Alison Henley doesn’t remember the moment she was diagnosed. Aged just 16 at the time, the doctor’s words were subsumed by white noise, by the cloaking numbness that comes with shock.
Physical examination, a laparoscopy and an ultrasound had shown that Alison’s vagina was roughly the length of the nail on her big thumb, her uterus missing entirely. Like many women with MRKH, it was the absence of menstruation that raised alarm bells.
“It’s so left-field you don’t even assume that this can happen, that these two parts of the female body will just stop forming,” the 37-year-old British-born woman told Mamamia.
“As we grow up we think there’s an automatic passage through to parenthood and partnership, we just assume they’re the two things we’ll do with ease. And so when you’re told you can’t perform as a partner in terms of sexual intercourse and that you would never be able to experience pregnancy…
“I was already a teenager who was experimenting in not liking herself very much. My self-esteem was quite low. And [the diagnosis] just gave me licence to validate that. I was in a poor relationship with food and self harm. And that’s what I turned to for many, many years.”
Alison underwent treatment in London within weeks of her diagnosis. While surgical options are available for some women with MRKH, she opted to use the dilatory method to create a vagina. This involves the repeated manual insertion of dilators – cylindrical tubes that stretch the existing, shortened vaginal tissue. Alison spent four days in hospital to be guided through this process.
“It awful really for me. A psychologist once said to me, ‘If there was any period in your life I’d work on with you Ally, it would those initial days days in hospital,” she said. “Then I was sent home with my dilator kit, with of various sizes of these really ugly, clinical, sterile tubes where you have to insert them for 20 minutes morning and night. [A clinician told me to] hold pressure until you see your knuckles turn white, to even feel pain – then you’re pushing hard enough.”
The process took Alison nine months.
While she had created a vagina by the end of it, emotionally there was no relief. The sense of difference and the isolation that comes with that difference persisted. Her mother was supportive, but couldn’t relate. Nor could the handful of friends to whom she divulged her diagnosis.
“You feel like living in a silent movie. You feel that you’re sitting on the side of a conveyor belt which is life, wondering if you’ll ever rejoin it. There’s a disconnect from people around you,” she said.
“Friendships, they’re very superficial because usually you’re having to lie a lot. If you think about how much we talk about sex and children conversationally… I would find out, say, the names of contraception just so I would have something to interject if I was ever in female circles.”
As she entered adulthood, the “darkness” began impacting her romantic relationships. She chose men who weren’t looking for wife or mother – the two things she felt she could never be. While the two long term partners she’s had over the years both knew of her diagnosis, neither ever spoke of it.
Even superficial sexual relationships weren’t without complications.