Sam's Story

[Received March 2010]

I was thinking I should tell my story, I saw a brief paragraph on the AISSG website [Vaginal Hypoplasia page] which mentioned a girl who travelled to Brazil for surgery but nothing more. Well that girl is me, and there is so much more to tell.

I have to start first of all with my adventures in search of the best procedure for vaginoplasty.

I was under the doctors' care at UCLH (Elizabeth Garrett Anderson Hospital) since I was about 14 or 15 years old, as this was deemed the specialist centre in the UK for people such as myself who have AIS. My exact condition is PAIS by the way.

I had operations when I was a baby which I understand are now not done until the child can actually talk, at least, and make a desicion for themselves, but back in the 80's my parents had the idea put to them that the best way forward was that I should have a gonadectomy at 18 months old, and for some reason a vaginoplasty (on a one and a half year old!) Don't ask me why – could the doctors have been on some sort of mind altering narcotics at the time? God knows.

Anyway, after that I had a small scarred dimple as a vagina, which incorporated my urethra although this was not spotted by Physicians until the last second. I will get to that later.

As an adult, firstly I was offered dilators to try and create a vagina, which is probably the best plan of action for CAIS patients with no scarring and the lower third of the vagina to work with, while I on the other hand had this small dimple which had my urethra in the middle and covered with scars. So dilation for me, as you can imagine, did not work!

By this point, at 18 years of age I had started my quest looking for procedures on the internet for having a Vaginoplasty carried out. I found a Doctor in Lyon, France, who is now retired called Prof D'Argent. I went to see him and he said he could carry out the Davydov proceedure on me and the NHS agreed to pay for it as it was not available in the UK. It was all set up and I went out to Lyon in July 2002 with my Dad, to have the operation. When a nurse came to me and said "we need some blood", I freaked, I cried and I ran out of the room to somewhere in the hospital car park sobbing like mad. I obviously was not ready for all of this, I just couldn't cope. My Dad and the doctors completely understood and I cancelled the whole thing, me and Dad drove down to the south of France for a few days to try and get over what was a bit of a trauma without anything even happening yet!

It was 2 years before I decided to do anything again, I was 20, all my friends by this point had boyfriends, were having sex and basically having a great time, and all I heard was the stories, and the dramas of their relationships. I almost became an agony aunt of sort to people, because I wasn't in a relationship myself, I observed everyone else's and could see how they all work from an outside perspective, but all I wanted was for someone to love and be with too. I had many friends but no one to know intimately, and felt very alone.

By this point doctors in London explained that the Davydov procedure was now available in the UK and I could have it done. So in December 2004 I told my friends I was going on holiday with my Mum for a few weeks and that was that, off I went to London.

I remember being given laxatives to prep me for the operation but I won't go into that. All you need to know is that it was horrendous! They also attempted to insert a tube into my urethra which they thought was further up than where it actually was, so it really hurt, my dimple is where it was, sort of all in one place, but they didn't realise this.

I was wheeled down to the operating theatre crying and nervous so they dosed me up with some brilliant tranquillizers, put me to sleep and 4 hours later I woke up........and Oh my God the pain, I was completely high as a kite on all sorts of chemicals which had no effect on pain. It was a hard pain in between my legs inside, which was down to the solid bit of plastic they put inside you once they have created the newly created vagina. I also had severe pain all over my abdomen where they had been routing around with the laparoscope. You will have to read about the procedure to know what they do but it's very invasive to say the least.

In that time nurses came and went, some of which did not have a clue what was going on. I remember once I was on the ward I had a machine which I could push a button and get morphine on tap (great in theory) but whoever set it up, and the 2 or three nurses I called over when I said it wasn't working, failed to notice the machine wasn't even plugged in! I remember panicking and I thought my guts had liquefied...... they didn't of course, but the drugs coursing through me made me think it was happening. It was so scary I thought I was going to die. My poor Mum was screaming up the ward for attention!

11 days later I got to go home, I just have to say those 11 days were savage, I got a very bad infection but it was controlled thankfully.

Anyway, once home I had a look and thought my God, why have they put it there! Due to my anatomy downstairs they put the vagina where my perineum [area between labia/vulva and anus] once was, and in my opinion too far back and behind my vulva lips. It literally looked like I had sat on a metal fence spike and it was an injury! Now before I go on about this any more, for those with CAIS this Davydov proceedure may work if dilation has not, but for PAIS just don't even do it. It took 4 to 5 months to heal, and by heal I mean scar...a lot! So I had a vagina in the eyes of the doctors, with no vulva round it, where my perineum was, and they said you look normal! And [that] it was successful.... F**K off!! I was told that due to the position of the urethra they couldn't put it where planned so just went ahead and put it somewhere where it shouldn't have gone! At least they could have woken me back up and tell me what the story was instead of just doing it!

The length was about 8cm but very hard to up keep, I had to dilate for 40mins, 3 times a day, so that's what my life was for a while....dilating?!?! It eventually shrank down to a couple of centimetres and I gave up. Anyway, I was offered plastic surgery after the operation at first, which should have been done before!!! There was a ring of scar around the exterior and I thought who is going to want to have sex with this! It's disgusting! All that for nothing but pain and torment! In the middle of me going through this my Dad got diagnosed with terminal cancer, which was the icing on the cake......I went off the rails then for a good year or so, did loads of drugs and drank a lot, just wanted to escape, was complete 'damaged goods'.

After a year I decided to go travelling and went to Australia for a few months to try and put my brain back together a bit and saw some amazing things. All through this period my Dad was fighting his cancer and it did look good for him for a while. I came back ready to fight for another procedure that would hopefully work.

I refused to rely on the NHS for help. They had failed me so badly and I felt like I had been misled into what I was getting. I spent 4 or 5 months searching Google, reading medical papers and hunting worldwide for treatment. I then discovered a medical paper on the internet that was written by Dr Mauri Piazza in Curitiba Brazil. His details are on this website. The link to the medical paper I found is here.

So this paper basically was talking about a modified McIndoe procedure but instead of using skin from the patient's own body, it used amniotic membrane donated from a woman who has just given birth. Now this does sound weird I know but, the amniotic sac is the membrane that surrounds a growing baby and is full of stem cells, it is universal, as in it would not be rejected by the patient as a foreign invader due to its universal properties. It can be used to line the vagina and would create a normal epithelium [layer of cells forming a lining] just like the skin on the inside of the vagina. It basically creates the whole thing with minimal scarring as it just makes the skin required as the body has the stem cells there to work with and create the lining.

Now this procedure is not available in the UK as it uses 'Live Donor' so they claim the risk for HIV is too great. Even though livers and hearts get transplanted everyday, amniotic sac is considered way too dangerous?! They [in Brazil] test all donors beforehand, the donated material is cleaned and placed on to a scaffold mould of sorts which is then inserted on a condom sewn inside of you and left there for a week, to become part of you basically!

The operation and the after effects with regard to pain was a lot less then the Davydov, but there was some. But the main thing is that Dr Piazza was such a nice person, he is a very genuine and gentle natured person who just wants to help. Before my operation I had a labiaplasty performed by Dr Piazza and his plasic surgeon assistant Dr Renato, first to make the exterior better and then 2 weeks later the actual vaginoplasty. My only issue was that my diet was chicken and rice for the 7 days the mould was inside me and I was not allowed to get out of bed! Not once! Couldn't go for a poo or anything, but because of my diet I didn't need to, it was very odd but seemed to work.

When it was removed I made the mistake of looking right away and still was unhappy with the exterior, so they performed another labiaplasty, the inside stuff worked, I have no real scarring and I'm happy with it, but how I looked on the outside was very tough because of what had happened due to the operations when I was a baby and in London at UCLH.

I had to dilate for 10mins, 3 times a day, which was a lot more managable. Now I have about 7cm length and dilate every other day for about 10mins.

It was such a contrast having it all done in Brazil. They are all very accepting and want to know your story,. The stigma about the condition I have seems to be almost non existant over there.

I can highly recommend going to Brazil for vaginoplasty. Good length has been achieved, all the hospitals were clean. Yes there was a language barrier, but I managed fine and Dr Piazza's English is very good. The operations cost about £14000 in total and I didn't even try to get the NHS to fund it as I had reached the point I couldn't wait any more, and thankfully my parents were willing to take out loans for me to sort my life out. It's no easy task flying 6000 miles from home for an operation like this and a lot of that time I was alone too, but I had to do it.

If you want this operation done and are unable to raise funds then fight it hard and don't give up, try and get the NHS to pay for it. It's not available in this country so you have to try. When I finally came back my Dad succumbed to his cancer and passed away, so he has never really been able to see me get better and begin to lead a life which was not focused on what was in-between my legs. It always seemed to go wrong whenever I tried to sort myself, which just added to the trauma.

Still, even upon my return to the UK I was still not completely happy with my exterior look, I tried a doctor on Harley Street, who did a labiaplasty at the cost of £7000 which my Gran paid for because my Mum had no money left. I have to say don't bother with Harley Street, they left me with a load of scars and it really felt like they just wanted the money! They wanted me to go in a magazine and do a story of myself so they could get the advertising off my back. I thought it would be like selling my soul to the devil.

I gave up in search of making my exterior look any better until this year when I went back to the NHS to see Dr P Mallucci at the Royal Free Hospital London. The operation was fine, I have faith in what he has done and the early results look better then what they were before. My only complaint again was the nursing staff and lack of communication but let's just see how it goes. I'm bored of typing now, as I'm sure you are bored of reading, but I hope this helps someone in some way. Just don't give up on what you are doing, no matter what.