A private matter

I was also told not to discuss the treatment with friends or other family members, as this was a private family matter.

By A.M.

I was always one of the tallest kids in my class. From Kindergarten to Year 6, the tallest girl, and one of the tallest kids. With a mother who is 5’ 8” and a father who is 6’, what can you expect! To my surprise, when I commenced Year 7 in 1982, there was a girl taller than I was! BUT, by then, things had already changed. I had already commenced taking those ‘tablets’.

In 1981 (age 11) my mother took me to my local GP in the Hunter Valley of NSW. The doctor commented on my height and told my mother a friend of his at Sydney University treated children with growth problems – particularly girls who were “too tall”. The ‘friend’ of his was a Uni. friend, and now headed up the Dept of Medicine at Sydney Uni. He had a very important position within the Uni. My mother was told this Professor (John Turtle) had lots of experience and success in treating in particular tall girls. The local GP told my mother of another girl in my hometown that had been treated – he was very quick to add though that she had started the treatment too late, and that was the reason she was quite tall. The insinuation was that I’d better see the professor quickly and commence this treatment, or I too might grow to be ‘too tall’.

My mother (and father) had complete trust and faith in this GP and what he had to say, and truly believed that his opinion was to be followed through with, as he was a GP and had experience and knowledge in this area. The GP believed it was NOT normal for a girl of my age to be this tall (around 165cm at age 11).

Prior to commencement of the treatment, I was a happy-go-lucky child, into sports, reasonably attractive with no skin problems. And far from commencing puberty. I was, in my opinion, certainly no ‘giant’.

Upon referral to Professor Turtle, I went through the ‘usual procedures’ – all arm and leg joints X-rayed to ascertain expected growth (calculated to be 5’ 11’ without treatment). I was also examined without clothes on – it was my ‘lucky day’ when they did this, as Professor Turtle was discussing his treatment with Uni students, and the examination room was full of them. They all discussed my situation and recommended treatment as though I was not in the room – I felt humiliated, embarrassed and very demeaned. Prior to me having this examination, I was waiting outside the room with my mother – when I was asked to enter the room, my mother also stood up but was told that I wouldn’t be long and that she didn’t have to come with me. My mother was never asked for permission for me to have this type of examination and she was never told afterwards what happened (by the Professor or me). I was FAR too embarrassed and also presumed my mother knew about this. To my surprise the first time my mother (or father) knew of this type of examination was about 3 years ago when I casually mentioned it to them. My parents stated if they knew they would never have gone ahead with the treatment or further visits to the Professor. We agreed that in this day and age, that type of examination would never occur without parental permission and supervision. On a side note, after my father found out about this, he tried to see the GP who initially referred me to Professor Turtle in Sydney, but this GP refused to see him.

After my initial consultation, all information was gathered, analysed and discussed with my mother – expected height, benefits of the treatment, treatment length (unknown – it would depend how much I grew) NO mention was ever made of any possible side effects or that this treatment was considered experimental. No mention also was EVER made of articles and studies completed on girls who had, previous to me, commenced and/or completed this treatment.

I was not given any option as to whether I was to commence the treatment – my parents had complete faith in the medical fraternity and they really believed that it would be in my best interest to undertake the treatment. It was only a tablet a day after all! I certainly didn’t want to start the treatment – I had done a bit of modeling prior to starting it and felt that being 5’ 11” would really improve my long term prospects in this area – I thought it was rather glamorous to be this height.

I was also told not to discuss the treatment with friends or other family members, as this was a private family matter. The first few months came and went – I got my periods, my breasts started to grow and I became irritable, withdrawn, disobedient, depressed for no apparent reason, angry and sullen. My periods certainly weren’t just a trickle, lots of blood with clots the size of my hands – I was constantly bleeding through clothes and this was VERY embarrassing for me. None of my other friends had their periods. My horror periods would last for 7 days and I had the most excruitating pain imaginable, which lasted for days and days. I also vomited and had the ‘runs constantly’. My mother and the local GP said that this was normal.

As quickly as my breasts started to grow, they stopped – with one being obviously larger than the other. Even to this day, I have this problem. My breasts even now (I am 31) look like those of a 13 year old.

I also started to gain weight – not just ‘puppy fat’ but real fat. Being depressed over the weight, periods and having to take the treatment I took solace in eating more and more. Gone were the days of being slender and modeling. My family all commented on how healthy I looked, but if you were smaller than a size 14 they considered you anorexic. I didn’t loose this weight for another 5 or so years.

I became aware of things and areas that a 12-year-old girl shouldn’t even are thinking about – boys and the like. I was certainly more aware and interested than other girls my age was!

My parents could see no connection between all of this and the treatment – they still felt it was best for me to be on this treatment. I was so frustrated, depressed and non-communicative. My mother was religious about me taking the tablets and would remind me every day, asking if I had taken them yet. One day, I was so sick of life, the treatment and the depression (I didn’t know it was depression then) that I took all of the tablets in one go. My thinking was, if everyone wants me to take the stupid tablets, I’d take them – all at once. I’m sure you can imagine the reaction I received from parents and the hospital – not pleasant to say the least. BUT still no one put the connection together. I won’t dwell on this area, as it’s still not pleasant for my parents. My mother rang Professor Turtle to ask if there would be any reaction or long term affects in my taking all the tablets at once – he said no and recommended that I cease the treatment- his comments were that I was at the projected height (5’ 8”) and it was more than likely that I wouldn’t grow any taller. At no time did he ask or suggest that maybe this was due to the depression I was feeling over taking the medication.

Anyway, the length of my periods and the heavy bleeding and clotting continued (to this day even). The pain was still there and not getting any easier and I could only survive by taking massive amounts of paracetemol every month (recommenced by my Doctor). I continued to visit GPs, advising of my period problems (I also mentioned the treatment that I had been on as a young girl – most had never heard of it). One GP also commented to me that ‘these type of things’ (growth control) are like ‘playing with your genetics’. I knew my period problems weren’t normal and knew of NO other girl that went through what I did every month.

At the age of around 20 I was diagnosed with a large cyst on my ovaries – removed by surgery. The Doctors stated that ‘all looked well in that region after surgery’.

At the age of about 24, I had had my periods for 3 months – I went to 5 GPs trying to get an answer – one even suggested that I was miscarrying which just was not possible! The 5th GP suggested that maybe I had endometriosis (I’d never heard of this) and I was referred to a Gynecologist. The gynecologist concluded that it was his opinion that I had endometriosis, and I was booked in for surgery. Three months later (I was not in a private health fund and had to wait) I had the surgery and the Gynecologist commented to me after surgery was that it was the worst case of Endo he had ever seen – it was on over 8 places and ‘caked on’. This was the start of trying many different types of treatment for Endo – I think in a 3 or 4 year period I was on every possible treatment available on the market – without success.

I moved overseas in 1998 but had to come home at the end of 1999 due to my period problems – I just couldn’t cope with it anymore, especially living in a third world country – can you imagine! Prior to coming home I emailed my mother asking her to try and find a Gynecologist who specialised in Endometriosis – she discovered over the internet the Endometrioses Association of NSW and contacted them.

I was referred to Dr Michael Cooper from the Endometriosis Association of NSW in Sydney, was consulted and booked in for surgery in January 2000. Dr Cooper confirmed the endometriosis via surgery and actually his surgery procedure is quite different to the ‘normal surgeon’. I can’t explain his techniques as they are complicated for the ‘non medical’ person! This doctor also advised me (as no other Gynecologist had) that all the treatment (tablets etc) had no real long term lasting effects – in his opinion. I was happy to hear this as I was adamant that I would not go on any more treatments due to the effects I had – acne, mood swings to name a few. A miracle also happened not long after this surgery, I fell pregnant in April 2000! The 4 different Gynecologists I had seen had previously told me that pregnancy would only be possible via IVF or GIFT. I now have a wonderful son, born in February 2001, who is the apple of my eye and a wonderful little treasure.

In the middle of all of this (I think around 1999), my mother came across an article in a newspaper, an article about Tall Girls. She was shocked, appalled and extremely upset to learn about the affects that other women suffered whilst on this treatment and the fact that information was available back in 1981 when I commenced the treatment. Obviously I contacted Tall Girls, in quite a bit of distress and very angry – I felt sorry for the lady that I originally spoke to, as I was very ‘worked up’ to say the least!

After discussions with the crew from Tall Girls, I decided to visit the Medical Centre that had originally referred me to Professor Turtle in Sydney to obtain all letters sent between him and the surgery. One reason for this was to obtain the progress reports that had been sent and to also find out whether I was on EES or DES - my mother couldn’t remember and we could find NO information at her home that would confirm which one.

Published in the Tall Girls Inc. Newsletter in 2000