12: Continuing treatment- the talking cure

When I was 14, the same consultant who thought nothing of examining my lady bits in front of a group of medical students decided to respond to my mothers concern that I was withdrawn by sending me to a child psychologist. Funnily he never thought once to recommend that I be put in contact with another girl with TS of my age.

I started seeing Kay in the spring of 1987. At first I was going once a week. I trundled off from school on the underground up to the centre of London. After a few months this was increased to three times a week. This proved to be highly disruptive and tiring as I had the journey to and from the clinic in the centre of London. Later this moved to Peckham Rye. Still a long journey!

I would usually communicate with Kay by drawing pictures-often very elaborate. I would discuss how I felt about things such as my family and school and TS. I would discuss my imaginary TS friend who I would draw. It certainly thought me to reflect on things- maybe not always in a good way.

Along with seeing Kay, myself and my family would also see a social worker -way to make me feel like a family issue! Indeed the whole process did make me feel like I was somehow abnormal and needed to alter the person that I was.

While this had a role, it may have been as well to encourage my interests and certainly put me in contact with other girls with TS. Again Kay was not the problem, but the approach taken by my TS clinic was.

I would say Kay helped me to look at some things differently and it was in hindsight a useful experience.

I saw Kay for over four years and my seeing her only ended because I went to university. I have felt on occasions that it might be good to recommence such a relationship but it would need to be a lot less disruptive to my everyday life.

The main good point of going was getting to stay with my grandparents once a week. I formed a strong relationship with them both and look back with such fondness on the evenings I spend with them chatting. This has given me memories which ironically helped me more long term

11: Hormones pt.3- Feeling positive about HRT

As I discussed in a previous post many women with TS have a difficult relationship with HRT.
Many women do not like the effect HRT has on their weight. Some do not like the effect of taking progesterone. Some believe their bodies will look after themselves if left to themselves.

Some women find it frustrating to have to try several different types of HRT before they reach the right dose and find it hard to explain the issues they may have to their GP/Consultant.

I must admit to having severe misgivings. I have been on one brand of HRT them moved to another then back to the brand I was originally on. I have concerns about what the long term implications of taking HRT are.

However I have decided that for me taking HRT can be something which can be a positive action. I want to look after myself and give myself the best opportunity to be healthy when I get old. I have had periods off HRT and felt incredibly run down. I also have a slightly thinning of my hip bones. While it is my consultant that prescribed me HRT, it is my decision to take it. I base my decision on what I know from my experience and medical research. I accept the risks.

It would help if consultants could actually make the time to discuss with women what their concerns are and show the benefits of HRT. Women with TS in my experience are an intelligent bunch and keep themselves informed. We do not take any decision to do with our treatment lightly.

10: Hormones Pt. 2-Jagged little pill

Further to my last post, it is interesting to reflect on my hormone treatment up to my early twenties.

As I said in my earlier post I began taking oestrogen when I was about 13 and 15 when I began taking progesterone. After a certain point I was put on the contraceptive pill (marvelon to be exact)

Now what may you ask was someone who is infertile doing taking 'the pill'?

Well for a kick off, the contraceptive pill is used not just as contraception but also to help women with painful/irregular periods and other gynaecological conditions.

Secondly the contraceptive pill is free whereas ordinary HRT involves paying not just one but TWO prescriptions (something about the oestrogen and progesterone tablets being two separate treatments). An MP tried to alter this in a private bill a few years ago and was unsuccessful.

I did feel somewhat self conscious going to the chemist to get 'the pill'.

However the main issue with the contraceptive pill as a HRT treatment is that is not the most effective treatment. It only gives you 3 weeks hormones in every month, when proper HRT gives you four months.This has significant implications, not least for issues such as preventing osteoporosis.


I had been taken of 'the pill' and placed on HRT in the early 1990's when I agreed to go on a research project run under a private clinic. This was done by the doctor running the project, not my consultant.

Several years later at a TS international a speaker said that HRT was better than the pill. Many of the women were on the pill and promptly got themselves on HRT!

9: Beginning treatment pt.2/Hormones pt. 1- My life as a hothouse plant

After a year on Oxandrolone it had come time for me to start hormone treatment. This was to ensure that I went through puberty like other girls my age. This firstly involved taking oestrogen but later involved taking progesterone to induce periods.

I had very mixed feelings about this. I felt highly uncomfortable about having to take tablets for my body to do something that happened to all my peers naturally. It felt like I was getting my femininity through a tablet. I wondered why I had to be put through the physical horrors of puberty if I was never going to be fertile. It took me some years to fully understand that there was more to it than that.

This was exacerbated by the way that I was treated at the TS clinic. The clinician would examine my breasts and pubic development every time I had an appointment in front of a group of medical students, often making comments such as 'coming along nicely!' I did not feel like a young woman but like a hothouse orchid the clinician was growing. The Clinician did not mean any malicious by their treatment. They were probably unaware just how inappropriate it was.

This had the effect of causing a serious disconnect between how I feel about myself both as a woman and as a sexual being. It has made me feel as though my femininity is something clinical and my sexual organs are a case study , not an integral part of my body and who I am as a person.
It has made me feel as though these parts of me are something which I can take no joy in and give no joy with. It has also made me feel as though any sexual partner would find me lacking as a woman or be repulsed by me.

I am also incredibly protective of my body and rather nervous about showing any part of it.

I am still a virgin at 37 and while there are a number of things which have lead to this, my treatment as a teenager at my TS clinic has not helped. It was only last year that a counsellor began to get me to explore myself as a woman and reclaim these parts of my body for myself. It is going to be a long journey!

I am not the only woman with TS who has been treated this way. I have heard various horror stories along these lines. Many women have serious issues with taking HRT. Some do not even bother. It is clear from the discussions I have had with them that the way they were treated either at time of diagnosis (for those who were later diagnoses) or the way they were treated while going through puberty is at the root of this. Not taking HRT is a way of reasserting some control over their bodies, trying to reclaim some kind of belief in their womanhood.

My current clinician is a very sweet person who is interested in trying to help women with TS overcome the issues they have with sexuality. Maybe looking at the treatment we received when younger.

8: Meeting Lucy

Some months after my diagnosis my mum took myself and my siblings to meet another girl of my age who had TS. We took a long drive out to Lucy's family.

Lucy was very pretty (still is!) and we hit it off very well. We sat in her room and chatted about our lives and families. We went for a walk around the area Lucy lived. Our mums watched a video on TS.

We watched a pirate copy of 'return of the jedi' with our siblings which we enjoyed. My brother made a cheeky comment about it being a pirate video.

Lucy' mum took a photograph of us all on her couch.

It was a very happy day. I was delighted to meet such a sweet person as Lucy. However my parent decided not to keep us in contact as they thought it would be a forced friendship. Again they thought they were doing the right thing and I appreciate it was not an easy call.

It would be several years until I met another woman with TS. This would be when I was at University, when I went to a conference. It would be 13 years until I met Lucy again.

Meanwhile I went through my entire adolescence without any contact with any other girls/teenagers with TS. I felt for years like I was the only person with TS in the entire world. I even created an imaginary friend with TS to get round my loneliness.


I still feel a sense of loss about the years of friendship Lucy and I could have had if we had been in contact through our teenage years and early twenties. and what strength we could have given each other. It would have certainly made me feel less of an outsider. Since Lucy came back into my life almost 13 years ago her friendship has given me so much.


I would advise any parents of girls and adolescents with TS to ensure that their daughters do have regular contact with other girls and teenagers with TS.

7: Starting Treatment

Soon after diagnosis I was placed under another hospital. I was put on Oxandrolone which is a an anabolic steroid.

My Mum trusted me to take the tablets myself. I would cut the tablets every night and take half. This helped me feel in control of the situation. I will discuss my attitude towards taking treatments in a later post.

I ended up becoming incredibly irritable and aggressive. I ended up arguing with other girls in my class and causing arguments. I was not warned that I would become aggressive on Oxandrolone. It was an interesting few months! It was interesting to note that even at this early stage doctors did not see the need to properly inform about the effects of the treatment they prescribed.

I did grow a bit as a result of using Oxandrolone. I had an advantage of having a tall father which means I have reached the respectable height of five foot!

After a year I was taken off Oxandrolone. Part of the reason for this was I was 13 and it had come time to go on Oestrogen...

6: My Life with Turner Syndrome pt. 2- and Gnosis

There were several hospital visits in the months after my diagnosis. I was told that Turners Syndrome would mean that I would always be short. However I knew that there was a more serious issue. I did not as yet know what it was. But I knew that there was a serious problem.

On Ash Wednesday 1984, we had a biology class. We were told about menstruation. Enough of a shock as it was! Something clicked. Somehow this was connected to whatever the unknown problem was. I asked the teacher if my having Turners Syndrome would mean that I would not have periods. She said all girls got periods. I decided to confront my Mum that evening.

When I got home Mum was cooking dinner. She was cutting up onions. I told her 'I learnt about periods at school today'. I waited for her reply.

She turned around with tears in her eyes-' You won't have periods!' I will not forget the distress and pain on her face. It had obviously been a big shock for her.

She started telling me about how TS affects the reproductive system. My reproductive system did not work properly and I would not have children.

Through all of this I remained calm. I understood that things would never be the same but it was not the worst thing that could happen to me.

Somehow I had always known that something had been wrong. Finding out was reassuring. At least I could move forward from this moment.

Ironically at this point of my life I wanted to be a nun so as I saw it I was not losing out!

One of my aunts came into the kitchen and said she would be there for me.

My mum and me sat on the settee with the rest of my family after dinner and she whispered if I understood what it all meant.

At about 7pm my Mum took me to an Ash Wednesday service. We talked in the car a bit more.

I know and appreciate that the day was deeply painful for my Mum. But it has had a major effect on my relationship with my parents that they did not let me know as soon as I was diagnosed and that I was not more involved more with discussions with the doctors. It is not a rational feeling but I do feel less respected by my parents because of this.

When talking to other women with TS it is clear that many have a similar experience of 'the day' that they found. No matter what age we were, it was not an easy day.

But what I will say to any parent is that it is better to inform their daughter as soon as possible and to get her involved with discussions earlier rather than later. It will help her feel as in control of the situation as she can and allow her to move forward with her life. She will also know how much you respect her.