pain, splitting and bleeding

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I had had itching since my teens but only went to see a gynaecologist when I was referred by A&E. I split during sex and bled so much I thought I needed stitches. Having sat through a nightmare of humiliating questions about my sex life they sorted me out and sent me back to my GP. She referred me onto other gynaecologists who seemed to take no interest at all. It was only when I went private that a biopsy was taken and I was told I had a neoplasia. At this time, in my notes, my consultant wrote that histology showed LS but he didn't tell me for another year!

I had a fairly large excision of the perineum and was then left to get on with it. I have been having 6 monthly check ups and 3 months ago I started on clobetasone butyrate 0.05% cream which i have found soothes the itch.

What I find most distressing is the pain on intercourse, made all the more worse by the fear and anticipation of pain and splitting and bleeding. This broke my relationship and I have found it difficult to start a new relationship - I have to decide whether to either tell someone about my \"problem\" or not and hope it goes ok.

I find it very difficult to talk to people about the condition. My friends know that I have a gynae problem - it's a bit difficult to hide it when you're unable to sit down or walk properly because of stitches but I've only confided in a close handful what the extent of the problem is. I feel embarrassed telling people in case they assume I'm dirty/infectious.

Does anyone else have experiences like this? Does anyone else have problems telling people about their problem?

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  • Posted

    Hi I feel for you. Yes I agree it is very difficult to mention this to anyone.

    I hope you find a good partner who will understand, given time... also suggest you let them read some of the information on these sites. Should help. I have just told my son, as I have now found out it may be generic... he took it well.

    Best wishes Pete.

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  • Posted

    I am 27 years old and was diagnosed 4 years ago, and really in that time I have never managed to manage it well, although I am positive i van get it under control. I have never had the experience of bleeding the way that you have and i really sympathise, I do find it difficult to sit down, walk, get in a car....show anyone. However I was lucky enough to meet a wonderful man who does not see me as infectious or yucky or anything. He is very patient and understanding and accepts that it is a part of me. I think that the problem is how we feel about ourselves, because of stigma, embarassment and general discomfort.

    I think the answer is for us to be strong, wait for someone who is understanding ( and they will come) and just keep it to ourselves until we truly trust anyone enough to tell. I was never shocked with the diagnosis but more shocked to find out the impact it has.

    Lastly, Not to criticise GPs who I admire. I do not feel it is their speciality and you need to see a specialist which is what I am going to do.

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  • Posted

    i have this problem since i was about 3 years old! i was sent 2 a hospital 2 ppl u actually knew what it was! i stoped goin in my early teens tho because i didnt want 2 be examined! but as i got older an started 2 ave a sex life,i had no choice not 2 go back 2 see if they cud help! i spilt really bad both ways! it is really painful! i dread sex an will put it off 4 as long as a can! it takes me about a wk 2 heal! an it hurts me 2 walk an sit down after sex,an dread goin 4 a wee after 2!i can only do it once because if i try an do it again the pain is soo bab and i just cnt do it! i have 2 wait a few days. even if my partner just touches me i split! i fink the cream they give me made it worse! it thinned my skin really badly but my doctor tells me if i hadnt of used it it may of bin worse! i also suffer terrible wiv goin the toilet i ave 2 take laxatives every nite! if i ever forget 2 take it i get consterpated an i tare vry badly and it can takes weeks 2 heal and the pain is unbelivable! an my skin has gone white quite bad! i did split up wiv 1 partner 4 this this main reason but there were other issues as well! fink it pushed us apart! but my partner now is ok wiv it well he says he is anyway! i tell him that my skin is just really fragile down there! but i always fink he cud do beta than me an he cud be wiv a girl thats normal an ave a really healthy sex life! i feel like a let down! and am scared he wud go eles where 4 it! i think it puts an awful strain on relationships! but i keep telling my self i cud ave something i lot worse! it has ruinded my sex life! i just dread doin it! cuz i now whats cumin after! which has ruinded it be4 it has even began!
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  • Posted

    aww thats sounds just like me, i had LS since i was 14 when i noticed i kept splitting but didnt tell anyone, i was diagnosed at 18 and only told a handful of friends, my ex boyfriend sent pictures of me and stuff and tellin people about me, if i didnt feel bad eough already, this made my life hell, i dread having sex and can only do it about once a month and i put it off too. when the skin splits its the most painful experience and i am thinkin of not havin children, it was awful beintold at 18 that if i did have kids i would prob have to have a caserian section! my new partner understands completly and i tell him all the time that he doesnt have to stay with me. i also have IBS wich just makes everything worse. i havent even told my mum cos i am that scared.
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