Hidradenitis Suppurativa

Hi everyone,

I read people's stories on this thread and felt the need to write my own story. Reading other people's harrowing stories both scared me and made me feel lucky... if you can call having a milder story to tell than some of you had lucky....

I'm 38 years old, female, have been diagnosed with HS for 8 years. Mainly I got the lumps in my armpits but they were relatively small and managable. The ones on my left armpit were recurring all the time and I was put on long courses of antibiotics by my GP (I was fortunate enough that he had a nurse working for him who previously worked for a surgeon who deals with HS, so she was very helpful to me), which would keep it at bay, shrink it, but as soon as I was off the antibiotics, they would come back. Eventually I had a surgival procedure in my left armpit, that was about 6.5 years ago, didn't need skin graft, had about 15 stitches and that healed really well and now you can barely see the scar.

I've had no major recurrances for years. I changed my diet to a healthier one, rarely eat meat, just fish, veg and carbs, eat plenty of nuts, whole wheat, fruit and yogurts.
A year ago I started going to the gym and dance classes and shrunk from a size 20 to a size 12, losing over 4 stones in the process. My skin had cleared up, my secretions reduces to a few blackheads here and there.
I recently started laser hair removal and saw this as another way to reduce any lumps coming, which usually form or start near infected hair follicles/ingrown hairs. I have very curly hair, which I understand is something shared by many HS sufferers.

About 2 months ago, a serious lump came up in my groin. It was horrendous, big, angry and red, the size of a golf ball. I was in denial for a bit, I was so angry it came back! I had nearly forgotten I had HS! Finally went to get it seen to yesterday. Was sent straight to A&E of a hospital, where I spent an entire night in the waiting room. Got it lanced and drained this morning by the loveliest nurse practitioner who was very knowledgable about HS. She did the whole thing with local anasthetic and laughter gas and it was relatively painless and she was lovely keeping me talking the whole time so I forgot to hurt... Luckily it wasn't infected at all, just inflamed, and I don't need antibiotics. Hopefully it will settle down again but if it doesn't, this time around I'm not messing around with long courses of antibiotics that knock the socks out of me, but don't prevent a recurrance. I'm asking for surgery straight away. Maybe its a radical approach for some, but my belief is if you get it while its still not so big and remove it, maybe the skin grafts won't be necessary, and if you get it all, it may not come back.

I've read all about your advice on various courses of treatment and also did my own research. I think some of the anti-inflammatory (anti-TNF-alpha]) drugs are too drastic for me and I'd be afraid of the damage to my immune system. I know that for some people the risk is worth it, but I don't feel I'm there yet... hopefully will never have to.

I just wanted to say to people who may have just been diagnosed and are reading this thread feeling scared by some of the more extreme stories, that not everyone has such a severe experience, mine has not been too bad, I've had one surgery, not needed skin grafts, had a quiet few years (which must at least in part be attributed to the changes in my diet and overall fitness) and its now just come back. Hopefully not for long! I'm determined to do everything that I can to reduce the effects of HS on my life and not let it control me. I used to be very conscious of the scar in my armpit always wearing sleeves and avoiding sleeveless tops. I then didn't care anymore and since then, I've met at least 3 women on a night out who correctly identified it as a HS scar as they had similar ops/scars too! 2 of them I knew as acqaintances, but never knew they had HS. I guess you don't speak about it much on a night out! Seeing the scars made me feel better that there are others out there going through the same thing. Not so isolated.

I'm happy to have found this thread and will come back to it now I know its there...

all the best to you all.

lockman wrote: »

@CC,

Welcome aboard. Glad you found us.

Just wanted to say thanks for what you posted above, especially what is highlighted in bold!

That is a very important point. Different strokes and all that. Not everyone with HS will need surgery & grafting etc. Many people manage just fine without any need for surgery.

Thanks again.

@lockman, thanks for your kind words. Thank you for being so active on this thread, its got a real sense of community. I'm not one for facebook or support groups, this thread is what I've been looking for.
I was so scared when I read it at first, I had a bit of a panic attack.
Then I came back to it this week and decided to write my story so that people can see its not necessarily going to be so bad.
Yes, I have a busy job, HS does affect my life, but I'm no longer mortified to talk about it. So that's a big step for me, borne out of the fact that I've now met other people with HS.

One other thing I wanted to add - one of my "excuses" for lack of exercise in the past was the fear that the excessive sweating and tighter sports clothes will contribute to HS flareups. From my experience, that has not been the case.

Have a good day everyone, thanks again lockman.

Does anybody else get frustrated at how many medical professionals are completely oblivious to the existence of HS?

Its great to hear about peoples experiences with HS in Ireland, most of the info I find is from the US or UK. I had the worst time of all with the HS in the UK. I came back to Ireland as I was in so much pain I just couldn't cope. I waited ages to see a vascular surgeon there, when I saw him he told me that he'd seen so many 'interesting skin cancers' that morning that he might consider doing the graft a year from then. By the time I got to see my surgeon in Galway my armpit was liquid, my was dressing me and I was in so much pain that I was sleeping sitting up on the sofa as I couldn't lie on the bed. No matter what problems we have with the health service in Ireland I can't fault University Hospital Galway. I'll never forget the look on the surgeons face in Galway the first time he saw it. He asked me who the surgeon in England was, he told me that he knew him and that when he saw him at the next conference he'd be having a chat with him. He couldn't believe I'd been left the way that I had.

One thing about this disease is that if you can cope with it you can cope with anything. After all it can be a daily battle against your own body, so you have to keep a sense of humour. My experience with stage 3 is that most of the nerves in the really bad areas have little or no sensation after years of sinus tracts so at least the tearing sensation is gone. We all persevere, maybe the anti-TNF's are a solution for long term control:)

Hi guys, My name is Rylan and I am 22 years old, I am from Australia and i believe my mother, myself and older brother suffer from HS. Ive had the condition since i was about 9 and have not yet been diognosed. From what ive read i definitely believe i suffer the same problem. I have the cysts come up in so many different parts of my body, groin area,inbetween the ginital and arse area, behind knee caps, tail bone, on my arse, armpits, back, sides and back of my neck are greatly effected. on my elbow, also on the fold of the arm between the forearm and bicep. ive even had them come up on my cheek area aswell as just under my jaw. Had one on my head at one stage and left a bald patch which luckily has grown back. I really thought my family were the only ones, noone without the condition will ever understand how painful and depressing it is, it effects everything mind and body. Ive had one cut out of my arm that still comes up and down so obviously the whick they were using to draw it out once cut didnt work, other than that ive had no opperations only antibiodics which seem to only work when the infection is bad, just recently i have had one on my elbow come up and it literally made my whole forearm swell and bruise. the anti biodics have taken the swelleing and redness down but the cyst still remains. There seems to be no escaping this, although i havent tried things you guys have, everything i read doesnt seem to work for anyone too well. just today i bought some potassium permanganate from my chemist so im going to try bathe some smaller effected areas in that so heres hoping. but there is no fixing the scars unfortunately. I would love to hear from you guys , its such a relief to know there are others out there who understand. Feel free to email me any one
rhi_richardson@hotmail.com