked to stomach and immune problems. Please feel free to post any time or write me directly as well.

      Reply
  14. Ms. B Avatar
    Ms. B

    Hi Carlo,

    Unable to sleep from my HS pain , I came across your blog. I must say the pictures are unfortunately very familiar. Could you please give me your email address? I would like to discuss this further with you.

    Thank you,

    Ms. B

    Reply
  15. Azure Wyatt Avatar
    Azure Wyatt

    Hi, I ran across this blog while searching for ways to bandage my armpits yet again. I have been dealing with this since my early teens, I am now 36. Unfortunately, I seem to know more about this than the local doctors that I found. 😦 I have been on so many antibiotics and pain medications that it is unreal. Now I am in serious trouble as I had to drop my medical insurance because the doctor refused to continue seeing me without payment and I am doing all that I know to do. They talked me out of surgery a few years ago saying it was only 20% effective and that the risks of infection were so high that I’d be better off just to deal with it. I think they just didn’t want to mess with me anymore. I have started developing allergies to the most common antibiotics, I can no longer take doxycycline, Bactrin, or keflex. And I have started developing allergy blisters when I use medical tape or band aids to cover the lesions. I did do a few years of accutane about 8 years ago. It did seem to help slow them for a year or so but now they have returned with a vengeance :-(. I have 3 drains sticking out of my armpits now as I type. They have me wrapped up under my arm and around my neck to help hold the bandaging in place but it is creating a huge knot on the opposite side of my neck that is so tender I can’t turn my head. Anyway, that’s how I found this blog while I am lying here trying to figure out alternative bandaging to help all lives some major discomfort. It’s so easy to get discouraged. My husband is dealing with I guess but it’s so difficult for me to go to the surgeons and have then cut me open without being able to numb me alone (my husband says he stand go with me because he can’t stand to hear me screaming). I feel like everything is crumbling and I sit waiting on the next one to become ready to be drained :-(. I feel like a whining bitter bitch but quite frankly I am fed up with trying to explain why I have bandages or why I rarely ever shave my body, I’m tired of trying to make people understand when half the time I feel like wringing their necks and telling them to loss my ass because I am hurting and I’m tired of being nice to make them feel more secure in their pain free lives. Sorry to be a rambling bitch, I’m just done with this disease I’m done with the pain, unfortunately the honest truth is that’s it’s not done with me. I’m bitter yes I’m in pain and then 2 weeks ago my 19 year old daughter how is mentally retarded developed her first cyst in her armpit (as if she doesn’t have a hard enough life.) so now I am bitter and extremely pissed off because their is nothing I can do except make the next doctor appointment, endure the next draining session without anesthesia, and deal with the endless pain. And now I have that same future for my baby girl 😥

    Sorry for being so negative, It honestly was not my intention, I just got a little carries away in my own self wallowing. I pray for some miracle if not for me then at least for my baby.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for your comment. I can relate to everything you’ve said. Especially the stuff with the tape.

      Reply
  16. Xochi Avatar
    Xochi

    Thank you very much for sharing your life story with us, Carlo. I also have HS; it began during puberty and I’m still dealing with it 30+ years later. After being misdiagnosed for years, and being too embarrassed to tell other doctors about my predicament, I found a doctor who was open-minded and made me feel comfortable enough to explain what I was going through. She immediately looked up the symptoms and correctly diagnosed it as HS. Nothing has helped with the outbreaks, but at least I have a name to put to this debilitating disease. Currently, I’m going through my worst outbreak in months (huge abscess in my right breast that’s been draining for 12 days and counting). I’ve been washing my bras on a daily basis, but can’t seem to get rid of the lingering odor. Is there anything that I can use to do so? Or will I have to discard them? As you can guess, I’ve been staying in the house, so as not to expose anyone to the putrid stench.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for sharing. Stay strong!

      Reply
    2. Bev Brewer Avatar
      Bev Brewer

      Try soaking and washing your bras in white vinegar. I hope it works. White vinegar is cheap and I always use it in my rinse cycle when I do laundry. There is no vinegar smell when the clothes dry. Good luck.

      Reply
  17. April Avatar
    April

    Hello,
    First I must say I really appreciate your blog I will frequent it regularly. I am a HS sufferer and have been suffering since age 16 and am now 32 but it was misdiagnosed for most of those years. I take antibiotics, Humira injections and I get Kenalog injections and nothing is helping it seems to be getting worse and I’ve tried hiboclens soaps acne washes and still no relief. Now I get laser hair removal which is said to slow the disease but I don’t think that’s working. I was a guest on the tv show The Doctors about my disease. It’s getting to the point where I don’t wanna go out get dressed because I’m constantly in pain or have drainage. On top of this My Mom is battling cancer so I have to help her….so I really appreciate the site and the comments. May I ask what treatments are you receiving and are they working to manage your symptoms?

    Reply
  18. fedup Avatar
    fedup

    Hi , I know how you are feeling. Fed up and frustrated and spending a lot of money hoping something will work. Recently, I decided to try a herbalist ( what the heck do I have to lose) and after 11 years I have begun to see some kind of results. For he past 2 months my arms have been behaving and I am functioning daily properly. So far so good and I am hoping all goes well so I can finish my degree in peace.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you so much for your comment.

      Reply
  19. shana Avatar
    shana

    Hi Carlo. I’m Shana. I’ve had HS for 28 years. I’m having a rough time emotionally, and found great solace with your blog. Thanks for having the courage to speak about this illness.

    Reply
    1. hshelp Avatar
      hshelp

      Hello Shana. Thank you so much. Your comment means the world to me. I’m so glad you found my blog.

      Reply
  20. Cullen D Avatar
    Cullen D

    Hi Carlo….my name is Cullen. Ive never even heard of HS but stumbled onto ur blog looking for something completely unrelated. I do have one thing to share with u. its not a book or cure or any kind of scam/sell/or even a give away. its regarding the pain part of this horrible disease you have. my email will be below. id rather not share this in the open but if u shoot me an email i will reply with what im referring to and u can do with the info what you will.

    Reply
  21. Jim Avatar
    Jim

    Hey there Carlo, I’m Jim. I came across you on You Tube and though I do not have HS I was curious of this affliction and as is my normal, educated myself on it a bit. Sorry you have to deal with this, yes depression I can imagine would be a partner to the horrible discomfort of every day with HS. I hope perhaps someday that if no cure presents itself that it could subside just a little for you. Take care now!

    Reply
    1. hshelp Avatar
      hshelp

      Thank you very much for your comment and for reading my blog.

      Reply
  22. Beckie Stirton Avatar
    Beckie Stirton

    Carlo have you tried taking a bath with some bleach in it? My moms family has had many issues with what we have called cycts for lack of a better name. I have had them constantly cut out since I was a teenager and my youngest daughter was even born with one on her nipple (which she ended up loosing). mine is not near as severe as yours but I have a brothers who’s is. I have always wished I had went into dermatology to help him as I have watched him and now my children have suffered over the years.

    Reply
  23. Bev Brewer Avatar
    Bev Brewer

    I stumbled upon your blog. I have never heard of HS. I have Fibromyalgia, which I have under control. There is also no cure and have had to figure out what works for me. I am so sorry HS exsists. I want to share something that helps me a lot, from the inside to the outside. I am hoping it may help you and others. Since I became ill 6 years ago I have been on my own to find help. Drs. aren’t much help. I’ve had lots of issues with my skin, rashes, etc. The only thing that has helped is Coconut Oil. You can buy it at the grocery store, where the cooking oil is. You can also take it internally. Which I take coconut oil in pill form. Believe it or not, my Cardioligst says I have the cleanest arteries hes ever seen. You can also use it for cooking. It certainly can’t hurt to try it. Hopefully it will give you some relief with your skin. Check out Coconut oil on the internet, there is a lot of information. This may be a shot in the dark, I’m hoping this will be of some help. Best Wishes for you, Bev

    Reply
  24. Dead Avatar
    Dead

    hi, Carlo. While I don’t have HS I do suffer severe chronic pain due to a triple disk cage and complications. I hate it when people underestimate the exhaustion of dealing with unending pain. Find a good pain team if you can and get your pain under control. When my pain gets ahead of me I literally can’t think. Once your pain is under control at least, maybe, other parts of your disease can be less stressful? Either way, I wish you the best.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you. Yes I do need to find something. Cause I can barely handle daily life.

      Reply
  25. Melissa Avatar
    Melissa

    I was surfing YouTube and stumbled on one of your videos, I didn’t know what your disease was so I googled it then watched more of your videos and ended up here. I am now looking at my own chronic condition differently, my pain while sometimes very bad is no where as severe as yours must be. I admire your willingness to share your story with others, to try to warn others of scams and provide information. Thanks for sharing. I’m going to check out that juice site you recommend too.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you!

      Reply
  26. Laurel Register Avatar
    Laurel Register

    Last April I had surgery to remove 8 softball size lumps….the Dr’s called them tumors from underneath my right arm. My HS is going bonkers and i’m still fighting for disability. Its gotten bad underneath my belly due to the weight loss i’ve had. I want you to know I empathize with you and understand about the stench of the leakage and drainage.

    Laurel

    Reply
  27. Cassie Avatar
    Cassie

    I haven’t read much on here yet and just saw your YouTube video. I too have hs. I also have bipolar. Bipolar came first. so I know all about depression. It’s rough having both as well as other conditions. I am only stage one and was dx early but the physical and psychological pain are the same. I guess I just wanted to let you know that I think you are very strong and brave for showing your video. Thank you for showing it. Now people may get a glimpse of what hs is. You are a true hs warrior!

    Reply
    1. hshelp Avatar
      hshelp

      Thank you. Your comment truly means allot to me.

      Reply
  28. Sayge Avatar
    Sayge

    Like most of the folks I stumbled upon your blog from a video on youtube. I also have HS (and several other issues). I was diagnosed last year at 28. I want to thank you for being so brave and sharing your videos. You are doing a great thing by stepping up and showing others what it is like to have this disease. Thank you.

    Reply
    1. hshelp Avatar
      hshelp

      Thank you for the comment. It means allot to me. Please stay in touch.

      Reply
  29. Anne Avatar
    Anne

    Hi Carlo,

    I came across your video on YouTube and landed on your blog here. I had never heard of HS and I am shocked that something so horrible is incurable and inflicts such discomfort and pain forever on people. I suffer from depression, weight gain from the depression, and anxiety. The medication has caused me to gain 100+ lbs. in under 18 months. Needless to say, the weight plus the number of meds that I am taking prompted me to look into holistic ways to protect my internal organs (am 48 years young).

    I also have toenail fungus on two toes. Kinda abrupt statement here in my story, but it has an interesting outcome. :). So I get this idea off of the Discovery channel about curing toenail fungus since all the medicines barely work on it. I go to the vet sites and discovered they use chlorine dioxide to cure thrush or white something disease on horse hooves. Believe me, this will make sense soon, I really don’t love typing this much :).

    So now, I am starting to read more about the causes of toe fungus. Most likely it shows up in people with autoimmune disorders or people who’s immune system is weak. I then find out that it is a bacteria and that the reason it is difficult to treat is because of the biofilm on the nail which prevents medicines from getting into the nail bed where the bacteria live. I think, hmmm…may be my toenails will work like a horse hoof. Crazy?

    So I google removing toenail fungus with chlorine dioxide and find that someone has proven that it works on toenails – actually cures it and a new nail grows out healthy in 3 months. Okay, so now I am on the hunt to see if I can buy this stuff online and I bump into a site called something like, “www.cancercoach.com” or something and find that HIV patients in the 80’s had begun building their own treatment protocols by changing their diets dramatically and by drinking chlorine dioxide in specific amounts within an 8 oz. glass of water. Why was I pumped about this? Because cancer patients have cured themselves with a combination of natural protocols also included on this site. The reason it works is because they found out that cancer is caused by bacteria within the cell of the body. In other words, medicine struggled with penetrating the microfilm of the cell wall to kill the cancer bacteria. It turns out that chorine dioxide is cheap, and when it is consumed as a tonic in small amounts with water, it penetrates the cell walls and kills the cancer bacteria. It also kills micro-organism cysts, and I believe some fungi.

    Okay, so what? Well my immune system is weak now and I am soaking my toes in a chlorine dioxide solution for 7 days and my fungus is falling off of my toenail. Gross, huh? But I started thinking, I don’t have cancer, but I am going to cleanse my body with a couple of these cleaning protocols as if I did have cancer. And then I will load my system up with organic vegan vitamins and minerals taken in liquid form, including pre-and probiotics. Here’s the question…have you tried what they call “the Dirt Cheap Method” for curing cancer to see if this chlorine dioxide can kill the bacteria that fundamentally causes HS? I am wondering if it would work? Or at least bring the symptoms under better control?

    It has also cured herpes, mitigated HIV, cured cancer, and even the gas from the chemical mix is used to sanitize animal pens and moldy rooms. It kills mold and it works from the inside out but also from the outside in. It is gentle on the system and skin. So I am wondering if this stuff could work for you?

    Sorry for the long post, but I couldn’t sit here with this information (which has existed since the 80’s) and not say anything with everyone suffering so much with this disease. Especially when I found the approved patent for the use of chlorine dioxide on toenail fungus, because it works.

    If you are moved to try this out, let us know how you did. Hope this is helpful as an idea or option, anyway.

    Anne

    Reply
  30. Kathy Avatar
    Kathy

    Hi Carlo,
    I found one of your videos and decided to come and take a look at your website. I also liked your Facebook page.

    In your post above you mentioned you have HS on your legs – you don’t have this on your lower legs by chance do you?
    About 5 years ago I had a very bad flare up – groin, backside, thighs- and it also showed up on my right lower leg and the top of my left foot. I didn’t even think HS could be in those areas but that is what the docs said it was because it had the same characteristics as the other areas – flared rapidly, spread by tunneling, etc. I spent a week in the hospital twice in one year for that flare up, was on iv antibiotics for several months and then oral antibiotics for more than a year.
    After that, I hadn’t had a bad flare up (I just mostly had some drainage from the non-healing areas) until this past November. The non-healing area started to drain a lot more and then within two weeks I had a big area of HS on my left lower leg.
    The first time it showed up on my leg and foot, they let it heal up but this time they had to do surgery to remove a big area from my leg. I am currently recuperating at home.

    I am going to spend some time reading your other posts and checking out your videos. And thank you for being brave enough to tell and show the world about this terrible disease.

    Reply
    1. HShelp Avatar
      HShelp

      Hello thank you so much. Actually the first area I ever had at 16 was on my lower left leg. It has healed and appears every few years but luckily fades.

      Reply
  31. Lottie Avatar
    Lottie

    I am 34, living in the uk. I have had hs for 15 years, but only had a diagnosis for 5 years. My mother has hs so I defiantly think there is a genetic link!
    I have felt ashamed, dirty, embarrassed about my condition, I have been so embarrassed that I’ve avoided my cervical screening tests (I do have them but it is so embarrassing) having found your website today you have inspired me to not be ashamed. Your a brave guy and what your doing for us hs suffers is amazing, thankyou.

    Reply
    1. HShelp Avatar
      HShelp

      Hello, thank you so much. Yes its definately genetic. My mother and father both had HS as well. Thank you again so much.

      Reply
  32. Lisa D Spear Avatar
    Lisa D Spear

    I’m so sorry you have to go through this. Do warm Epsom soaks help? Also would adult diapers be easier for you I know that’s a real downer but it might be easier. Also, the medication that draws out puss from acne Nd cyst have you ever tried that? I can’t believe science hasn’t found at least something to control this. It must be awful both Ontario and mentally you are so young. I’m going to educate myself on this I just can’t believe there’s no hope. What is the cause? I will keep you in my prayers .

    Reply
    1. HShelp Avatar
      HShelp

      Hello thank you so much. I tried all of those options. They don’t work. A bath helps ease pain as little. Diapers can’t hold the amount of fluid leaking I’d literally need to change then every thirty minutes. They are designed for like just a few ounces of fluid. Drawing medicine is also not helpful since it’s already pouring out and also it’s not good to put on an open sore. Thanks again zoo much.

      Reply
  33. Fiona Avatar
    Fiona

    Hi Carlo,

    I stumbled across your video on you tube. At 32, living in Ireland and I have been living with this condition for 10 years. After 3 surgeries I am now heading for number 4. I live in constant pain, sleepless nights and constant oozing cysts and constantly feeling sick. I spend endless amounts of time at accident and emergency having them drained.

    I want to thank you for sharing your story and helping people understand what it is like to live with this condition. Your blog and videos have made me see that I’m not alone in this battle.

    Fiona

    Reply
  34. Sue Avatar
    Sue

    Hi Carlo,
    I am almost at a loss for words, my heart breaks for you. I am 45 and have suffered with HS since I was 16 and so I truly understand and feel your pain. It also runs in my family, my father, one of my siblings and now very sadly one of my 3 children are affected. Like you I have tried more medications, treatments, diets etc but HS beats them all… 😦 at times it feels so hopeless and lonely but I do my best to keep on keeping on. So I just wanted to say thank you for saying it out loud, for giving us somewhere to feel less alone, for standing in the face of it to give others support. You are incredibly brave! In 30 years I have almost never shared about HS with anyone outside of my immediate family. Even my closet friends don’t know because I feel so embarrassed and ashamed of it. But you’re right… I didn’t do anything to make this happen… Maybe your bravery will rub off and I’ll manage to find the courage to stop hiding my pain. Until then thank you again for making me feel less alone 🙂
    ❤ Sue. ((((Hugs))))
    (If you were in front of me I'd give you a real hug… Because everyone deserves a real hug now and then 🙂

    Reply
    1. HShelp Avatar
      HShelp

      Thank you so much for the kind words.

      Reply
  35. Jason Turner Avatar
    Jason Turner

    Dear Carlo,

    My name is Jason and I work for a US based medical market research company, Flince Research + Design. I am currently trying reach out to HS patients to invite them to participate in a opinion based market research interview. The interview consists of a one time, 2 hour phone conversation. The interviews are completely confidential and each participant will receive $250 for their time and valuable opinions. Interviews will focus on your experience since diagnosis.

    I am hopeful you would be interested in taking part.

    Interviews will take place in early April. We are hoping to speak to 15 HS patients overall.

    Please feel free to email me at jturner@flinceresearch.com or call me directly at 773 383 9090. I can answer any of your questions.

    Thank you and I hope to hear from you soon.

    Jason

    Reply
  36. Casey Avatar
    Casey

    Dear Carlo,
    Thank you for bringing attention to this disorder you are brave because I for one kept HS hidden even from my family and friends because of the possible label and what they would think about me. I’m an educated women and yet I was scared, like a Jr high child, that they would think I was the stinky kid. So again thank you for opening people’s eyes regarding this disorder for all of us. I have had HS for at least 16 I feel like it’s been longer but just didn’t realize what it was. I realized it when I was dating my husband because I was so embarrassed because of the not only the very sight of the “places” (I used to get them on my face – when I wore makeup) but the smell and heaven forbid one of them begin draining at a bad time. At that time I just thought they were pimples or hormones so I didn’t talk to anyone or a doctor. In fact, I didn’t talk to anyone, except my husband about about them for years until I one that needed drained by my “female” Doctor who told me that I just need to make sure I always wore cotton underwear and to keep my private area clean …. Really I bathe twice a day morning and night how clean can a girl get. My grandmother told me my cousin had similar issues so I spoke with and slowly other family members came out of hiding. So I don’t know if this is a genetic disorder, hormonal, or that we are just the unlucky ones … I just want a cure or help not just for me or you but all of us. I know burying our heads in the sand doesn’t help but the assumptions that we are dirty or that we have some how brought this disorder on ourselves causes us to keep the problem hidden. Any information or gudiance on how to get in a clinical trial or any treatment would be appreciated or even any advice. I have tried different soaps and home remedies but things only seem to calm (not stop) the disorder for about 6 months or so.

    Reply
    1. HShelp Avatar
      HShelp

      Thank you so much. That means the world to me. Please check out my hs Facebook. You can communicate directly with me there. https://www.facebook.com/hshelpnow/

      Reply
  37. Anna Avatar
    Anna

    Hi Carlo, thank you for what you do.
    Can you recommend me a good Dr. for HS? Not sure if I have HS, but looks like I might have it. I live in Phx west valley . Thank you in advance.

    Reply
    1. HShelp Avatar
      HShelp

      Hello Anna thank you. If your insurance allows mayo clinic they are literally the best in the world. We have them in Scottsdale. If not see Dr tan at Beatrice Keller clinic in Sun city West. He is amazing and knows hs very very well.

      Reply
  38. krystina Avatar
    krystina

    I would love to be able to email you, or write to you. I do not have HS and hope I never do but I would love to get to know you.
    Krystina

    Reply
    1. HShelp Avatar
      HShelp

      Thank you so much. If you ever need to talk please contact me here. I’m always available for support or advice. https://www.facebook.com/hshelpnow/

      Reply
  39. krystina Avatar
    krystina

    Stay strong

    Reply
  40. phoenix Avatar
    phoenix

    I would love to talk with you , while I do not suffer from what you do, I do suffer from something in silence that is caused by a medical device and it seems noone cares.

    Reply
  41. Dacid Avatar
    Dacid

    Hi anyone from Liverpool England on here I would like to talk to people about this I have it bad in periuna bottom and fistuals in rectum any advice.

    Reply
  42. Jennifer Avatar
    Jennifer

    How are you doing with the depression?

    Reply
    1. HShelp Avatar
      HShelp

      Good not depressed at all thankfully. Thank you.

      Reply
  43. Jennifer Avatar
    Jennifer

    Hi Carlo, How are doing with the depression? Is the HS still in the lymph nodes or has it gotten any better? I’m sending a ton of good wishes your way!!!

    Reply
    1. HShelp Avatar
      HShelp

      Thanks no it’s still there.

      Reply
  44. Tasha Williams Avatar
    Tasha Williams

    I just saw your you tube video. Im not sure that I dont suffer
    from this disease as well. I will have ro do some research and discuss it further wiith my doctor. I too suffer from depression and Borderline Personality Disorder. Depression os such a hard disease to deal with on its own.
    All my best

    Reply
  45. Monica Avatar
    Monica

    Hi my name is Monica, and my wife is suffering with hs. She’s been in and out of the hospital to get everything drained for a few years now. So, the last visit we had there was a abscess on her stomach and they told her she had to get surgery for further treatment. I’m just a little concerned if the surgery would even help. Especially with it being expensive, and insurance barely covers it. I know there’s no cure for it but does it just get worse during time? What are your suggestions. Thank you for reading

    Reply
    1. HShelp Avatar
      HShelp

      Hello in my opinion. Surgery is not the best option I’ve had surgery before and it has returned to the same exact area. But that’s not the case with everyone with some people it is 100% successful. With me the only thing I found that help at is Humira. I would check to see if your insurance covers that first. Do some research on on it as well. It has side effects lots of them but that’s like every medicine. If you can contact me on my HS help now . Search that on Facebook and you’ll find me. It’s a community all about H.S. And you can also contact me there directly.

      Reply
  46. Susan Avatar
    Susan

    Hi Carlo! I am not an HS sufferer, however I do have a rare autoimmune disease called Ankylosing Spondylitis. I was reading about HS & I saw that TNF-inhibitors are sometimes used for this disease, specifically Humira. I find that HS has several similarities with AS. So wanted to ask you about it. I see that you’ve been to Mayo Clinic, have they suggested TNF-inhibitors, or laser therapy? Thanks for sharing your experiences with this disease!! Very informative. Praying for you!!

    Reply
  47. Anon Avatar
    Anon

    Hello,
    I have tried charcoal masks on the areas where I have hs and it helped me with the scars and reduced the inflammation a little. Charcoal can draw out some of the bacteria in our pores so it has been useful managing the Hs for me.

    Reply

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