Andrea's Story

[Received May 2007]

Andrea wrote:

This is the scariest e-mail I've ever written and the first time I've ever told somebody that something is wrong with me. I'm so scared right now that I'm crying so hard.

I'm a girl (24) and I'm in S_______. I've known my whole life that I wasn't like everyone else. I've never spoken to my parents about this and I hate them, because they've known since the day I was born that I have this condition, and they've never spoken about it or offered any help. I've been trying since 16 to go and see a doctor about this, because I'm ready for help. I don't have the courage. I'm too shy and scared. After readng on the internet, I think I need surgery and HRT. I hate myself. I don't feel (or look very much) like a woman and I'm desperately lonely. All I want is a nice boyfriend and to get married, but I've accepted that this won't happen. I'm scared the unbearable loneliness is going to drive me to suicide. I don't know how to start getting help. I can't live like this anymore. Is there anyone there I can talk to in more detail. I can't believe I'm writing this e-mail.

We responded:

Thank you for having the courage to write. You've made the first important step. It's important that you see a specialist and get a proper diagnosis because the treatment could vary depending on what condition you have. You are actually quite lucky in S_______ because there is a well-organised medical system for investigating/treating intersex conditions. Would you like me to link you up with one of the doctors? You mustn't be scared because these doctors are seeing lots of people like you.

Also, if you came to one of our group meetings and met other women you'd see that you are not alone by any means and that lots of girls/women, like you, have been isolated and thinking they are the only one. You just have to steel yourself to making that step, and you will immediately feel different, get a sense of belonging, even after just one meeting. Then a bit further on, having probably pinned down your diagnosis and got the right treatment, you'll look back "from the other side" and wonder why you wasted so much time in the shadows. If you don't take that proactive step, you'll always be lonely and afraid. We have a agroup meeting coming up in London on Sat 30 June. Why don't you come along?

You didn't actually say in your email what your symptoms are.

1) What makes you think you have one of the conditions we support? Do you have any idea, from what you've read, as to exactly which condition you might have?

2) When you say you think you need surgery and HRT, what surgery do you mean - a) removal of gonads, b) surgery on external genitalia or c) surgery to lengthen the vagina?

3) How do you know your parents are aware that you have a condition if they have never spoken about it?

Just trying to help you sort out your situation and so that I have a few details if I need to refer you to a doctor who might help.

She replied:

Thanks for the reply. I feel SLIGHTLY less scared now. I'm still scared to discuss this, but I'd really like to be put in contact with a doctor in S_______ who would be really sensitive and understanding. This e-mail address can be given. It's not my main one, but I'll keep checking it. Preferably a doctor who I could see soon. I wouldn't mind travelling to D_____, S_______ and E________ or G______. I really need help :( There's no way I could ever go to a meeting. I don't socialize at all, much less in a setting like that :( Maybe things can
change in the future.

We responded:

Hi again,

Yes, I can try and find you a nice medic in S_______ but first could you answer the questions in my previous email so I can pass on a brief summary of your situation (in order to target a doctor in the most appropriate specialty or specialties).

You are not as unique ("I don't socialize at all, much less in a setting like that...") as you imagine. We have many members like this who have come to a meeting in great fear and trepidation, but find that it changes their lives completely. One member got to the meeting venue then took refuge for a long time in the Ladies; and when she was eventually coaxed out she sat in tears for the whole meeting. Yet by the end of the weekend she was smiling and composed. And the next year she came back mainly to see the friends she'd made. What people don't appreciate before they come to a meeting is that they will find themselves in a room where everyone else has a very similar experience to themselves, so they are freed from any need to be fearful, secretive, embarrassed etc.

To make her feel less alone, we explained that the same evening as we received her enquiry we'd had one from another person expressing similar feelings ("I have spent most of my life in shame and fear....") and that she was number 762 on our enquiry list.

After a couple of weeks she replied:

It's taken a long time to even get the courage to reply. This is something I can't even think about let alone type about. I'm the most conservative, prudish person in the world, so to even type the words below is a shock to myself. I'm also so paranoid that the internet might not be secure and someone else could read these messages. I'm so scared. I know I need to see a doctor asap because within the next 2 months I'm moving to a new place and I know I'll have lost my chance to be helped. Here are the answers to the questions:

I've always known my genitals were different to other girls. I didn't think anything was actually that wrong but when I started to do research on the internet I found that a clitoris over about 1cm was considered to indicate an intersex condition and I completely panicked. Mine is considerably larger. Within the last few years, I've seen vagina photos and diagrams and I can't find any similarities at all between mine and those. The structure is COMPLETELY different, not just the clitoris. I know they always say that every woman is
different, but I'm really completely different.

I think I need surgery to minimise my clitoris and make my external genitals look like I'm actually a woman. I also want some sort of treatment to make my body think it's a woman. I don't have breasts. I've only recently become a AA cup because I've been putting on weight uncontrollably for the last few months. My voice has always been incredibly deep, but over the last decade I've trained it so I now speak with a horrible high pitch speak and I can't seem to change it. I menstruate as normal, but over the last few years it's become lighter and lighter each month and is now almost gone. A year ago I was diagnosed with ovarian cysts, which they found through an ultrasound. Because I'm a virgin, I've never had an internal exam. No one has ever seen what I look like.

When I was younger, my mom would often say things to me like, "when you were a baby, we thought you were a boy, so we named you ______ at first". All of the pictures of me until I'm about 5 have me dressed in boys clothes with a boys haircut. She stopped saying this when I was about 8 and has never mentioned it since. I'm sure she hopes I've forgotten. So now I don't know what happened to me as a baby and whether I've had some sort of surgery or not. My parents never spoke about it or offered me help. Now I'm paranoid that it's some sort of conspiracy and doctors I see for sore throats somehow have it written on their papers about me as a baby. I'm so scared. Thanks for any help you can offer.

We responded:

Thanks for this. I can understand that it's difficult to face up to, and to express to someone else. I'll send your details to one of the main doctors in S_______ who deals with these issues and give him your email address.

It sounds from what you've said that you might possibly have Congenital Adrenal Hyperplasia (CAH) which is a condition in which a genetic (XX) female becomes masculinised due to a problem with the adrenal glands producing too much male hormone whilst in the womb. But this is just a guess. The specialist will do tests and reach a careful diagnosis.

We sent a summary of her situation, without giving her name, to a lead clinician in her area. He found a female gynaecologist who we linked up to her.

She responded:

Thank you. I will indeed let you know how it goes. I thought I might have CAH but I wasn't sure. I'm looking so forward to finally dealing with this. This has been the darkest secret of my life for the last 20 years and I want to let it go now. Thank you.

1-2 weeks later we asked if she'd been able to arrange a consultation and asked:

I wanted to ask, how would you feel if I put your story on our Personal Stories page (I can construct it from your emails), maybe under a pseudonym and removing any potentially identifying references like where you live etc? It might actually help you a bit, emotionally, to kind of toss it out there, in a cathartic way. This is often what people find.

She responded:

You are incredibly kind, and I'm so thankful to have you. As long as my story is annonymised, I don't mind it being posted.

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