Tilly's Story

[Received May 2007]

My story is long and I am not entirely sure where to start...

I'm 33 years old (34 this July) and live in ___________ in _____________. I have been toying for some time now to contact someone. I found your details whilst I was doing some research on the internet.

From my understanding and with the help of very loving parents who have sat with me on numerous occasions to explain what they know, I was born without a vagina or any female organs including ovaries or a womb, and at that time (1973) this was very new to doctors.

It's all a bit of a blur but from a very young age, I regularly visited Great Ormond Street hospital where I was examined on an annual basis. I have a scar running laterally above the pubic bone which I have had since I was a baby. It is my understanding that surgery was carried out at Gt Ormond Street to establish exactly what was wrong with me.

Bizarrely though, even though my parents never really discussed it with me as a young child, I always suspected and had a gut feeling that I was different. I continued to visit Gt Ormond Street until I was approximately 12 (I think) and I remember that I had stopped growing in terms of my height and was not developing as a young female should. My mother, who is gentle, kind and fiercely protective of her family, took me aside one day and tried to explain to me that I was a very special girl who was different in so many ways to everyone else but that in other ways, I was very lucky. I was strong and took in what my mother said to me but inside, it was everything I didn't want to hear.

I think I was about 12 and my school friends were considerably taller than me and had started developing breasts and pubic and underarm hair. Some were starting to menstruate and, at the time, it didn't really bother me. On my last visit to Gt Ormond Street, my doctor (whose name I can't remember but who was a very sweet man) said that now I knew, and because of my age, it was time I was referred to a specialist and that he could no longer help me. He confirmed that I would need hormone replacement medication in order to grow, to develop breasts, pubic hair and have feminine traits. At this time, he never explained to me that without the HRT my bones would deteriorate, that I would have a lack of energy and that I would have a low sex drive etc or that continuous use of HRT could result in osteoporosis.

So I said farewell and with a brave face met with a hormone specialist in London who prescribed Premarin. Very rapidly, I grew from 4 ft 11 to 5ft 5 and started to develop as he had hoped. It was this hormone specialist who referred me to Queen Charlottes and Chelsea Hospital where at the age of approximately 16/17 I met with a husband and wife called Dr Rose and Dr Edmonds (I think).

My mother had explained to me sometime before that there was light at the end of the tunnel and that there were ways to resolve the fact that I didn't have a vagina which was my biggest concern. Not being able to have children was just something that I accepted and I knew that it was only when I was older that it would really affect me. So being the type of person I am, I just wanted the problem to go away and didn't consider how surgery may affect me or whether I was ready for it. I just wanted a quick fix. So I went to Queen Charlottes where I met with this couple. They explained that they could create a vagina for me that would involve some surgery and that I would be required to dilate thereafter but I never really realised just what was involved.

So at the age of 17, I had surgery at Queen Charlottes and woke up to find a sponge stitched into my now new vagina which would be removed after 1 week. I thought it was all over, however the effects of the analectic [anaesthetic?] were not good. I became very depressed and I couldn't keep any food down. I was on a drip and became increasingly concerned about the fact that my body was rejecting food. But to cut a long story short, I spent the best part of 4 weeks in the hospital with my mother at my bedside 24 hours a day. They removed the sponge and began dilating which was incredibly painful. Day by day, my vagina was healing, and the results of this were that it was closing. They did not create a substantial cavity; they just merely made a hole. The whole experience was incredibly stressful. It didn't work and I was put through a lot of pain and discomfort. I felt abnormal and felt safer in the hospital environment than I did at home. The nurses became my friends and were wonderful people. I pretty much checked myself out and went home with my glass dilators with the intention to make this work. But it didn't and I didn't persevere, so in the end I gave up and my vagina closed.

Looking back, I realise now that I was not mentally prepared but I just wanted my problems to go away and I wanted to be normal. Through all of this and from the age of 11, I had experienced acute cystitis. After many years and many tests, it was confirmed that I had urethral syndrome but also that the neck of my bladder was very tight. I do believe the two are linked. I do believe that my condition was also linked to stress and through our own research, my mother and I found a wonderful urologist who is an amazing person and who some years later, referred me to another specialist who he said was the best in his field - Prof Tony Mundy at The London Clinic.

When I met with Professor Mundy and I explained my previous surgery at Queen Charlottes, he informed me that what they had done would never have worked in my case! This made me very angry and he explained that the procedure I would need was a vaginoplasty and that he would take a piece of my colon and use it as a cavity and reassured me that, even if I didn't have regular intercourse or dilated, the cavity would always be there even if the opening closed. It was a serious operation but once again, I wanted it fixed and so at the age of approximately 24, he carried out the surgery which was successful. I spent approx 1 week in hospital with tubes coming out of every orifice of my body. I was pumped up with morphine and felt like a freak but at the same time, I knew that the worst was over. To date, the cavity remains; however my perseverance with dilating has not been great and it is still not a fully functional vagina and one that I am happy with.

Sadly but perhaps justifiably, I believe that the condition, the medical experiences I have been through and the feeling of abnormality that I have always felt have affected my life in many ways. I have had several relationships but until recently, have always told 'white lies' about what is wrong with me and believe that psychologically, the reason my relationships haven't worked is because I still can’t have intercourse, and am scared of trying and being rejected or feeling like a freak.

I have had good and bad experiences which have certainly affected my confidence. The first being when my GP examined me after surgery and told me that any man would not know the difference which, as you can appreciate, instilled an enormous amount of confidence into me. However I also met with a skin specialist with regard to urethral syndrome who, on examining me with a view that I might have eczema in that area and that that was the root of my problems, told me that it was a mess down there and that he was not surprised I was experiencing problems.

I am fortunate to have wonderful parents who have been incredibly supportive; however, no matter how much support someone shows you, I have always felt very much alone. Lately, as I am learning more about life and understanding myself more, I have questioned whether what I have been through and what has happened to me in my life to date has had an impact on my life, my relationships and my health. I am a head strong woman who is successful in my job and in some areas of life but I have come to a stage where I really want to face up to things and try and work out who I am, what I have been through and what effects these things have had on my life. I realise now that I just took everything on board and kept dealing with it, but I believe it has affected me and I want to learn and understand more.

I have recently confided the entire truth to my sister who, it turns out, knew sometime ago. I mentioned that I was considering attending a [support group] meeting and she has said that she would be happy to support me if that is what I want. I really want to close this chapter in my life once and for all but believe I have to face up to things that I have just put to the back of my mind. Since the vaginoplasty surgery my hormones have been increased. I have a relatively stressful job and am a smoker. I have been advised by my GP that as a smoker and someone who has taken and will continue to take HRT for the rest of my life, will be more prone to osteoporosis. Every day I learn something new and am angry that no one really ever explained the intricate details to me. I have had to find so much out for myself and I want to help others.

Please let me know if I am a suitable candidate for your meetings and whether or not there will be other women in my situation or similar as I wouldn't want to expose myself and my problems to people who are in totally different situations. I would also like to meet with a physiologist [?psychologist] and would appreciate any recommendations that you might have. If you believe that this is not the right group for me, can you recommend where I might try next?

We replied:

Thank you so much for opening up and telling me of your history. I don't think you mentioned a diagnosis (a medical name for your condition)? Having an underdeveloped vagina is usually a symptom or sign which signifies an underlying condition such as AIS, or MRKH, or....? Did the Queen Charlottes medics not tell you your actual diagnosis?

Can I fill in some missing bits of info:

a) Prolonged use of HRT does NOT cause osteoporosis. It's the other way round. Oestrogens are needed to maintain bone strength so if you have no ovaries, or if you had abdominal testes (as in AIS) that were removed (this may be what your scar represents, a gonadectomy operation - do you know if this happened? You should have been told all this) then you need HRT to supply the missing oestrogen. Testes produce testosterone but that gets converted to oestrogen in the body tissues. This is why AIS women develop breasts naturally if they still have their testes at puberty.

b) Cystitis. You should ask your GP for vaginal oestrogen cream. One group member suffered with cystistis for years, and couldn't have intercourse thinking her vagina was too small/tight, but oestrogen cream cured both this and her cystitis, overnight. Note: docs may say you don't need it if you are taking regular HRT, but in your situation you may well need the vaginal cream for the specific local symptoms. Your needs are different to those of the post-menopausal women whom GPs usually see in relation to HRT.

c) Vaginoplasty is a general term for any surgery to create a vagina, it doesn't signfiy a specific method (there are many). If you've had the type of vaginoplasty where the colon is used (the Baldwin intestinal transposition method) you don't need dilation. It cannot close up because the colon is already an open tube. That is the whole point of that method. It is often used after other methods (which do suffer from the problem of stenosis, or closing up) have failed. You don't say what method was used for the first vaginal procedure but it may have been a variant of the McIndoe method (did you have some skin taken from elsewhere on the body to be used to line the new vagina?). See the Vaginal Hypoplasia page on our site.

It makes me as angry as you probably feel, that there is so much that has never been explained to you. None of this was new in 1973. AIS was first given a name (its old name, testicular feminisation syndrome) in 1953, some 20 years earlier. It was my mission, when I first started developing the group, to bring all this out into the open and empower people to seek the information that medics had kept under the carpet. Queen Charlotte's in particular have, or had, a reputation for keeping things from patients with these conditions.

You are doing absolutely the right thing to face this head on and find out as much as you can. I would advise you to get copies of your medical records and find out exactly what has been done to your body without due explanation.

But it doesn't make any difference at all regarding joining our group because we have members with a spectrum of conditions, many of which have vaginal hypoplasia/agenesis as a feature. You are most welcome to join and it would be really great if you could be with us at our forthcoming London meeting.

Did you mean a psychologist (counseller)? If so, I would recommend Dr. Lih-Mei Liao who is in the team at UCLH London (a colleague of Dr Conway who will speak at our forthcoming meeting). They work in the multi-disciplinary clinic that we helped set up in the mid-1990s (see our Recommended Clinicians page). I can put you in touch with her if you wish. She often attends our meetings - not sure if she'll be there this time.

I'm not sure... did you intend that I put your story on the web site? Maybe under a pseudonym if you wish to retain privacy? It would help others a lot if you were happy for this to happen. In any event, please do not worry about your identifying details (name, email etc.). No one sees our enquiry list except me and I never pass on details to other people without permission.

She replied:

When I read your email, it brought tears to my eyes as I have been struggling with this for such a very long time and to read your message as someone who can relate to my condition, it's like a problem shared is a problem halved. I would be happy for you to put 'my story' on your site but would appreciate it if I could remain anonymous.

In answer to your points.....

I do take daily oestrogen supplements and have done for years (Premarin 1.25mg + 0.65mg). I'm incredibly relieved to read that they are not the cause of osteoporosis.

I know for a fact that I have no ovaries and was told by my doctor at Gt. Ormond Street [Children's Hospital] and by my mother that I was born without ANY female organs at all.

I don't know if my childhood surgery was a gonadectomy. All I was told was that when I was born, they realised that there was a problem and I was referred to Gt. Ormond Street who performed an exploratory operation to establish the exact condition.

With reference to cystitis, I am certainly very knowledgable on the subject and recall being prescribed oestrogen cream but as I mentioned in my email, through time, I was able to establish exactly what the problem was (I believe urethral syndrome) which was definitely related to stress. Thankfully, beit that I have either grown out of the problem (touch wood) or just learnt to deal with it better, this is something I do not suffer from anymore. However, I am very interested to read that oestrogen cream can assist in the elasticity of the entrance of the vagina.

I would definitely like to meet with the pyschologist you mentioned in your email and would appreciate her contact details or the referral. I would also like to meet with an HRT specialist and check that I am taking the right levels of oestrogen for someone of my age. I work in ______ and live in ______ and would be happy to go privately if necessary. From experience, I cannot put a price on my health and happiness. If you know of a suitable HRT specialist who could run some tests, I would also appreciate the recommendation.

Going back to your email, the last major surgery I had was definately a colon vaginoplasty however I was under the impression from the surgeon that although the vaginal form [dilator] would be a permanent thing, the use of dilators would assist me in stretching the entrance of the vagina which prevents me from having intercourse with men as it is small and tight.

I'm not entirely sure what procedure was carried out for the first surgery. I've tried to wipe that period out of my life. I certainly know that no skin was taken from another part of my body. From memory, I have a feeling that they used a form of animal skin. I recall the mention of pig skin? Is this possible?

I will definitely request copies of my medical records. I think it's time I had a look at them. Can I get these from my GP bearing in mind I have had more than 1 or will I need to contact each and every hospital I have ever attended?

Thank you so much for trying to help me. It means so much to me.

We replied:

Dr Conway is probably the clinician with the most experience of HRT in these conditions. You can ask him at the meeting about the procedure for getting a referral. Once you are on the books of the UCLH clinic you can see him, Sarah Creighton (gyn) and/or Lih-Mei Liao (psych) on a single visit if you wish (since it's a multi-disciplinary clinic). Or you could see Dr Conway the first time then book another appt to see Lih-Mei.

Your GP records will have been passed on each time you changed GP so your current GP should have all the history from the GP viewpoint, e.g. all the various letters from consultants to whoever was your GP at the time of, say, diagnosis, operations etc. When I asked to see my GP records my GP just set me up in a private room, asked me not to actually remove anything, and let me read what I wanted.

If you clock on with the UCLH clinic you can also ask them to get hold of your hospital records from other hospitals where you've been treated. A number of group members have done this.

Occasionally the amniotic membrane from the birth of a baby is used to line a new vagina, so maybe that's what you had, or maybe pig skin as you suggest.

I'll add your story to the site as Tilly is that's OK.

Talk again soon. I'm so pleased you want to come to the meeting. You won't regret it.

She came to our group meeting and was inspired to see her GP a few days later in order to view her medical records, ask about bone density scans and request a referral to the UCLH clinic. She reported afterwards that he had told her she was diagnosed in 1973 as "a pseudohermaphrodite".

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