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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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