LS Vanished At Puberty. Worried About Birth. Please Help Me!

I am a 20 yr old female, currently expecting my first child

From birth I suffered with LS right up until puberty. It took sooooooo many trips to see different doctors and consultants before I was diagnosed. As a child at home or school I frequently wet myself due to my fear of the pain whilst passing urine. I was also always constipated because the skin condition was present around my anus. My mother battled so hard to find a solution for me.As a child, and even now I find it difficult to look at my vagina. I remember that the LS came in waves--present for a few months only to dissappear again for about a month and then return. My skin would hang in strands as it peeled away from my vagina, bleeding and causing the most incredible pain. My mother first noticed when changing me as a baby. She says that it looked like 'rats had chewed' my vagina ( a pleasant image!!). Eventually (at about 7) I received treatment at Great Ormond Street hospital, purely because my uncle is a consultant paediatrician and managed to get me a refferal. I was diagnosed and given cream to numb the area so I could go to the toilet naturally. As I said, at puberty is disappeared. And since then I have had no soreness, no pain or skin peeling at all, apart from sex. Infact I heard nothing from any doctor. What I find astounding is that a year ago I went for a routine STD test. I was told by the gynaechologist that my vagina was disfigured. I never new that my vagina was now different due to LS. I was never told, and how would I know? Having nothing to compare it with. She said I was lucky because my vagina was 'tidier' than others. But i dont feel so fortunate. I will rather gross sometimes. My clitoris is 'buried' by scar tissue and I have no labia minoras ( inner lips). Learning this upset me greatly as I reawakened the condition I had tried so hard to forget. I realised my knowledge of my vagina was very poor. When I became sexually active I always found it uncomfortable. I tear very easily. Once so bad I nearly passed out with blood loss and shock.I lost enough blood for my lips to turn blue. My then boyfriend carried me to the bath. I clearly remember the bath water turning red. Of course I didnt go to the hospital, i begged my boyfriend not to call as I was so ashamed. I felt that I was not a proper woman. Penetration is difficult. I find it hard to relax as I am expecting pain and ripping. I believe my vaginal opening is smaller than it should be. My clitoris is still functional and I can still achieve sexual pleasure however my Clitoris sometimes rips as well. I have spoken to several doctors regarding my problems. They have just recommened lubricant which does not always prevent tearing and trauma. One doctor has said that LS is not an auto-immmune disease whereas another has said it is. My family doctor has said that LS will return in menopause. I dont know if this is true???? From the limited imformation I have of my own LS i know that mine was quite an extreme case for a child. And apparently its unusual to have it as a girl and for it to then go away at puberty. I have never spoken to a fellow sufferer and would very much appreciate answers to my questions.

What I am most worried about is child-birth. I am seeing a consultant regarding my concerns, I am frightened of tearing very badly, and whether my vagina will heal as it should. I know that scar tissue heals differently and that my vaginal skin is severely weakened.

What I'd like to know is if anyone else has had LS in childhood which has then vanished in puberty? How will my skin cope with birth?

Thankyou for reading this, Im sorry its so long.

Charlie 3 months pregnant.

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