Louise's Story

[Received Sept 2011]

My name is _____ _____ and I have AIS although I didn't find out until I was 28 exactly what was wrong with me. My parents told me I was born without a womb and this is what I believed to be the case. I have an older sister who has the same condition. She is 10 years older than me.

I used to see a gynaecologist in Leeds but I was basically kept dumb and the doctor only ever spoke to my mom rather than me, I just sat there waiting to be poked and prodded not understanding why, so when I turned 16 I rebelled and stopped going. 2 years later I had my first sexual experience and found that I could not have sex. This led to years of ridicule and abuse from people my age where I live due to the size of my clitoris and being unable to have sex. This led to me spending the next 10 years trying to block it all out with alcohol and drug abuse and constantly considering suicide.

After a while I decided to confront what my problem was by visiting another doctor in Leeds and he told me exactly what was wrong with me which then led to massive rows with my mom because I felt I was lied to for so many years and if I had the right information I would have made better decisions. My mom explained that the doctor advised her to keep it to herself as it may cause me emotional distress. Well guess what? He was wrong. It's caused me much more distress finally finding out after so long that something could have been done about it when I was a child.

I decided to try and start a new life away from my family and people who know me. I also found out that my sister had plastic surgery to enable her to have sex and reduce the size of her clitoris when she was In her early 20's. No one seemed to consider what my needs would be with regards to wether or not I would need surgery.

So, I'm seeing this new doctor in Leeds who to be honest is rubbish. I've told him god knows how many times that dilation is painful and I need this surgery but all he ever says is dilation is the best way forward. Best for who? Me or the NHS? I sent him a letter about 6 months ago again explaining that dilation is painful and not a suitable remedy for me. I received his reply yesterday!

In the mean time I decided to see a new doctor from where I am [living] now and straight away he has requested that I see a doctor in London for vaginoplasty. I finally feel as though I am getting somewhere but I should never have been allowed to get to this position in the first place.

If any parents who have a child with AIS read this please take my advice and deal with this condition while you're child is young. Don't allow them to get to an age where they start worrying about sex because they are different as they may end up like me. I constantly think about suicide because I see people in relationships and leading normal lives whereas I can't get close to anyone because I fear what they may think about me. There aren't that many men out there who would enter a relationship with a partner who they can't have sex with. I don't think I ever would commit suicide but the more often I think about it the more likely I am to do it.

We replied:

Many thanks for your email. Shall I put it on our personal stories page? If so, what name would you like us to use? Could I ask how old you are now?

Your story is fairly typical of the enquiries we get and I agree that it's awful that you were kept in the dark. Our group has been campaigning since the mid-90s for truthful disclosure with professional psychological support within the medical system, together with more emphasis on treatments for a short vagina. Such changes started to appear at larger regional centres in the late 1900s/early 2000s, with the advent of multi-disciplinary clinics (e.g. Adam Balen and colleagues in Leeds) but clinical psychology support is severely underfunded so not widely available yet.

Your options re: having sex should have been assessed and discussed with you much earlier. You obviously want the short vagina sorted out. Are you also saying you want clitoral reduction surgery?

Pressure dilation probably IS the best solution for the vagina. It will be uncomfortable but it gives the best result, with the most natural vagina. Ideally it does need psychological support from a specialist nurse or clinical psychologist though. Have you had that encouragement/motivation/monitoring?

Surgical methods carry all sorts of complications. You need to find out exactly which method the London doctor is recommending. Can I ask which hospital it is? The McIndoe skin graft method may leave you with a big scar on the body where skin is taken to line the new vagina, and which you may have to explain to sexual partners. The Baldwin intestinal transposition method, where a piece of bowel is cut out and moved to form a vagina, carries problems with persistent discharge because the relocated piece still thinks its purpose to digest food so keeps secreting digestive juices. The only method you should probably consider is the Vecchietti method which is the same idea as using the dilators but the vagina is stretched more rapidly via a contraption that looks like a torture device(!) inserted under anaesthetic. But be assured, you will get some pain! You shouldn't assume that surgery will be painless and necessarily successful.

I have attached a copy of an article about genital surgery in adults (Boyle, Smith and Liao paper).

Look forward to hearing your thoughts.

She responded:

You can use my story but change the name to Louise please. I'm 30 years old now. I didn't realize there were so many complications with surgery and will consider dilation again but I find it uncomfortable and painful. But I would still need surgery on the clitoris anyway to reduce the size otherwise I would never have the confidence to pursue a normal sex life. I also never realized how many women had the same problem as me and it has helped just writing to tell you my story.

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