Does anybody suffer from Hidradenitis Suppurativa ... - MY SKIN

MY SKIN

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Does anybody suffer from Hidradenitis Suppurativa on here?

TR7O profile image
TR7O
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TR7O profile image
TR7O
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sidekick profile image
sidekick

Yes, I do. I've been suffering with it for about 8 years, but was only properly diagnosed around 4 years ago, after an increase in severity when I stopped taking the contraceptive pill. Been going round in circles with various medications and referrals ever since. I assume you're a fellow sufferer?

TR7O profile image
TR7O in reply to sidekick

Hi Sidekick,yes Iam, I only got diagnosed about 2 years ago, after suffering with this awful disease for many years. I've been to many doctors over the years, but none of them diagnosed it. Been going round in circles myself, dermatologist is useless, all they want to give you is Roaccutane,which is a very nasty dangerous drug,and if you refuse it, they wash their hands of you. What stage are you, and what meds are you on? I'm end stage 2, its wide spread. How do you cope?

Hi all,

Just a quick reminder that if you'd like to, the British Skin Foundation is always looking for case studies to help with their media work. It's an excellent way of spreading awareness about your condition, and really not that scary talking to the press (we do it all the time!).

If this is interesting, please have a read here bit.ly/dGqClP or contact bevis@britishskinfoundation.org.uk

Thank you!

Bevis

Hidradenitis1 profile image
Hidradenitis1

Hi TR70. Yes, I do. Fellow sufferers also say keep off the Roaccutane. There are many support groups on Facebook (of which I am a member of most) so please join us for good advice and like-minded people. We are all there to help each other through this dreadful disease.

spot profile image
spot

yes. My owrst bout was on my breast now - and I was diagnosed firstly with 1% curable inflammatory breast cancer!!! but it's not it's what you'vw got - so phew that's what I say

at least I can live noW! - sppot

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