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I would like more information about Surgery for Hidradenitis Suppurativa?

Posted , 48 users are following.

chuckles27
chuckles27

I am due to have surgery for my Hidradenitis Suppurativa in my groin on both sides, my consultant has not given me much information about the actual operation, he just keeps saying he will not cure me, i do believe he will be removing all the damaged tissue and possibly removing sweat glands or at least part of it, i am just wondering if anyone has had this procedure done and what exactly happened and what happened after? how long did it take to for you to recover?

2 likes, 84 replies

84 Replies

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  • snowhound3
    snowhound3

    Posted

    Hi Chuckles - I have only just discovered this site so am probably too late in giving you the information you ask for. I am 51 and an HS sufferer. I developed this debilitating disease in my early twenties, resulting in severe boils and abscesss in both sides of my groin, the right one in particular. I had tried cortisone injections, antibiotics, you name it, nothing worked long term. Then when a hospital doctor suggested surgery I went for it and for me it was definitely the right decision. If I recall it was a messy operation as the operation sites required a fair amount of drainage and the healing process seemed rather slow. But personally, for me, I can highly recommend it. I have had a few minor lumps occur in the groin region since but they have been fairly minor and healed up well on their own.

    My HS went into remission (with only an occasional outbreak of much less severity) for almost 30 years. And I almost thought I had kicked it. But unfortunately, only a month ago the thing has now come back with a vengeance, this time under my left armpit. I had a lump grow to the size of a golfball which burst and was so painful. It healed but is now replaced by two extremely painful marble sized ones. I shall wait and see whether they are the last to crop up, and if not I shall seriously consider surgery again. It is so very hot where I am living and I so miss wearing my sleeveless tops and dresses.

    I hope the surgery will be a success for you as it was for me - gave me a new lease of life. Please let me know how it went. You are in my thoughts.

    • mikecrisco
      mikecrisco snowhound3

      Posted

      I go in this wed for surgery. I am not looking forward to the pain but need to have it done. Have you had it and how are you doing. Thanks Mike

      One of few we are

    • soulchilld.ll
      soulchilld.ll snowhound3

      Posted

      Woa, I feel more comfortable knowing that I was not the only dealing with this issue of frequent boils in the groin area. My first occurrence was in HS and I'm currently 20 so I've been dealing with it for years. It honestly has impacted my self-confidence body wise, but I'm glad that I had surgery to remove the sweat glands although it took a long time to find an actual diagnosis.

    • deanza92
      deanza92 soulchilld.ll

      Posted

      So sweat glands is the issue ? I was unsure if it was sweat glands or the hair follicles..is it safe that you no longer sweat anymore ??
  • chuckles27
    chuckles27

    Posted

    Hi Snowhound3 thank you for replying, i have not had it done yet, i'm going in a week Thursday, my consultant does not want to do it as he can not cure me, my mum came in to the appointment with me and we had a bit of a set too with him which resulted in him agreeing to do it, his concern is that it could come up somewhere else but i am now aware of the condition i know what to look out for and how to deal with it.

    My GP has said the consultant can remove my sweat glands in that area apparently if they do it well they can just remove the damaged part of sweat glands, is that what you had done?

    I hope my surgery is as successful as yours was. Thank you again for replying.

  • snowhound3
    snowhound3

    Posted

    Hi again Chuckles, My dermatologist didn't agree with my having the surgery either - he referred to it as unnecessary butchery and instead wanted to go on treating it with painful steroid injections, Roaccutane and antibiotics, all of which only partially helped and only for a short time. Funnily enough, it was the medical consultant at the hospital who said surgery was the only option. And he was definitely right. I was in so much pain I could barely walk a lot of the time - it was destroying my quality of life. After the surgery I felt like a different person.

    I think I may have had the sweat glands completely removed but to be honest I can't remember as it was so long ago. The scarring was pretty bad at the time but has faded somewhat over time. And it sure beats what was there before. Your consultant is wrong in not wanting to do the operation - nothing else worked for me. Yes it is incurable but it doesn't mean you will necessarily get them somewhere else because of the surgery. And you may be fortunate like me and go into remission for many years with only a small occasional outbreak which was easy to control.

    Unfortunately my left armpit is now an absolute mess with two large red inflamed marble-sized lumps and another one starting to form. I had a very stressful year in 2013 and am wondering whether that has caused the condition to return after so many years.

    Best of luck for your surgery and tell your consultant I can highly recommend the operation - it completely changed my life for the better. Please let me know how it goes. If I recall it wasn't a very painful operation, but then again I think I was in so much pain prior to the surgery that I probably didn't notice it lol.

    Feel free to email me if you like. Sometimes it's good to have someone to chat to who knows what it's like to suffer such a terrible condition.

    Emis Moderator comment: I have removed the email address as we do not publish these. If users want to contact each other outside of the forums or exchange email addresses please use the message facility.

    • Wingnut76
      Wingnut76 snowhound3

      Posted

      Hi snowhound3 have been living with hs for 15 years and it's getting worse idk what to do to treat this I have it in both arm pits my right the worse I was put on doxycycline but it makes m sick I live in Oklahoma and it's hummid the Dr here wont do surgery idk if it's because I get Medicaid or what ... Idk what to do

  • geekalicious
    geekalicious

    Posted

    I am waiting to see a surgeon about my armpit as it is pretty much constantly in the grip of HS. I have breakouts in various places including the groin but the armpit...well yuk doesn't cover it. I have done a fair bit of reading including from the excellent The Hidradenitis Suppurativa Trust who have loads of literature on the subject. It seems that the best surgery involves taking away the entire depth of skin from the trouble area making sure that all the tracts are removed along with the glands. If it is large a skin graft may be done. Smaller areas are dealt with as an open wound. I am looking at the skin graft scenario. In either case the surgery seems to work wonders and provides a massive improvement in quality of life. For some the issue comes back but slowly and the op is still worth while for the period of remission it gives you.

    Chuckles you were so right to stand your ground. Having an area removed doesn't cause it to pop up elsewhere. If you get a new site after the op you would have got one anyway. It is a genetic fault of the sweat glands with the apocrine sweat glands being the most troublesome. This is why they appear in the groin/breasts/armpits. Having said that I have had 2 which were non standard (ribcage and back of upper thigh) but they were not recurring unlike the groin, armpit and under breasts.

    I can't comment on recovery times but having had one abscess that took over 6 months to heal I don't think it can be worse than that. Going by the NHS website on a full thickness skin graft, "The skin graft will usually be held in place using stitches, staples, clips or special glue. The area will be covered with a sterile dressing until it has healed and has connected with the surrounding blood supply. This will usually take five to seven days"

  • sarahsweet123
    sarahsweet123

    Posted

    I have suffered with hs for 8 years now . I get lumps like golf balls. I got desperate enough to try the bob back protocol , I zap my lumps with micro current and they reduce in size same day and go with second zap within a week . i want laser treatment though to try prevent outbreaks
    • cali1986
      cali1986 sarahsweet123

      Posted

      Hi there just wondering what success you have had with the laser treatment?
  • susan01175
    susan01175 chuckles27

    Posted

    I am thinking of having this surgery too.  I hadn't had an "outbreak" I guess you could call it, for over a year.  I did find that the previous time I got one, was right after I had chocolate.  I had swarn off cholate thinking it could be a cause, and I really I was right about that.  But the more I read here, the more I think I need to quit coffee too.  I can switch to ice tea or something.  I'm so glad I found this site.  I feel so alone with this condition.  I know some people have way worse things than this, and I try to tell myself that.  But this condition makes me so sad.  I think I must have eaten something with chocolate because it's back with a vengence.  I think I will talk to the doctor about the surgery. 

    • BethGA
      BethGA susan01175

      Posted

      Hi Susan, I had a very successful surgery a year ago on my left armpit, and I am about to have another surgery on my right armpit and right groin.  I'm looking forward to the surgery, even with the healing, because I know I will get rid of this terrible pain.  Just wanted to offer you some words of encouragement.  

    • Amy-25
      Amy-25 BethGA

      Posted

      Hi i was just woundering what you had done on your armpit as i am going to get it done soon and dont know what to expect
    • BethGA
      BethGA Amy-25

      Posted

      My surgery was under general anesthesia...as I assume yours will be too.  The surgeon removed all the damaged tissue, lesions, and sweat glands.  He closed the incision with a skin flap taken from my back.  When I woke up, I wasn't in pain at all.  Just felt like a wad of cotton was stuffed under my left armpit...this went mostly away with time as the surgery healed Abe.  And it healed very quickly.  Because of the flap closure method, I did have two surgical drains for about two weeks.  They were nothing more than inconvenient...you have to empty them and measure the output and record it every four hours or so in the beginning, then it gets to only two times a day.  Do you know if you're having a flap closure?

      I was not in a tremendous amount of pain at anytime.  Granted, they did give me pain pills, but I didn't need them very often and didn't even use them all.  

      I was able to shower the next day, even with the surgical bandage over the closure.  

      I spent only one night in the hospital.  If you have a reclining chair, you might want to sleep in it the first night when you come home.  It's just easier to get up from when you need to go to the bathroom or walk around a bit.

      That's all I can think of for right now.  If you have any other questions, feel free to ask.  

    • Trich25
      Trich25 BethGA

      Posted

      I have HS terribly under both armpits and and am considering surgery. I'm very afraid of the recovery time though and if I'll still be able to breastfeed and hold my newborn and deal with my 2 year old toddler who still thinks he's the baby. These things hurt so bad and I get outbreaks back to back and have terrible scarring. I have several tracts that cause me to have several cysts at once.

    • BethGA
      BethGA Trich25

      Posted

      Recovery time will depend on the kind of surgery you'll have.  Do you know if they'll be closing the surgical incisions with skin grafts or letting your body heal the surgery wounds on their own?  If skin grafts, recovery time is a couple of weeks, but you'll likely have surgical drains put in that will need to be emptied a couple of times a day in the beginning (and you'll need help with that), lessening to only morning and night before they remove them.  You'll need to talk to your pediatrician, but I'd think breast feeding might be difficult because of the pain medication you'll likely need to take after surgery.  The good thing is, I had immediate relief from the HS right after surgery.  It was definitely worth doing.  I know this must be a difficult decision, but if you are in so much pain you're finding it hard to care for your children, I'd advocate surgery.  Best of luck with your situation.  As we all know, it's a difficult one.  Let me know if you have further questions.  I'll be glad to answer any questions that I can.

    • Trich25
      Trich25 BethGA

      Posted

      Thank you so much for the info. I actually go for my first consult next week. I will let you know what I decide after that. I can say that these things are very painful and I can't wait to get relief.

    • Amy-25
      Amy-25 BethGA

      Posted

      Hi

      Im not sure how they are going to close it up i have an appointment with the plastic surgeon in may to see what they are going to do

      I cant wait for it to all happen though as im getting loads of flare ups at the minute

      Thank you

    • sarah42192
      sarah42192 BethGA

      Posted

      Hi I just wanted to tell you how helpful it is reading this. I have a consultation on the 27th for an op on my left armpit. I'm quite nervous but reading this has put me at ease abit. I've previously had an op on my bottom to remove all infected tissue etc and it worked I've not had any abscesses on my bum since the op although it wasn't very smooth sailing and I had quite a few difficulties which is why I felt worried about the op on my armpit.have you had any problems since you had your op?

    • cree82801
      cree82801 Amy-25

      Posted

      Hello I just wanted to ask you how exactly did they close up your wounds?
    • deborah206
      deborah206 BethGA

      Posted

      Hello my daughter has been suffering with HS for years. She recently had the first one her left armpit about 4 weeks ago. She's healing well it's just the groin area that's really causing her incredible pain. She's schedule to have gratin surgery this week to address the horrible outbreak that's into her thigh area. I wanted to see how you are doing and to get an update.

      Thank you,

      Deborah

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