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Hi to all you sufferers out there. I had this hideous condition from the age of 25 and know exactly what your all going through. In my case it was not diagnosed until some 6 years later. I was sent to see a dermatologist who prescribed some powerful steriods on a 3 month trial. These did not work so he refered me to a surgeon who cut away all of the infected area's, mainly scrotum and buttocks.

Once the wounds had healed i got on with life, 5 years went past and i had forgotten all about it until one morning i woke up with that familiar pain. It came back with a vengance, it got to the stage where i was even incising the lumps myself just so i could walk.

Some time later i met a surgeon who said his father might be able to help me, i went to see him at London Bridge Hospital where he outlined the treatment. This involved the same procedure as 5 years earlier only this time they would skin graft the whole of the infected area's, it was a lengthy and painful process, the pain from where they took the skin from my thighs was excruciating and i needed crutches for 10 days.

So, the outcome, i have been clear now for 20 years, touch wood i hope it is now a thing of the past. Until they find a cure i feel this is the only option left for the majority of sufferers. 

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  • Posted

    Hi I am glad this worked for you.  Yes it is drastic but when you get to that stage there are few options left.   Many of us aren't that bad and have to suffer through various treatments to see if they help first.   I fortunately am not that severe so wouldn't be offered that treatment but I still have to suffer it.   Well done and it sounds like it was worth it for you.   x
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  • Posted

    Hi James glad this worked for you!

    I am also planning on having surgery this year to put an end to this, I found a really good surgeon who has treated many patients in the past with this disease but he abides in the USA and it's a little far for me to travel.

    If you could private message me the name of the doctor who treated you at London that would be great since I am from the Uk as well. I don't want to get this disease treated by someone who doesn't have any experience in this field. Appreicate it


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