LS just confirmed after biopsy

I am one day into discovering I have LS. Out of nowhere last December I felt what I thought was a small lump in my vulva, then two ulcerated and inflamed areas appeared and I would literally scream when I had to pee, it felt like someone was setting fire to me. Nurses and doctor at my surgery had never seen the like, so I was referred to a lady gynae at my local hospital - only problem was the wait for an appointment (2 months), then being told I needed to have multiple biopsies under a GA (another 2 month wait) - all the while nothing to help the burning or the pain as until the results came through no-one knew what they were treating. Following the biopsies I have had a 5 week wait for the results, during which time I have often had to go back to the ward in agony, all they could do was give me anaesthetising gel to ladle on. I have shed buckets of tears, in pain and frustration - and to top it all I developed severe thrush on top of the problem areas. I cannot describe the pain - I did all the things I was told, loose pants or no pants, aqueous cream, no soap etc. Sitting - agony, nighttime- agony. wearing clothes- agony. At last the results were phoned to me by my consultant yesterday(14th) and Trimovate prescribed. Apart from never having heard of LS I wasn't given any information about the condition - I have got that on-line, nor was the problem of the accompanying pain addressed (lower abdomen, groin). Tonight I start the Trimovate - my GP told me they don't tend to prescribe Dermovate for the condition (though I notice many of you have had it). I wonder has anyone else been on Trimovate? I am 59, post menopausal, singel and been celibate for 26 years - so the condition can't be aggravated by sex obviously. However I have had 3 spinal operations, suffer with Ankylosing Spondylitis and IBS - and there are thoughts that LS is linked to these as an autoimmune disease. Does anyone else know any more? As LS is a pre-cancerous condition I contacted Macmillan Support, but it appears there are no support groups for people with this particular condition, only this site. Does anyone know of any groups? I live in East Sussex and I don't know about others but living alone I really could do with contact with fellow sufferers. This condition seems so hard to live with and understand, and not one easily explained to 'just anyone'. I have read many of the postings and have bought Replens to try, but the Paladin cream mentioned is not listed in the Pharmacists book so am a bit at a loss with that one. Hoping to 'meet' for mutual support. :?

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