Laura's Story

[Received Nov 2008]

Hi, My name is Laura and I am 22 years old and I was very happy to find out about this website.

I am a woman without a question, having all external female genitals, only I have had 8 operations and a colostomy (after 3rd operation) but still no vagina or womb.

My childhood was fully normal, only my periods didn't start as my friends ones did. But it wasn't problem for me, in contrary I could live a easy life. I was 16 when I first tried to have sex with my boyfriend but it didn't work out. At the beginning I thought it was normal for the first time but after more failures I decided to go to GP. The doctor was very nice and I don't remember exactly what she said but she order me to go to another very well known GP. Then I started to have infinite tests and I was told about not having vagina and womb, but hopefully working ovaries.

After that in April 2003 I had my first surgery to make a vagina. From my case summary I can read I had several procedures: Kolpopoees, Laparaskopia, Suturatio Peritonei. I don't know what does it mean but as I have understood they tried to build a new vagina from my existing vaginal tissues making somehow more space there. But after the surgery on 9th day I had complications: fistula rectovaginalis [abnormal hole through wall of rectum to vagina].

After that they tried to close the fistula after couple of months from vagina, but it was unsuccessful and in December 2003 doctors decided to disconnect my bowel making me a colostomy, but also after this surgery fistula didn't heal either. And until last year I have had 7 operations altogether to close the fistula. But closing fistula meant also that my new-built vagina was destroyed. Nobody knows if fistula still exist as the last operation was more think-through and they took fatty tissue from my left outer labia [to plug the fistula]. And now I don't feel all the time gas and bowel liquid coming from rectum to vagina.

But doctors in my country said they are not going to operate me any more as they confessed (at least! [last?]) they don't have enough knowledge. I was quite depressed after hearing that and I didn't know what to do next. A doctor and a friend of mine had good contacts with doctors from another country and he took me there. They agreed to operate me there. First question was of course if fistula was healed, because this was still unsure. Then they suggested the opportunity how to build me new vagina, which was taking skin from my bottom and also some muscle from my thigh.

Now I have pulled myself together and tried to face the truth (all these years I have somehow lived like in a different world, going to operations but never really thought about it) that I can't run away from the problems, especially the older I get. And I found out there are more people like me! At first I got actually even more depressed as I started to think what if I had known this before, I wouldn't have gone through 8 operations. I found out that for my condition there would have been the easiest solution of dilatation, but nobody ever told me about that. Also now I started to think if dilatation would be possibillity for me? But maybe my tissues aren't that flexible after so many operations anymore.

I also started to think if should consult somebody else too. But where should I appeal to? My next operation is already scheduled in January 2009. In my country it seems I am quite on my own. ;(

We sent a brief summary to two gynaecology advisors who replied:

Advisor 1:
<<This is a sad story. I am afraid I don't think dilators would help. She is likely to have extensive scar tissue which doesn't dilate well. It is a shame they didn't try them first before surgery. I don't know anyone in _______. The only gynaecologist I know in ________ [other country she visited] is ___ _____. He is nice and very active in paediatric and adolescent gynae[cology]. I don't know whether he does this kind of complex reconstructive surgery.>>

Advisor 2:
<<Sounds as if they tried a laparoscopic Davydov with subsequent complications - all sounds a very difficult situation now - if very scarred then dilators less likely to work, although of course always would have been the least invasive and most preferable option [to try first]. Rotational buttock skin flaps will also require delicate and extensive dissection to work - but may do - I suggest you suggest to the young woman that she asks the surgeon in ________ [other country she visited] whether she/he feels if dilators may work - if not I'd go with the buttock skin suggestion.>>

---