living in hell

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I have suffered with this from I was 18 i'm now 41 and it's getting no better! I've lost count how many times that they have been excised in both my arm pits, it's pretty bad in my groin too. Doctors are talking about removing part of my Labia! which I don't want,I also get them on my neck which is soooooooo embarassing as people stare and have asked me \"have i got chicken pox\" this is a very painful desease, and all the antibiotics in the world are not going to cure it. But I will struggle on as i'm not going to let it beat me. Doctors have told me thats it's linked with fibromyalgia which I also have. I also have arthritis and it's made worse due to this desease, as I don't know if it's that what is making my joints sore or the arthritis.Lucky for me i've a very caring and understanding doctor who is doing the best he can. So you all hang in there things can't get any worse.

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  • Posted


    I suffered for years, eventually i was diagnosed in 1988 and was treated with roaccutane (isotretinoin) in huge doses, the side effects were awful while I was on the medication but I have to say that since then flareups have been few & far between. I had a large excison on the sternum and both armpits.... my last mild episode was about 3 years ago. Hang on in there....

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    I have had HS since the early 90's which started small like a pea size and over the years have got bigger and I now seriously believe it has to do with a milk allergy however my specialist will not even entertain the idea. When I have had a flare up it imobilizes me that I can't hardly walk, sit down or move my arms it's that painfull. I have just recently had one under my left arm that measured 2\" by 2\" now they seem to all be playing up. I recently came to terms with it then early this year was told I have Cervical Spondylosis and I just feel I'm going down hill fast, my Doc's signed me off and has advised me to leave my job because I do alot of heavy lifting meanwhile work keep being funny with me but I've come to the conclusion that I'm more important than my work. I'm not sleeping very well, I struggle to swollow some days I don't know why,I'm in pain everyday I feel let down, plus who is going to employ me now. I've had bad depression when I was younger and I feel like it's creeping back and I don't want to go down that road again. So sorry for whinning on but I just need someone to talk to who could possibly understand and I feel so alone. I used to be such a happy sporty person now just a misery and feel old. I feel writting this all down helps. Please take very good care of yourself.
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  • Posted

    Scuby, depression is a common side effect of this ailment (in fact any chronic condition) I think because of the physical appearance issues it is some how worsened, it effects your self esteem. It is important that you dont struggle on with out help for the depression especially if you are prone to it go and talk to your GP.

    I myself have had a particularly bad week with the HS a massive flare up in my pits has meant I am struggling to do anything for myself and as a formerly strong, independent confident woman it really has gotten to me this week. Sometimes it seems every silver lining has a cloud! However we must all struggle on. Chin up Ladies!

    Lolo xxx

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    Well now, the experience I have just read is very similar to my own.....I had my first operation for pilonidal sinus when I was 18, it re occured in the same place a few months later due to the drain and healing process failing. My second op was more successful though. However since then I have had infections all over my body, groin is particularly bad with excessive scarring. I have recently had a bout under my armpit which has become so bad I have been given an appointment at the local hospital and been told I will probably have to have surgery. My neck can flare up at any time and is so embarrassing as it takes so long to go. I used to use a lot of make up to cover it up but it rarely made me feel any better in public.

    My lowest point was when through ignorance my ex in laws used to think it was my diet that was causing it and would stop me from eating 'the wrong things' when eating meals with them! their family would join in and openly discuss the way I looked and dressed without any proper support. I was left reeling and feeling alienated. My ex husaband was embarrassed to be with me. My confidence took a battering and I ended up with depression.

    I have basically given up on course after course of antibiotics which lessen the flare ups while you are taking them, but then it seems to make the condition worse as soon as you stop! Though the down side to that being that the longer you leave it, the bigger and more painful they get.

    I am 40 now and having a particularly bad session currently, though I have the support of a very good doctor. To top it all I have now got suspected chickenpox!!!

    I have resigned myself to the fact the condition will re occur constantly and have learnt to live with it. I take comfort from my 3 children who see past it and my second husband who has kept my self worth and confidence intact.

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