48 and still suffering with HS

Posted , 4 users are following.

Hi to all my fellow sufferers. I have had HS since my mid teens. It first started off with a pilidonal sinus on the base of my spine and then I have had the boils under both my arms and my groin. I have had to have three of them removed by surgery. In fact I am at home at present just recovering from having the last one removed. I have explored all avenues including alternative medicine such as herbal, chinese etc etc all to no avail. I have tried long term antiobiotics, special creams, washes and spent vast sums of money trying everything. I have four lumps under my right armpit at present, the worst of which has just been removed as this has been causing me no end of trouble for a long time. The other three I have to leave as they are. My surgeon told me that they cannot keep cutting lumps out of my arm because it might then mean I might have to have skin grafts in the future which would restrict the general movement of my arm. Obviously I dont want that. I had my last lump removed under local anaesthetic which went ok. However, I then got an infection, the wound burst and I had to have some of the stitches removed because they were holding the infection in!! All in all, not a good experience! I dont think I want to have any more removed!The surgeon told me I would grow out of the condition. However, given that I have had it for so long and I am now 48, I'll be on my zimmer and still suffering!!

With sympathies to you all.

Carolyn

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  • Posted

    Hi Carolyn

    My heart goes out to you. I'm 44 and was \"lucky\" enough to contract this satanic disease only in my mid-thirties, unlike so many who have suffered since their teens. I cannot imagine what it must have been like being a vulnerable and growing teenager, with all the other crap we have to cope with at that age.

    I've also tried many many natural cures - some of which have improved it. The chinese one (101E lotion) even looked like it was going to cure it at one stage! It almost disappeared after a couple of months but then the HS seemed to just get immune and came back again.

    I have now given up smoking (since 1 month) after 27 years of smoking and I'm hoping that this will improve my HS. I'll keep everybody posted on that one.

    I am also going to try a really serious macrobiotic diet for 3 months. It's going to involve a complete change of lifestyle but I'm ready! I know this wouldn't suit everybody but at this stage in my life, I really feel the need to make some radical changes and diet and smoking are definitely the 2 biggest for me personally. Luckily, I have the most amazing partner, who has also given up with me and is going to go macrobiotic too!

    Very best wishes to all,

    love and blessings

    BeverleyF

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  • Posted

    Hi Beverley, thanks for your reply. I dont think I could be as brave as you and go macrobiotic though! Strangely enough for me, at times when my diet has been really bad, my HS has even appeared to be a bit better, but of course one cannot live on a diet of sweets, cakes and crisps!

    Generally I do try to eat healthily and exercise regularly but I think I just have to accept the fact that this is something which I'm always going to have so I will just have to get on with it. My surgeon said they operate only as a last resort and having now had three removed, I really dont think I want to go down that road anymore. I'm covered in scars under my arms and groin as it is and feel very self conscious about wearing sleeveless tops so generally hide under something with a sleeve. Similarly, because of the scarring in my groin, I cant remember the last time I wore a swimsuit! Luckily for me, my husband is very supportive and he doesn't bother about having beach holidays so that's fine. We like walking in the Lake District but sometimes the HS flares up at the most inopportune moments and a long walk sometimes can end up being quite painful!

    I've only just discovered site and now I realise that I am not alone. It's been very useful to get my experiences down in writing and to hear what other people have been going through.

    Take care and good luck with the macrobiotic diet!

    Carolyn

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  • Posted

    Dear Carolyn, I'm Jennifer, 26, from Birkenhead, Merseyside. I've suffered now with Hidradenitis for several years . I've only had it under my armpit though. I only had surgery last thursday morning, For the 2nd TIME, so as you'll know i'm in lots of pain! I'm just so upset, I can't believe whats happening! After the first surgery, I had it packed, however this time I just have a huge hole in my armpit that needs dressing everyday. The doctors want to send me to a hospital that deals directly with having my armpit removed and having plastic surgery. I'm so scared as when I had my dressings changed today, more lumps are there!! Best wishes, Jennifer. xxxxx sad
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  • Posted

    Dear Jennifer, sorry to hear you are in so much pain. The one I have recently had removed from my arm is taking ages to heal, in fact when I went to the nurse last Friday, she was surprised that it was still bleeding so much. For one reason or another, there aren't any appointments with a nurse at my surgery next week so she has given me some dressings to do it myself. No exactly an easy task as it is under my right arm and I am trying to do it left handed! I took the dressing off and removed the packing and it's still pouring with blood...surely that's not right? My husband had wanted me to leave the dressing on until he came home tomorrow night (he had been away on business for 3 nights) but the blood had completely seeped through the dressing and I felt there was no way I could leave it until he came home.

    I too have four lumps under my right arm in all but my surgeon wouldn't entertain removing all of them, just the one as he said it would mean having plastic surgery on my arm which would restrict my general movement. Is there one worse than the rest that could just be removed instead? It's bad enough having one removed let alone four in all...you poor thing. After the experience I am having with the lump that has been removed, I am so glad that they didn't remove the other three. I also have two or three lumps in my groin but there's no way anyone's going to operate on my down there!!! I'd be walking like John Wayne for a month!

    I hope you get on ok. Keep your chin up. Best wishes Carolyn x

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  • Posted

    Dear Carolyn, I'm so sorry for the late response. I've been really poorly this week. Thankyou for getting back in touch with me, it's nice to talk to somone who knows what i'm going through. I know what you mean about the doc's not making more appointments for you, mine has done the same. My Mum has been changing my dressings. Today the district nurse come out to check the wound, However she ripped the dressing off so hard, I nearly shot through the ceiling and was pouring with blood!! I've been in agony all day! My heart really goes out to you as I know what you're going through. Your Friend, Jennifer. xxxxx
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  • Posted

    [size=18:c32e84e970]I have had this hideous disease for a number of years (but only diagnosed 2 years ago) Try the Dianette pill, I have been on it and although the scarring is still there I have had NO flare ups for 2 years!

    I know this may not work for everyone but my dermatologist insisted I be given it even though I am 43 now.[/size:c32e84e970]

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  • Posted

    Dear Jennifer. Thanks for your reply. Sorry to hear you have been unwell.

    I was at the nurse this morning getting my wound checked. It seems to be coming on ok although it's very slow progress. I still have to dress the wound myself (or at least my husband has to do it for me) and then go back to see the nurse once a week for her to keep an eye on. Luckily she's given me a load of dressings otherwise it would cost me a fortune if I had to buy them all from Boots.

    The wound is still bleeding a lot but the nurse didn't seem unduly concerned about it. She says it's better for it to heal slowly as otherwise it might heal over the top leaving the hole underneath. It's been 3 weeks today since I had it done and I think it will take at least another 3 or 4 weeks before it heals.

    More are flaring up in my groin but I'll just have to put up with them because I really dont want to keep having to go through this.

    Take care of yourself.

    Best wishes Carolyn xx

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  • Posted

    Thanks for the message from \"Cheshire\". I too have tried the Dianette pill although it was a few years ago. It did absolutely nothing for me however. I think I have exhausted every kind of treatment, pill, lotion etc etc!!

    Many thanks.

    Carolyn x

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  • Posted

    I've been suffering with this awful disease since my early 30s, although luckily for me only in the groin.

    I had a number of operations but it just seems to get worse and spread further afield after each one. The last surgeon I saw wouldn't contemplate touching it again as he said I would be crippled.

    I've tried all sorts of anitibiotics, some of which helped at the time. Tried Dianette but it didn't do much for me, although I think in my case it is affected by hormones as I never suffered when I was on the pill, or when I was pregnant. Having said that, the menopause hasn't stopped it.

    I think stress is a trigger as well. I'm 55 now and the last outbreak I had when my husband died suddenly 7 years ago has never healed completely - sometimes the wound where the doctor lanced it heals over for up to a week but then it all builds up again and bursts. I've just had a bad episode over this weekend.

    It's good to find this website and know I am not alone.

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  • Posted

    Hi All

    I'm now 47 and have only just had HS diagnosed when I was admitted as an emergency 3 weeks ago to have multiple boils with underlying abscess excised from my right armpit... I was left with a 6 inch long 2 inch wide gash with a separate hole 2cm across and deep just below it. It's now healing well thanks to my practice nurses who have been fantastic, using mainly sorbsan to pack it and they've just started using silver dressings on part of it.

    The weird thing is I used to get regular infections usually in the armpit between the ages of 18 - 25 and didn't have any more until last autumn.... a few months after my 20 year old daughter started getting them on a regular basis. I found the term Hidradenitis on the internet (whilst researching personal care for a lesson - I teach Health Studies) and both our GPs said no it wasn't HS.

    This episode started with one boil then 2 then all of a sudden it was 12 with a huge abscess underneath… my GP sent me to the local hospital where both the casualty officer and the surgeon both immediately said it was HS.

    I don’t smoke, I’m not diabetic…. But the fact that I’m early stages of menopause and my daughter (who also has period problems) has it leaves me wondering if there is a strong hormonal link in our case?

    Has anyone else come across this pattern?

    It is good to know I’m not the only one… it may be healing but the itching is driving me insane right now!

    All the best to those in the same boat!

    Aunty Ruth

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  • Posted

    hi, my name is joanne, i have just been diagnosed with HS after 20 years of mild symptoms and have been asking if my mam had anything like this but she didnt. ( she died last october so i have to ask my dad). she did suffer from acne which seems to be linked. i feel that we sufferers are alone in this fight against this disease, i havnt been told anything about this. i was told it was HS and thats all the medical support i have been given. i believe the cure lies within our diet and groups like this will help us evaluate all the information and let us cure ourselves cos lets face it, the doctors seem to know zero about this. i find it scary at times cos i dont know if i have a mild case of HS, or if its the start of stage 2. i have one lump which has a tract formed in my groin/thigh area and it got realy inflamed and then shrunk. for now. i was due to get op but after it shrunk i decided to leave it for now. wondering if this was right decision and maybe should have this thing removed while its shrunk. i was under impression that it would be a simple op, i was not told of the severity of the op and recovery time. i am going to start my own treatment using natural substances etc. hopefully we will find what works best for us. good luck.
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  • Posted

    Dont be afraid of surgery in your armpits I have full movement in both my arms and apart from some numbness which is normal I lead a full life with no problems. GOOD LUCK
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