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The first of two articles by adoption social worker Sheila V. Naish (now retired). This one appeared in the Autumn 1992 edition of Issue, the magazine of the UK's National Fertility Association:
My mother told me never to tell anybody. I was 14. She went home. I was left in hospital. Later she told me she cried for 3 days. After that my mother and father were terribly protective towards me all I could feel was their pity. I never heard the name of my condition, or saw it in writing till 10 years later when I applied to adopt. When I saw it baldy stated in the adoption report 'Mrs. K. has no vagina and no uterus'. I wept myself to sleep.
Talking about infertility hurts as often as it heals, but some causes are easier to mention than others (people differ anyway), but the women born without a vagina (and in various combinations uterus/ovaries as well), or who have suffered irreparable injury, are still, I believe, a group set apart (and so are their partners).
Often discovery occurs, drastically, at puberty. Devastated parents don't always handle the situation sensitively, muddling through their own grief somehow, but ending up by closing doors, leaving wounds. Who can they turn to? Brief medical information they will get support, advice, counselling, probably not.
From that day forward a woman faces a lonely road she has to 'grow up fast'- in the face of friends' daily chit-chat and speculation about sex and relationships, the biology lessons, the 'serious bit' in the school curriculum. She knows that choices lie ahead she hardly knows the name for, let alone what they imply. It must not slip out!
One day I couldn't bear any more. My parents had been particularly sugary and uncomforting. My best friend had told me some details about herself and obviously expected something back. In a rash moment I told her in half a day it was all round the form. Fortunately (or not), they basically didn't believe her, and I was helped out of a spot by a doctor's daughter who told them loftily it wasn't possible. I never risked a confidence again, though, until I met my husband he's the bravest man I know.
As an adoption worker, now an independent infertility counsellor, I am limited. I don't have information about numbers, or the range or proportion of choices such women make when it comes to partnerships/sexual relationships; celibacy; apparent promiscuity; finding their own way with partners of either sex. What I do know, from 15 years in an adoption agency, is that a small proportion of women undergo a vaginoplasty (surgery to produce an artificial vagina) a painful and uncomfortable business. Only the couple themselves can weigh up whether it is worth it. It's a lonely decision. Apart from the people she meets briefly on the hospital ward, the sufferer has no opportunity of sharing experiences with others in the same boat.
During my time in adoption I've met a handful of women and their partners whose ordinary day-to-day courage has struck me. (After all, honestly, how many days do you get through in a year when The Topic doesn't come up? not many!). I believe that sharing experiences with others who have been through the same thing could be a massive relief and support. This autumn I shall be running a support group for women who have undergone, or who are contemplating a vaginoplasty. The group will meet in Bradford or Halifax, somewhere central, comfortable, private; in an atmosphere of complete support and confidentiality. If you'd like to come please contact me on ______ [phone no.].
PS. This is just a beginning. I know I've said nothing about men not about the partners, who might like a group too. (Possible, open to discussion later). Also not about the men out there, equally quiet and lonely, who lack a penis or who have suffered severe injury (and their partners)........ that is perhaps the subject of further work.
Sheila published a follow-up article in the Spring 1993 Newsletter of The British Infertility Association:
A woman born without a vagina (and in some congenital conditions minus a uterus and ovaries as well) faces a lonely road. Her condition may become apparent in childhood, but it is more commonly discovered in the teens. Devastated parents can't always handle the situation sensitively, muddling through their own grief and quilt somehow, but ending up by closing doors, leaving wounds. It will be a matter of luck whether skilled counselling is there when it's needed. A woman in this situation faces the implications of a condition which sets her apart in a unique way throughout her life.
If she is offered a vaginoplasty operation, a teenage girl may feel under pressure from parents and consultant to undergo surgery at a time when she can hardly imagine the long term consequences. She knows that choices lie ahead she hardly knows the names for, let alone what they imply. In the 1960's or 70's, on the other hand, she was likely to be told, "Come back if you're thinking of getting married, and we'll see what we can do".
Whether she grew up in the 1950's when secrecy about sexual matters was still the norm, in the 1960's with Flower Power sprouting all about, or whether, she was at school last year, facing the daily chit-chat and speculation about sex and relationships, one certainty prevail it must not slip out! Few women feel safe to risk such an intimate disclosure to anyone. The effect on life and relationships can only be imagined. Some women describe a habitual 'holding back' from any kind of closeness for most of their adult life. After all who can you trust, for certain?
I work now as an independent infertility counsellor, but during the 17 years I was employed in an adoption agency, I met three women who had married following vaginoplasty surgery. Within the process of an adoption assessment they earned my undying respect for their courage and that of their partners, and concern for their isolation.
Nevertheless I am limited. I don't have information about numbers, or the range of life choices such women make regarding partnerships/sexual relationships: celibacy? apparent promiscuity? partners of either sex? How many want, or achieve marriage or a relatively satisfactory outcome following a vaginoplasty?
For some of these women (not all), sharing experiences, thoughts and feelings in a group with others who have been through the same thing could be a relief and support. Following a brief article I wrote for Issue Magazine about a proposed support group, I received letters and phone calls from women in various parts of the country who longed to break their silence, provided they were assured of a safe and confidential setting.
What would they expect to get out of it? Mutual support, perhaps the relief from isolation, talking about feelings, sharing information, looking at decision-making, resources, options, lifestyles, future plans, the effect on family, partners, and other relationships.
I was lucky at this point to receive the enthusiastic help and encouragement of Richard Lilford, Professor in Obstetrics and Gynaecology at the General Infirmary at Leeds. With his backing, I hope to hold an initial meeting in Leeds on a Saturday in Spring/early Summer. This would be for women who have undergone a vaginoplasty, are contemplating the operation, (and for women who decided against it as well.) To protect medical confidentiality, invitations to attend this first meeting will go out from hospital departments only. I will personally only have names and addresses of women who have contacted me independently.
The purpose of an initial meeting will be to learn from the women themselves what kind of support group(s) they would like, and for them to begin sharing experiences if they wish. With confidentiality and safety being such an issue any group will need to start off with a 'neutral' title and take place in a hospital setting. At this stage the group needs to be for adult sufferers themselves (16 and upwards). I am very well aware of the needs of parents, who should have a group for themselves in the fullness of time.
[She gave her contact details]
The first meeting of Sheila's vaginoplasty support group took place on 8 May 1993 in Leeds. 11 women attended from all parts of the UK and all but 2 of them had had a vaginoplasty operation of some sort (and one of these 2 was a mother representing her 16-year old daughter who had recently had the operation).
The meeting was addressed by Richard Lilford, Professor of Obstetrics and Gynaecology at Leeds General Infirmary and an expert in vaginoplasty surgery [has now left Leeds]. He outlined the various types of operative procedure, pointing out their advantages and disadvantages and concluded that no single method has proved totally successful and that treatments are continuing to evolve. He described some of the adaptations of the McIndoe procedure that he had worked with, using skin from various donor sites on the patients body and including the so-called paddle flap technique. He then left the participants to a private session in which they each told their story.
The reasons for surgery were various ranging from cancer (necessitating removal of the reproductive organs) to a variety of congenital conditions in which the vagina was partly formed or absent. Many participants didnt appear to know (or chose not to mention) their actual diagnosis.
Most participants were very eager to talk openly about their situation, probably for the first time in their lives in an open forum like this. Individuals shared many aspects about their diagnosis, the operation and the long-term effects on their lives. Topics covered included a) the range of medical and hormonal conditions leading up to a vaginoplasty, b) the effects of diagnosis at different ages, c) how to help children/teenagers needing vaginoplasty, d) whom do you inform about your condition, e) good and bad experiences of telling friends and colleagues, f) whether to broach the subject to the in-laws, g) the anguish of infertility and general insensitivity towards childless people, h) how it feels to carry this difference always, i) practical problems of managing symptoms, j) relationships/loneliness, k) feelings towards ones parents, l) sources of strength/support, m) sexuality.
All those present found the sharing and discussion helpful, supportive and at times moving, and were willing for their phone number and first name to be offered to anyone who had undergone or was contemplating a vaginoplasty operation and to the parents of children who would need it eventually.
It was agreed that Sheila Naish should contact the BBC Womans Hour programme, GP magazine and Doctor magazine to see if a carefully presented contribution might make support available to a wider audience.
Further meetings of the group took place on 18 June 1994, and on 29 July 1995. However, Sheila no longer runs the group since she found it too onerous during her retirement, and the function of the group has largely been taken over by the AIS Support Group.
Note that Queen Charlottes and Chelsea Hospital, London, also runs
a support group for around 100 patients with vaginal agenesis. It's purpose
is mainly to provide patients with support and motivation in the use of pressure
dilation to lengthen the vagina.