Hidradenitis Suppurativa Since I was 6 help!!

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Hello,

I have suffered with HS in both sides of my groin from the age of 6 years old I am now 28.

When I have an attack I find it hard to walk and I have months of one after the other and then healing then developing again in same area.

I have been under dermatologists since I was 6 when I have a bad attack I'm often given antibiotics.

A few years ago it got really bad(like it is currently) I went on antibiotics for over a year, it improved slightly. I've tried everything to the point I wear underwear way too big for me and I also avoid hot baths.

When I've been pregnant with both of my children they've vanished and after 2 years of the birth my HS comes back worse then ever.

Right now I'm in so much pain there draining then filling back up again I can hardly walk. It completely effects my self esteem.

I wish there was someone I could be referred to in Hampshire so I could get the help I need.

Any help would be great, my dermatologist said I would be a good person to use to study as I've had this from such a young age.

Thank you

Jade

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7 Replies

  • Posted

    Hi, Jade! I'm sorry I can't offer you any help as I have no idea about that region, however, I wished to drop in and offer some support. I myself suffer from HS and know how painful it can get. I hope you receive the help that you need and things get better for you. 

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  • Posted

    Have you tried the paleo autoimmune protocol?

    I have had the same issue same place since 12 and I'm 34 now! I am currently going through my worse flare to date! It's truly unbearable.

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  • Posted

    Hey Jade,

    As a fellow sufferer, I feel your pain. I'm 44 and had it kick in at around 40 years of age. I'm a late bloomer I guess.

    I know treatments are hard and meds are expensive. I am currently on Humira and that really helps with the inflamation part. However, the side effects are a bit annoying and potentially dangerous. But, oh well.

    I finally broke down and contacted the Institute in Ohio however the wait was months in advance. Later I found my doctor in Miami. Dr. Barry Resnik. Great guy. Great doctor.

    I know this isn't in Hampshire but I'm in Texas and I made the pilgrimage to Miami just for the hope of a better life.

    There's no cure as we all know, yet. Every day is a fight, ut keep fighting. Keep reaching out. Hopefully we all find the help we need.

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  • Posted

    Do you have utis as well  as it could be a chicken & egg situation ie: what came first ? I say it is congenital cellulitus[ connected to lipo-lymphoedema ]  & must be controlled with antibiotics or homeopathic  or havent I read about lasers? For cases like this in groin area surely this makes sense don't you think ?

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  • Posted

    Hi jadeycakes88

    Sorry to hear what you currently going through I think each of us know your pain in some way or another I was diagnosed at 16 not long after being told I have pcos the first couple of years where bad for me I was given antibiotics for awhile but I found that after stopping them they came back with a vengeance I'm not sure on the hot baths but I find them helpful , I also find that covering them up with plasters ect made them alot worse.

    I also found the dermatologist wasn't really that helpful everything they told me to do was making it worse I got so frustrated that I ended up doing the opposite, (touch wood) so far it's worked for me .

    I stopped covering them up , I have hot baths , I have to use certain shower gels , deodorant, creams ect as using certain ones can kick it off badly also if I'm stressed they go crazy it's hard not get stressed when you have these lumps but trying to not stress out will help I find these forums the most helpful even though everyone may have it different alot of the advice on here work and it helps to know that these people understand the pain and the stress .

    Have you tried using different soaps ect ?

    Or certain things in your diet ?

    I'm not saying that everything I do will help you but it's worth a try.

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