Will it spread???? please help

Posted , 5 users are following.

i have recently had surgery on my groin where i have got HS on both sides and have so far only had one side removed. The scarring from the op is rather nasty although its still only in the early days and looks alot better than 5 massive purple boils.

I was warned by my mum not to read anthing on the internet as it would probably scare me to death. And it looks like she was right!

Although i knew that mine was prob in stage 2 and only in my groin which is embaressing enough, i could not belive what i have read about poor poor people who have developed this in some cases all over their bodies. Im horrified and mortified. My question is, i have had mine for about 5 years in the groin only? is it likely to spread ? could somebody who has it in more than one area advise me how long it took to spread to a 2nd area or is it just a waiting game?? please please help as im now scared witless :cry:

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15 Replies

  • Posted

    Hi Taylor

    I read into the disease on the internet and it scared me to death too, but i think its good to read as much as you can and absorb as much as you can, i really think its a good way to deal with this nasty disease. Ive been suffering for the past 17 years and after looking at some pics of the extent some people suffer with the disease, i actually think im quite lucky. I suffer under both arms but over the past 2 months ive had a lump in my groin so maybe it does spread, just deal with now. You're a brave person, we all are and only sufferers will know what pain and discomfort we experience. If you fancy a further chat, post me back.

    Rachael xx

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  • Posted

    Thanks Racheal,

    looks like the surgery hasnt worked already as the scar is now weeping with a lump growing in the middle. To be honest ive never really got myself down over it until now as i looked at the surgery as a last chance thing that would indefinatly cure it and now it looks like im stuck with it. do u think it would be worth using antiseptic creams under my arms to try and prevent it spreading there?

    Have u had surgery on your arm pits? did it dome back?

    ive got so many questions and i feel like there is no one to answer them. My GP just keeps referring me to the dermortoligist who just shrugges her shoulders at me and me and refers me to the surgeon who has now just refered me back to my GP. Is there any independant clinics who can deal with these cases that you are aware of?

    Any help would be greatly appreciated as its really starting to affect my life now.

    Taylor

    xxxx

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  • Posted

    i had radical surgery to left axilla last april, ie a yv flap and guess what i still have reacurrences at the top of my scar, so further surgery needed. I also have the disease in my rt axilla, i am a staff nurse, so know all about hygien not shaving not using deoderant etc, i have tried everything but to no avail. i dont think there is any cure as such but i have learnt to live with the pain and continuos dressings . i am 53 and had to give up my job so now incapacity benefit is my income, but hey i caan read do yoga and find time for people so life can be quite good at times. my hubby very supportive and even helps with the housework when its bad and in turn when i feel good i treat him to something nice, hopefully when ive finished with surgery etc i can get back to work and contribute once again to society. keep your chin up at least we havent lost limbs or paralysed.bj
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  • Posted

    been to see the nurse today (for the 6th time this month) feel like the GP has fobbed me off to the nurse because shes sick of the sight of me. And guess what......more antibiotics and a 'make ANOTHER appointment for next week.

    Work are starting to get really annoyed with the amount of time off i am having with doctors appointments and ive just been referred back to the surgeon to get the other side removed (for what its worth).

    The scar from the surgery i had in December has just turned into one big lump now and im stuck in bed waiting for the antibiotics to kick in because it is so painful.

    I would re mortgage my house to pay for a proper specialist in this area?

    I have been advised now that i should think about taking them tablets that are supposed to work but you cant have children for upto 5 years on them. Cant remember what they are called but i have tried to avoid that route as im only 28. Has anyone had them ? do they work?

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  • Posted

    Hi Taylor

    Just read your message and my heart goes out to you sounds like you are having a terrible time. My experience is posted on here so give it a read and get back to me if you wish. the only tablets i have taken apart from antibiotics are Roaccutane so not sure if they are what you are talking about but i had to sign a consent form that whilst taking them i would not get pregnant but was no mention of not getting pregnant for five years so these may not be right ones. In my experience gp's will always fob you off because they only see radical and painful surgery as the answer and they don't know what else to do for you if that fails. Nobody can possibly understnd how much this disease can ruin your life. I know your pain cos i feel it myself you are not alone and i know how low you feel.

    Take care and take painkillers they will take the edge off a bit and am here to chat if you are up to it.

    Gem xxx

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  • Posted

    They prob are the same tablets Gem, Did u take them ? did they do any good?

    Think im having a 'good week' this week, they seem to have calmed down(touch wood). Been using tee Tree oil dont know if this is just co incidence that they have gone down or wether the tee tree oil is actually working.

    2 weeks to the next op......getting nervous.

    x

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  • Posted

    Hi Taylor

    If we are talking about same tabs they didn't do anything for me so i was then referred for surgery which was on my left armpit. It was a sucess because it didn't return but i found the op a nasty experience and need to have it done on my right arm now but have cancelled it twice already as i have real issues in my mind and don't seem to be able to make myself face the inevitable. Do you have any suggestions as to how you get around facing it because although you are obviously feeling apprehensive you seem to welcome the medical intervention whereas i shy away from it. The stupid thing is i am in so much discomfort all the time now that i should welcome it. Any ideas will be gratefully received.

    Also i have never used tea tree oil so can you just use it on lumps because mine is open and draining all the time so i guess it would sting like hell. I use fucidin cream on mine doesnt seem to do much.

    I am really pleased that you are feeling a bit better this week anytime you need a chat i am always here!

    Take care Gem x

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  • Posted

    Ive been the GP again today to ask about the tree oil as one of my lumps is open too and didnt want to make it worse with the oil. She said to use unconcentrated oil on the 'unopen' lumps and use it with water on the open ones just at the edges. It seems to keep the infections at bay as i seem to get mine infected all the time. However, the oil dosnt stop the bleeding. Mine just bleed constantly. but it does ease the soreness.

    I can understand why u are so apprehensive about the surgery and my first op hasnt really worked as well as hoped but it has downgraded it back down to stage 1. which is great as the pain is managable.

    I suppose the surgery is harder under your arms as (without sounded too crude) i can sit down with my legs acimbo as my is in my groin area,with a long skirt on and let some air get down there, where as i suppose you would have to keep your arms raised intially? is that right? But think of how diffrent your quality of life will be. The way i see it is i personally feel quiet dirty with mine in my groin and although the scar from the op is big it looks and feels alot better than the wounds and lumps. Im almost excited of the thought of going back in to get the other side done. I cant wait. The sooner you get it done the sooner the scars will fade and the sooner you can parade round in your sleeveless summer dresses again smile now bite the bullet and get it done!! smile

    Take care.....xx

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  • Posted

    Hey there thanx for your words of encouragement will try to get the courage to go for it and cheers too for info on tea tree oil will get some and let you know if it works for me, apparently it is good if they bleed a lot it means they are trying to clear the infection out but that might be rubbish prob because they are sore as hell. If you wish you can private message me and we can swop email addresses,

    Take care of you xx

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  • Posted

    mine are bleeding loads n loads n loads recently....but no infection. I dont know whats worse.

    Any joy with the tee tree oil?

    im currently trying 'dairy free' diet. Its killing me. I think im addicted to cheese as im craving it like mad! its been 1 week and no change, im giving it one more week then im having a cheese and milk fest.

    xx

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  • Posted

    Have you tried zinc?

    Hi Taylor and others,

    I (woman, 39) have recently discovered that my boils under the armpit during 2 years & one surgery (making it worse) is HS.

    I am quite scared too. But maybe I found a hope here: I have read that zinc tablets (6 times 15 mg per day) reduces symptoms significantly. A pilotstudy from 2007 has found it effective. Google hidradenitis zinc and it will come up.

    Take care!

    Mabu

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  • Posted

    Thanks mabu i will try it....... i will try anything!!!

    Have u tried it?

    xxx

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  • Posted

    Hi Guy;s...

    wow.. i'm not the only sufferer in the world then...

    i've been suffering for the last 3 years... (groin area).. and i go through stages were i decide i'm gonna ignore this pain in my life.... but, i suppose that is wishful thinking..

    how hard is it to explain that u siffer from HS.... emensely difficult...

    no-one seem's to understand.. and, infact i think i have given up explaining... as factly as it can be said.. i don't understand this HS.....

    it's such a miserable time in my life.. that like many other's i'm stuck with something that has no cure!!!!

    i have got to a stage that i cannot even wear underwear.... anything that stick's to it... bleed's.... the pain is un bareable... sleepless night's because it hurt's....

    i can not even look at my groin.. it disgust's me so much...

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  • Posted

    Hi there - please pelase have a go at going gluten free - I suffered for over 20 years - went gluten free and am almost clear now - the only time I have a brak out is when I eat whole grain bread or muelsi. Within 2 days of eating anything with whole grain, a new HS apepars - so I know I can't do it now - but white bread is fine. I gave more detail in an earlier entry - with a title including \"what have you got to loose? - and it really has worked - and cost nothing!

    Good luck - regards - Karen

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  • Posted

    Karen,

    I did try Glutton free and it did calm down a bit but but flares back up as usual. How long did u do glutton free before it started to work? i was only doing about 4 weeks.

    T

    x

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