'I felt worthless, sexless, a freak.'
A rare congenital condition means Louise Everett was born with no womb or vagina. She describes the agony of adolescence, the pain of infertility – and her decision to adopt
Tuesday 07 August 2012
My friends proudly marked the day of their periods with a red dot in their diaries. But at 15 I still hadn't started mine. Looking back, I must have known there were problems "down there". A typical teenage self-explorer, I was starting to realise that my body didn't match the pictures I'd seen in sex education leaflets.
I remember thinking perhaps being in love, or with a man, would make my vagina magically appear normal.
My doctor prescribed the contraceptive pill to speed things up hormonally. Nothing changed, and a few months later I was referred to a gynaecologist for an examination and full ultrasound.
That day at the hospital was harrowing. The frown on the face of the woman scanning my belly, my mum crying and the shock to hear that I didn't have a vagina or a womb. I was diagnosed with Mayer Rokitansky Kuster Hauser syndrome (MRKH), a condition affecting one in every 5,000 women, which affects the development of the sex organs and the reproductive system.
The doctor said the fact I'd never have my own children was "a tough pill to swallow".
At the time of diagnosis, my mum blamed herself, told me it was her fault and I took up that blame as well. My gorgeous mum: incredible, kind, loving and generous woman. How could I ever be so cruel?
Yet MRKH, I discovered in later years, has no identified cause. It's a random "fact of life". My mum cried when I told her this news. It was the whole idea of being abnormal that shook me most. I wanted to have a sex life just as everyone around me seemed to think I should.
My train of thought then was that sex was natural because it led the reproductive drive and that women were meant to have babies as their natural destiny. In this view I was worthless. Sexless, wombless: a freak. I was desperate to be normal. When I was diagnosed, I told my then-boyfriend. He was wonderfully supportive – saddened but he also helped me through the experience.
I found it much harder with female friends. They'd all been sharing the arrival of their periods and sexual developments. The knowledge that I was profoundly different seemed tougher to share because it set me apart from them in my eyes. I told one friend, in confidence, who then passed it on and, before I knew it, the whole of my year group seemed to know.
I'd compare myself to any woman I passed on the street and imagine her better than me by assuming she was physically "normal". I felt entirely unfeminine.
There was the possibility of treatment, though. Doctors couldn't give me a womb, but they could help me "create" a vagina so I could enjoy a "normal" sex life. The therapy works by slowly stretching the skin already present. It's very successful and less aggressive than surgery, which is common in the US. First, though, I underwent psychological screening. The psychologist told me she'd never met anyone with my condition before, a comment I've met many times from medical professionals. I was young and fragile and her remarks just exacerbated my feelings of alienation.
I went ahead with the treatment but stopped after three weeks. Just a teenager, it seemed unnatural; disturbing. So I went into denial.
Instead, I travelled, first to France then to Spain, working and enjoying myself, yet always with the knowledge that my lack of sexual freedom held a barrier between myself and others.
During my teens, I had two long relationships with incredibly supportive boyfriends and managed to explore my sexuality without penetrative sex. When it came to friendships with other females, there's a level on which conversations about sexuality and bodies are normal topics – I simply had to stay quiet. I'd find ways to ask questions so I was included in the conversation without having to "out" myself.
Finally, on my return to the UK, I decided I wanted surgery, a quick fix (as I saw it) to grow and move forward with my life. This time, a wonderful GP advised me first to seek help. He saw I needed to understand my condition better and encouraged me to find others' stories, as well as factual information before making any decisions. This resulted in my discovery of the national centre for MRKH at Queen Charlotte's and Chelsea hospital. Three months later I had created my own DIY vagina using the non-surgical method.
Sexual freedom is wonderful. But it cannot bring you children, and throughout my 20s this has been the heaviest cross to bear. As a woman, you're constantly reminded of the fact. If you're heterosexual and in a relationship, it's not if you're going to have babies, but when.
Aged 19, I went to Australia and stumbled my way into the arms of my soulmate. In the beginning, I tried to talk him out of a relationship with me on because I couldn't "give" him children.
I really did see myself as a failure and that I'd be failing any man who was with me by not being able to bear children.
That was almost 10 years ago and we've come a long way since then. He's accepted our mutual infertility as a shared fact.
My ovaries are fully functioning so I'm hormonally "normal". The eggs are simply reabsorbed back into my body when they're released. My partner and I could have a baby by surrogate pregnancy. For us, though, to go to these lengths simply to produce a baby that's biologically ours seems selfish and unnatural. The world is over-populated. There are thousands of children already here in need of a loving family.
A womb transplant again just seems to me to take that drive of the ego even further. It's not that everyone should and must have children. Instead, we're going to adopt and feel very excited and positive about it.
We need greater awareness of MRKH and the centre at Queen Charlotte's and Chelsea Hospital is brilliant. Teenage girls need support and medical professionals need a better understanding of the complexity of the issues they're dealing with. My hope is that young women are not left feeling as confused and helpless as I did as a teenager.
It's also crucial that people are made aware that not all women can have babies; that not all women have periods. I'm passionate about choice for women: having babies should be an if, not a when question.
Interview by Sophie Goodchild
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