Dee's Story

[Received July 2004]

My name is Dee ______, 23 yrs old, and I am affected by Androgen Insensitivity Syndrome. Although I've spoken to many doctors and gynaecologists, somehow I still feel singled out and would like to meet similar people with the condition.

I am probably one of the lucky ones as I found out early, although I'm not too sure as I can't really compare my situation to others! I was diagnosed at the age of 5. I had already had two gonadal hernias, one at age 2 and one at age 4. I had my "hysterectomy"? done at the age of 9. All I was told at the time was that I was unique and that they needed to keep an eye on me and that I wouldn't be able to have children. Also that there were only 6 known cases that were similar in the UK! I then started oestrogen, age 11, from half a mg a day to now 3mg a day. I have been seeing Professor Anne Garden, a gynaecologist, since the age 11 and have seen her twice a year since at the Liverpool's Women's Hospital! I started using the six sizes of [vaginal] dilators at age 14-16.

I didn't even know it had a name and I was fine with it up to the age of 18. Then I started to get very upset and emotional, especially around those who were pregnant! And when a relationship ended I always felt physically inadequate, which I blamed the condition for and still do!

Last year I went for a routine blood test at my GP's and was told to go back quickly as my test results were a bit alarming. They only wanted to tell me that my body wasn't producing natural oestrogen and it would seem my ovaries weren't working (do they bother to read the records?). After a conversation with my GP, and the locum getting a ticking off, I noticed on the screen that they had me down as 'Testicular Feminization'. I walked away feeling confused and went on the Internet, searched under it ['Testicular Feminization'], and it brought up 'CAIS'. Even though all the information on there was information that I had learned through Prof. Garden I suddenly felt angry that there were a lot of people out there with my condition, and since then I've hungered for information on it! I felt as if I was learning about myself again for the first time, reading people's emotions and hearing about tests undergone! side effects etc. For example, everyone else has seemed to have seen a gynaecologist and an endocrinologist. I haven't, and when I asked my gynaecologist why she said I didn't need one!

I have, having read through similar cases, asked Prof. Garden for testosterone treatment in the hope of balancing my emotional and aggressive sides, and hopefully giving me a libido as this is one area I suffer in greatly. I had a problem in that I never took my oestrogen regularly, as I felt that was the one thing that I could control in an act of defiance towards my condition, but I found it made me emotionally rash and very mixed up. I asked for testosterone last year but Prof. Garden said that I could try it [only] if I take my [oestrogen] tablets without fail for nine months. Well I've lived up to my part of the bargain! I actually see Prof. Garden on Monday and am taking my partner for the first time so he can ask any questions he might want the answer to. I am also starting my testosterone treatment on Prof. Garden's approval. So fingers crossed all goes well!

I'm excited at the prospect of meeting other people as I still have lots of questions that I feel my closest family, partner and loved ones just simply wouldn't understand or would find difficult to understand. All the above is why I've decided to make contact!

We gave her information about joining the group and mentioned the possibility that testosterone might not have any effect on her libido since, if she has the complete form of AIS, she would be completely insensitive to male hormones but that it was worth "having a go" to see what happens (since there might possibly be receptors in the brain that are responsive in CAIS women). We also asked her what she thought of the term 'testicular feminisation' and told her about the Reed codes (codes for various diagnoses like testicular feminisation and androgen insensitivity syndrome that are used in GPs' computer-based records) and explained how she could ask her GP to change the code so that 'androgen insensitivity syndrome' would display on-screen instead. She replied:

I never before considered the fact that the testosterone would maybe not cure my libido. That's something I must consider before Monday. If I decide upon taking it then I will let you know of the outcome. It will be in the form of a slow releasing capsule over 6 months, something I'm very nervous about, as once it's in I have to let it run its course and not be able to decide to not take it one day when I feel it might not be benefiting me.

The "Reed codes" was interesting to learn about! I must admit when I first saw the phrase 'Testicular Feminization' on my GP's screen I didn't know were to look, what to say or what to do! I felt completely numb and thought "Is that me?" I had all sorts of questions inside that I daren't ask for fear of the answer! The phrase to me meant that when I was born I was male (testicular) and that by undergoing the operation I was being feminized. I felt like a freak. I cried for about 2 weeks. It was awful for my parents, they just couldn't console me. I even asked my Dad if he'd lied to me and if I should have been a boy. I even considered telling my Mum I wanted nothing to do with her for putting me in this situation, i.e .by giving birth to me! It might sound a bit dramatic but at the age 22, finding out that, I was distraught. I hate that phrase! But I'm learning to deal with it (or just ignore it)!

She attended our Spring 2005 meeting and emailed afterwards:

Would just like to say that I found the weekend extremly valuable. I don't really know what I was hoping to achieve by attending as I wasn't sure what I would find and I was very nervous in the run up to the meeting. I always felt alone in the world I know it sounds a bit corny and sad but it's the only way I can describe it, at the meeting I suddenly felt "normal" and "accepted", a feeling I thought I knew but actually didn't.

My only regret is that the weekend had to end. I never once thought that I would be so overwhelmed and on several occasions I couldn't speak for fear of crying, crying in an upset way but a happy upset if that makes any sense? I feel like I'm now starting to know who I am and where I need to go to improve matters and I understand things a lot better now. I also feel that and I hope that I have made some true friends at that meeting, people I can finally be myself with.

When I left I went and stayed with my mum who lives in ______ for a few days, as I couldn’t face going home back home straight away, and I cried for two days but this time they were tears of joy and a little frustration but mainly joy! I still have a lot of unanswered questions but I now know that I'm not alone which is important.

I'm disappointed that the next meeting is a year away but I can understand how much time and effort it must take on your behalf! I'm sure I will be going to visit my new found friends very soon and we've been in contact every day since.

I guess what I'm trying to say is Thank You from the bottom of my heart for all your hard work in keeping the group going and Thank You for opening a new chapter in my life. I hope you know what this means to me. Take care of yourself and once again Thank You.

We replied:

That's a really nice message. Thanks so much. It was great having you with us. I can completely understand how you feel. I was that way myself about 10 years ago! I expressed it once as feeling (after each meeting) simultaneously elated, up in the clouds, and yet incredibly grounded, and connected to humanity, in a way I'd never felt before. Would it be OK if I showed your message to others in the newsgroup or as an addition to your web story? It might encourage others, who are in the shadows and fearful of coming to meetings, to take that step.

She responded:

Not a problem. It was meant as it was said! Yes I don’t mind if you use it in anyway that you might feel it may help people! At the end of the day it's awareness that we are trying to achieve and if you feel that my email might help people then that's great as far as I'm concerned. It's helped me so why not let my experience help people. From the people that I spoke to, it was a general feeling that people felt a similar way after their first meeting. And from the people that I spoke to, they all felt [good] effect and benefit from the meetings.