Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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HSchich 03/22/2013

Hello all,

My name is Ruth...I'm 28 years old. I've had H.S. for 3 years now (Feb this year made it 3 years). I have it on my armpits and one small leakage on my tailbone. I don't know what to do anymore. I've seen many doctors and all they suggest surgery. I've seen the surgeries on YouTube and read many blogs where people say to stay away from surgeries as it returns. I am seriously considering surgery on my armpits. The area is only getting worst, darker, more scarred and keeps leaking blood and puss/smells horrible. I shower 2x a day and use vegetable oil on it (cotton ball dipped on it) to keep the area from drying too much. I am tired of wearing baby flannel wipe under my armpits as it needs to be changed at least 3x a day. I am currently not working (was laid off) so I am considering surgery. I'm really afraid. I've seen huge scars on people and although it looks very bad, I'd take it over the HS. Has anyone had surgery and have not seen signs of HS returning?--I mean NO breakouts whatsoever. Also, did they take a graft from your legs? I don't want scaring on my legs, just to have the HS return...so not only would I be scared on my legs but have HS all over again. Lastly, is there such thing as laser surgery? Please help me! I'm so desperate and this is ruining my self-esteem, I'm not the same person emotionally at all. Thank you

deleted_user 03/22/2013

I had laser on my tailbone about 6 years ago with no return! I am seeing the same surgeon now that it has cropped up so bad in other areas. I feel confident this is the only way for me. I've had horrid drug reactions and the little surgeries do nothing they just invite more hs to move in next door :( my dr showed me photos of another patient he did the o2 laser and pig gut grafts on and it looked amazing so I'm so excited to see how I heal this time!

Good luck my thoughts are with you

HSchich 03/22/2013

Thanks. So you would not recommend removal of the skin type surgery? I am going to make an appointment to see an HS doctor and will ask him questions about the laser. My HS is VERY bad. I have overlapping scars (stage 3) so not sure if laser would even work for me. I think he Dr. may consider surgery.

deleted_user 03/22/2013

The laser I'm speaking of is the total skin removal( skin as in all tracking tissue) then the laser inside the wound to prevent grow back of tracks. That is the only thing that has worked for me. It's extreme but worth it!

HSchich 03/23/2013

Oh ok, now I get it. I'll definitely look into that with my Dr. I know I'm going to need surgery this year. Thanks again

deleted_user 03/23/2013

I had surgery on 2/13 under my right arm. There were two tracks removed. Two weeks ago I started with a new sore next to the scar tissue. I am now on doxy antibotics and a antibotic cream - this is not clearing up - my derm doc said can do a steriod shot in the break out, but I'm not looking forwarde to that. I haven't decided yet. I am so disappointed - I had hoped that i would have at least a year without any break-outs. This was my first surgery and I am stage 3 - the pain wasn't that bad - I have had worse with the breakout. I hope it works for you if you decide to have it removed.

HSchich 03/23/2013

shaann1956,

I'm sorry surgery did not work for you. I hope it clears up for you soon. It's one thing to have surgery and have no results-- very frustrating and that's what i'm afraid of. Thanks for your input.

deleted_user 03/24/2013

Thanks, H Schich - I hope your surgery goes better than mine.

deleted_user 03/29/2013

I've had hs return in scars too :( it's the worst. The only success I've had is with the laser and one scar that he sealed the inside with some kind of acid .... Somehow burning the internal tissue is key. I will never let my derm who only takes out the tracks touch me with a scalpel again!!

deleted_user 03/30/2013

Thanks. I started reading up on the laser after I read your and others prior experiences - the boards really do help.

ShannonA 03/31/2013

I've had two surgeries so far. My first..on my left armpit went wonderfully. The doctor cut out all of the affected area and then basically sewed everything shut from the inside out. I had a lot of stitches, and for awhile my armpit looked like a patchwork quilt, but I have not had any recurrence of HS in that armpit so far, this surgery was done last October.

My right, unfortunately, done in February, was done by a different doctor. For some reason he chose to sew up the inside but on the outside only glued it together. Well..as can be expected..spots started to open up, it got severely infected (had to go on Cipro) and stitches on the inside that were supposed to dissolve inside the body did not and now they are migrating their way out of my body.
For some reason I get the feeling that this new doc either did not do due diligence on removing ALL the affected tissue or his idea of just gluing the incisions up was NOT a good idea.

I had hoped that since the new doc had worked under the old doc that he might would have taken a clue from the last..but I guess not. I think a large part of it is making sure that ALL affected tissue is removed...if you leave even the smallest amount you are just sentencing the patient to the same horrific HS merry go round ride with the added dash of surgery to boot.

No grafts for mine. I have scarring in my left armpit, but since there is no HS there anymore I don't care.

HSchich 04/03/2013

ShannonA,

Thank you for the response. That's great one of your armpit is HS free for almost a year now. I'm sorry the other armpit was not successful. It does sound like a bad idea to glue the outside skin. Thanks for letting me know this, bc if the Dr. I am seeking suggest this, I will reject. I would like my armpits stitched inside and out with no graft. Are you considering another surgery on you right armpit? Have you healed nicely in your left? I agree with you, I'd rather choose scarring over the pain that comes along with HS. My armpits are severely scarred and the wounds are open dramatically...so yes, I'm definitely going to have surgery.

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