Rosie's Story 

An AIS woman told me how she'd read her GP medical records and how the content of the various doctors’ letters often seemed at odds with her own recollection of events. As an exercise, she'd laid out a formal comparison of ‘what the doctors said’ at any particular time alongside ‘the patient’s viewpoint’ at that time and she said she found it very illuminating and therapeutic. I've decided to do the same for the aspect of AIS that has been of most significance to me:

I had a bi-lateral hernia repair operation aged 2 years.

Note in GP records 1956 (patient aged 8): PA normal. Vulva appears normal. Uterus not palpable PR [per rectum?].

Note in GP records 1958 (patient aged 10): PA normal, vulva normal. PR no abnormality detected.

My view of things: My parents told me aged about 10 or 11 that following the hernia repair operation the surgeon had suggested that I would probably not menstruate or be able to have children. My parents have never brought up the subject of my condition again since then.

I discovered my absent vagina for myself very soon thereafter but kept this to myself. The family GP would carry out rectal examinations during my childhood/teens (still looking, no doubt, for the uterus that would signal a potential for fertility – the ‘be all and end all’ of femaleness, as far as male medics are concerned) but never, as far as I remember, looked to see if I had a vagina. I knew nothing of plastic surgery so I told myself that it was the end of the road and that I had no chance of ever having relationships or getting married. And I deduced quite early in my teens that because of the absent vagina this was not merely a failure in female organ function but a serious developmental failure.

Note in GP records 1962 (patient aged 14): Feminized testicles.

My view: I knew in my heart (aided by what I’d furtively read about inguinal hernias in my parents’ medical dictionary as a young child) that I was intersexed but I could not talk to anyone. I suffered from ‘elective mutism’. I was not referred to a specialist until I was 18.

Provincial diagnosing gynaecologist to GP, Oct 1966 (patient aged 18): Thank you for referring this young lady .... As you say, she is an intelligent girl who is going to university tomorrow .... There is a short canal, not more than half an inch long above the hymen. .... As you know it is possible to reconstruct an artificial vagina by a number of methods but I do not think this is an immediate problem. And in Jan 1967: .... Under anaesthesia the fact that she has an absent upper two thirds of the vagina was confirmed. There is a dimple above the hymen about a centimetre in depth .... I discussed the matter in detail with both Rosie and her parents and I told them that while she would not produce a family there was no reason why she could not ultimately consummate marriage should she wish to do so. I think it would be possible to deepen the vagina quite adequately for coital purposes, by the use of an obturator which is placed in the loose connective tissue in the vaginal dimple, and by continued pressure over a matter of months, it usually provides a useable vagina. This could be commenced about six months before marriage is contemplated.

My view: I remember the gynaecologist talking about plastic surgery being an option in the future, if I wanted to get married, but the idea of pressure dilatation was not mentioned during the consultation. Why did he mention it to my GP, in a letter, but not to me? I felt myself to be in a Catch 22 situation – about to go to university amid the sexual revolution of the late ‘60’s but trapped by the moral attitudes of a previous generation. It seemed like telling someone with no legs to come back when they could walk so that artificial legs could be fitted to be able them to run. How was I going to meet a ‘marriage’ partner when the very thing I dreaded most was anyone else knowing of my situation – even female friends, never mind potential male partners. But I was far too traumatized, intimidated and embarrassed to say anything to this overweight middle-aged man on the other side of a big desk who’d just confirmed that I had XY chromosomes and testes, no vagina and that I had ‘testicular feminization syndrome’ (all of which I’d deduced many years earlier, by looking in medical books, but been too afraid to mention to anyone).

I just wished some kindly female ‘auntie figure’ could have swept in, taken over, and sorted things out for me (not cured my AIS, of course, but just discussed what my options were going to be for intimacy with another human being). My mother’s first and last words on the situation – in the car on the way home – were “Oh well, there’s more to life than sex.” No aspects of my AIS were mentioned again in the family until about 30 years later, when I forced myself, and them, to talk about it, for the first time.

A London gynaecologist to GP, Sept 1972 (patient aged 24): .... On 21st July I performed laparoscopy which confirmed the presence of testes and in view of the risk of malignancy to which these are subject, they were removed. .... I had in mind the desirability of making an artificial vagina at a later date but since leaving hospital she has been on holiday and has had intercourse. This has resulted in lengthening of the rudimentary vagina and I think it would be worthwhile postponing any intervention for six months to see if further intercourse will produce satisfactory improvement in this respect. ...

My view: He must surely have been joking!! This was totally in his imagination! There was absolutely no way I was going to let any appendage of any male person anywhere near that part of me. I still hadn’t spoken to anyone about my medical condition, so the last thing I was going to do was risk being confronted with the whole thing, by a partner discovering I didn’t have either pubic hair or a vagina. Perhaps I’d lengthened it a bit by experimenting with finger pressure and maybe my coyness, or reluctance to admit this, had been interpreted as admission of a relationship – who knows – but I most certainly had not had sex.

I still desperately wished I could see a nice friendly female counsellor but I was far too embarrassed to suggest this – I always wanted to get out of the room as fast as possible. I didn’t know how I was ever going to find a partner. It felt hopeless. I couldn’t press for surgery because they’d ask where the long-term boyfriend was and they’d think I wanted to be promiscuous. Why was no one offering to help me? Couldn’t they see that it was all too much for me to bring up on my own, especially in front of a stuffy middle-aged male gynaecologist surrounded by student doctors all in white coats? I decided they’ve just given up on me because I was such a freak and that I wasn’t entitled to have any sort of sexuality. The use of dilators had still not been mentioned to me.

Same gynaecologist to GP, Jan 1976 (patient aged 27): .... When I last saw her she was not having intercourse, and as often the short vagina elongates with regular intercourse, I felt I should do nothing for the time being. The situation and outlook has, of course, been fully explained to her.

My view: This seems like saying “When I last saw her she was not breathing, and as often life is sustained by regular breathing, I felt I should do nothing for the time being.” I wonder if he had really considered why I had not yet had intercourse. Could it possibly have been something to do with the fact that I didn’t have a vagina? The only thing he actually ‘explained’ was that a surgically-created vagina would probably close up if I wasn’t having regular sex (he was thus obviously only considering one of the various surgical procedures – the skin graft procedure), and I got the strong take-home message that I was not entitled to have a vagina unless I was having regular sex. I felt that he and the previous gynaecologist had been laughing down their sleeves at the mere notion that anyone would want to be intimate with me, because of my condition. Again, pressure dilation was not mentioned and I was still too embarrassed and stigmatized to ask for any counselling (and anyway, I’d been effectively told by my parents that my condition was 'no big deal' and that I should just shoulder it all, alone, and get on with life).

My sense of myself as a woman, my self-esteem and self-confidence were at rock bottom. I just wanted to be able to think of myself as a normal woman so that I could interact normally on all social fronts, even if I never found a boyfriend. I feared becoming too friendly with women in case I might get drawn into some discussion of periods and babies, and I couldn’t even talk with them about sex and relationships because I hadn’t had any. I had never even been able to bring myself to tell a female friend that I couldn’t have children, never mind anything else about my situation. And because I knew I couldn’t have sex with a man – and because my absolute worst nightmare was the possibility of a partner finding out – I shrank from even superficial social encounters for fear of the psychic pain they might lead to.

I decided to ask the provincial diagnosing gynaecologist to operate. I was too frightened to seek out, say, a London specialist who might have had more expertise in vaginoplasty because I had never voluntarily brought up the subject of my condition in front of another human being and had taken on-board the unspoken message that it was something so secret and awful, and unspeakable, so that the fewer additional people who got to know about it the better.

Original diagnosing gynaecologist to GP, May 1976 (patient aged 28): .... It was agreed that an artificial vagina should be constructed.... I operated on her today and undertook a McIndoe-Read type of artificial vagina. It was really an inlay graft between the bladder and rectum. .... The mould which supports the graft is left in situ for about 3 months. ....

My view: The mould, which weighed a ton, was being forced out of the cavity just a few days after leaving hospital. I was re-admitted to have it pushed back under anaesthetic and the labia were stitched together to stop it being extruded. The same thing happened again – it was forced out, through the stitches (excruciatingly painful). I was afraid to push it back because that was painful too and I didn’t know what damage I might do to the graft inside.

Same gynaecologist to GP, June 1977 (patient aged 29): .... The artificial vagina has constricted considerably since she has given up using the dilator. It is, however, adequate I think for coitus. There is still a little granulation tissue in the vault which is slowly epithelialising and I think we should leave this alone for the time being. ....

My view: I had been given no instruction or demonstration of dilation by the hospital staff, but just sent home with the mould in place. I wasn’t even given a dilator and, anyway, I never even got to the point where I could have removed the mould to reveal a new vagina which I might then have kept open via dilation. The mould was just gradually forced out by the contracting tissue, to the point where I couldn’t even sit down. And why was the mould so heavy – had gravity not been taken into account? The whole exercise was a complete waste of time and I just suffered a lot of physical and emotional pain, and was left with a permanent oblong 5” by 7” scar at the skin donor site – just one more thing that I’d have to ‘explain’ to any prospective partner. The vagina seemed to have shrunk back almost to its pre-operative length, so there was no way that it was “adequate for coitus” and I was still no nearer being a ‘normal women’ who could have a relationship.

During my 30s I had some opportunities for a close relationship with men whom I really liked but I always rejected them at the very first approach, knowing that a relationship couldn’t go anywhere and absolutely dreading getting into the situation where I would have to explain things that I had never articulated to any human being before. In 1986, a female endocrinologist became the first and only person to actually encourage me to seek treatment. She referred me to another gynaecologist.

Endocrinologist to GP, June 1986 (patient aged 38): .... She was also operated on by a gynaecologist in ____ who was trying to construct a vaginal opening. This ended in disaster in the early post-operative period. I am therefore arranging for her to see Mr. ___ [new gynaecologist] about a possible amnion graft [vaginoplasty] which is a development since her last bout of surgery and would offer her a greater chance of success. ....

So I had a consultation with the new gynaecologist.

New London gynaecologist to endocrinologist, June 1986 (patient aged 38): .... I note that she had a McIndoe-Read vaginoplasty in 1976. This has never been a success and the mould was extruded a short time after the operation. She does not have a partner at present and really wanted to discuss and consider the possibility of further vaginal reconstructive surgery in case she should have a relationship in the future. .... Examination of the vulva and vagina revealed well-developed labia. There is a ¾ inch blind narrow vagina with considerable scarring at its vault, with very little elasticity. We discussed the three possible operative options of a repeat McIndoe-Read operation, a vaginoplasty using amnion for graft material, or a Williams vulvo-vaginoplasty. In view of the previous attempt at a graft procedure and the quite marked scarring, I would favour a Williams vulvo-vaginoplasty in this case. If however she found the anatomical arrangement of a Williams operation unacceptable, it might be possible to do a repeat vaginoplasty using an amnion graft. I am going to send her some photographs of the results of the Williams operation and she will let me know if she decides she would like to have the operation done.

My view: During the consultation he wasn’t able to adequately explain what was involved in the Williams procedure at all (he tried to draw a diagram then gave up half-way through saying he never was an artist etc.) and it all sounded highly complex and that it would result in a change in the appearance of the external genital area. He never did send me the promised illustrations, even though I subsequently wrote to remind him. I felt very despondent – that I wasn’t sure if it was worth all the physical and emotional pain – to go through yet more surgery – if I didn’t yet have a boyfriend. All I wanted was to have the basic ‘equipment’ that other women just take for granted. It didn’t seem like a lot to ask and yet medical science didn’t seem to have sorted out how to provide this because it was too busy making advances in fertility treatment for women who were already a million miles ahead of me in the expression of their femaleness. So I let it slip. Pressure dilation, or the possibility of talking with a counsellor about my medical condition, had still not been mentioned. I had still not discussed anything about my condition with anyone, not even my parents or my sister.

In 1991, I met a man to whom I seemed particularly well-matched and we both wanted to have a physical relationship. I panic’d and asked the gynaecologist to carry out the Williams procedure as soon as possible. I had another consultation with him and he wrote to my GP saying that I had “a short vagina of about one inch” and that he would carry out the Williams operation. But I had to wait 10 months for the surgery, by which time the partner had cooled off altogether (he knew I had a problem with penetration but I had been too frightened to tell him why). After the operation I was given a dilator (just in case I needed to stretch the new vaginal entrance – there is no likelihood of lengthways contraction with the Williams method). This was the first time that I had ever seen a vaginal dilator. I was 43.

Same gynaecologist to GP, Jan 1992 (patient aged 43): I saw this patient following her recent Williams vulvo-vaginoplasty. She is now finding things completely comfortable, has established satisfactory intercourse and has been using the dilator without problems. On examination the vulva is now well healed, and vaginal examination readily admits two fingers and the depth of the vagina is perfectly satisfactory. I have advised her to use the dilator intermittently and have not arranged to see her again unless she has problems.

My view: Where on earth has he got this idea from ( “.... has established satisfactory intercourse ....”)? I had tried out the new vagina only once with the partner – the relationship was essentially over before it started. It would only accommodate him halfway before it hit the top end (and this was quite definitely a length problem, not a width problem or vaginismus). The partner told me that “because the physical side of the relationship hadn’t gone anywhere in the early stages, we hadn’t bonded properly.” I eventually told him the whole story of my AIS (he was the first person I had ever told) and he confirmed, when asked, that the vagina was too short (he was actually quite large). He freaked out at the whole revelation and disappeared into the sunset. This was probably partly due to the fact that I was in such a terrible state whilst telling him – because I’d never been able to practise by hearing myself say the words out loud with non-critical people. I was totally devastated by the whole experience and suffered an emotional breakdown. I sought the advice of another gynaecologist.

Another gynaecologist to GP, Jan 1994 (patient aged 45): .... The vaginal introitus was satisfactory and the total vaginal depth was somewhere around 4 to 4½ inches. Although this is clearly short, it is not disastrously so and clearly the two previous operations have been partially successful. If I were going to try and improve matters I would perform a colovaginoplasty. This is a big operation in which a segment of the sigmoid colon would be attached to the apex of the vagina. This would of course give adequate depth but is it really necessary to embark on such a procedure?

My view: When examining me, this gynaecologist had muttered something about not being able to find the way into the vagina (because of the external changes resulting from the Williams procedure) then suddenly exclaimed “Oh, I see.” when he realised that the entrance was further forward and at a different angle than expected. This didn’t exactly make me feel any better about my anatomy.

I accepted that the intestinal transposition operation seemed like a big risk and I embarked on a quest to try and get some psychological help and saw a psychosexual counsellor for a few sessions until she said she couldn’t see me any more. She referred me to a plastic surgeon who specialized in transsexual surgery.

Plastic surgeon to psychosexual counsellor, May 1994 (patient aged 46): .... As far as the vaginoplasty is concerned, I found that she had quite a good cavity which was soft and relatively unscarred. It may be a little deficient in length but many of the gender reassignment patients that I have seen and operated on have been quite happy with this extent and further surgery would be quite complex. ....

My view: People seemed to be telling me I should make the most of what I’ve got, even though sub-optimal, because there were no simple surgical methods that would give me further length. Gynaecologists seem to go on about how “There’s no such thing as ‘normal’” and that “The vagina is an elastic organ designed to fit any sized penis.” I had proved this not to be the case, for me. All I know is that my vagina was totally inadequate for the one man with whom I’d had sex. I decided I was fed up with male gynaecologists and wanted to see a woman.

Woman gynaecologist to GP, Sept 1994 (patient aged 46): .... On examination, to my surprise, she has almost normal appearing external genitalia. Her vagina is excellent in length and I demonstrated this to her by easily inserting a 2, 3, 4, 5 and 6 dilator fully. Normally in our experiences any girl who can insert a size 5 dilator comfortably is able to have normal intercourse. There is absolutely nothing further which could be done to improve this patient’s vagina, either by surgery or indeed using dilators as to do so would create an abnormally large vagina. Clearly her problems are psychological and not her vagina. It is very sad that over the years she has not had the opportunity to discuss her condition, and this related in her very distressed attitude to her problem and specifically to her vagina which she relates to being the basis of all her problems. ....

My view: Well, if my problems are all in my mind then why have I never been offered help with this? The comment about “not having had an opportunity to discuss..... etc.” seemed strange coming from a gynaecology department that I know to operate a policy of not telling patients with AIS the full truth about their condition, thus condemning them to the lonely isolated and stigmatized world that I know so well. All I could speak of was my actual experience, which was that the vagina was not long enough for my particular partner. Maybe I just happened to have chosen the man with the biggest penis in the world. Who knows.

Since then I have tried a series of counsellors and therapists, and feel no better about my prospects for an intimate relationship. I have had one other relationship with a man who was considerably less well-endowed than the first partner, and the length of the vagina in fact seemed OK but he immediately made a comment about the angle not seeming right, and having initially been extremely keen, suddenly lost interest in physical contact after a couple of ‘encounters’ (although we still meet occasionally as friends). He too mentioned success on the physical side as being necessary for ‘bonding’.

Clinicians keep telling patients with CAIS that they are “just a normal women with a fertility problem” (most CAIS women seem to have the lower two thirds of the vagina) so my view is that either I’m equipped to function normally as a woman (in which case there is no need to tell a partner anything in the early stages) or else I am not thus equipped (in which case something should be done about it). My most recent psychotherapist suggests that my reticence to share all my secrets with a partner in itself restricts intimacy and that this is my main problem. There is a fundamental conflict, two mutually incompatible desires – the desperate desire to be able to pass and be accepted as a normal woman in a relationship (with a reluctance to risk destroying the ‘illusion’) with, at the same time, a wish to experience a partner’s reaction to the truth (in the desperate hope that the knowledge will not make any difference to him). However, I eventually asked the first partner if it would have been better had I told him everything in the early stages and he said “No.”

Having read my GP medical records, I now realise that the gynaecologist who diagnosed me at 18 actually mentioned, in a letter, the possibility of pressure dilatation (albeit conditional upon a ‘contemplated marriage’) and yet this was not mentioned to me as an option until I was 43. I also found out at this point that the pressure dilatation method has been around since 1938 and that Queen Charlotte’s and Chelsea Hospital in London have for many years operated a well-organised programme of instruction and monitoring of patients in the use of this method and yet this was never suggested to me until after I had undergone two surgical operations.

Above all, though, there has never been any consideration of the notion that my self-confidence and self esteem as a woman might have been boosted had I been able to think of myself as having the right basic equipment, irrespective of whether or not I actually used it (but so that I could have embarked on a relationship if one presented itself). I fear now that so much emotional stunting occurred in my teens that my chances of building an intimate relationship and sharing my life with anyone were ruined from the outset. This, together with the fact that I was not able to talk about my condition with anyone until I was in my 40s may mean that, ultimately, a significant part of it has all been in my mind – but the fact is that I haven’t been able to resolve it on my own. At the end of the day, it’s not about sex per se, it’s about feeling that you have a chance of intimacy with another human being and of sharing your life with someone.

I am very angry that the psychological/social side of my situation has never been given any attention whatsoever by the so-called caring profession/s. Meeting other AIS women at long last, through the support group, has made so much difference in the last few years. It has helped enormously in making me feel less abnormal, and less alone. This is the single most therapeutic step that doctors could take and yet is almost invariably the one they are most reluctant to arrange.

I remember in my mid-teens, going to medical libraries to try to find out what the hell was wrong with me, and seeing those clinical photos of AIS girls/women with patches over their eyes. In some ways, they should have been reassuring to me - they proved that there actually were other people out there, somewhere, with this self-same condition that I'd decided (correctly as it turned out) that I myself had. Thinking about it now, I could have written to the authors and asked to be put in touch with their patients, but a) I just knew what the answer would be ("Why would anyone want to talk about it?") and b) I suppose they were just so de-humanized in the photos that I hardly believed they were real people.

However, I feel that it is too late, in middle age, to now start the sexual learning process that should have taken place when I was in my teens. If only a doctor had put me in touch with just one other patient when I was younger (and offered some sort of counselling) then I might not have spent most of my life feeling I was a freak with a terrible secret that could never be articulated; and that I had to keep myself apart from the rest of humanity.

Note: Since writing this, I have taken part in Dr. Cathy Minto's research study on vaginal length and treatments for vaginal hypoplasia (see 'Research Studies' page on the AISSG website). She measured my vagina using a dilator and told me it is 8½ cms (nearly 3½ inches) long and that this is on the short side. She has read the doctors' letters from which I quoted above and pointed out that there was a large variation in the length quoted by the various medics, and she says the woman gynaecologist in 1994 was wrong in telling me it was of normal length.

My advice to younger AIS women with an absent or short vagina is not to rush into having surgery. I had two lots of surgery and although my vagina is now considerably longer than it was to start with, these interventions have not enabled me to have a sex life. I just feel scarred, and 'altered', on top of the inadequacies of AIS itself, and with no tangible benefit. What might have facilitated a sense of having a sexuality, and being able to express it, would have been the chance to talk about it all when I was younger.... with other AIS women.... with a counsellor.... and to have felt more comfortable with myself.