My world kind of crashed around me the day a sonographer told me I had cysts on my ovary and would never have a child.
I was 17 and had been complaining to my doctor that my period was never normal. The answer I kept getting was "you will grow into it". My mum mentioned it to her gynaecologist who suspected that I may have a condition that was just starting to be discussed. I was sent off for blood tests and an ultrasound.
I loved kids, wanted to be a mother and could not deal with the sonographer's cruel verdict. I cried. And cried. And cried some more. I finally had the appointment with the gynaecologist who explained that I did have a fertility problem - but I was not infertile! It would just be harder for me, and I was at risk of a multiple pregnancy due to my condition releasing more eggs at the same time. I had what they called Poly-cystic Ovarian Syndrome. I had too many male hormones and little cysts on my ovary - which caused the problems with my period. She could help me by putting me on the pill and seeing how I went. Well Yee-Har! I finally starting to get periods and less facial hair! Six months after starting the pill, I decided to get off it. I ended up with more facial hair and a lack of periods.
When I went back to her, she prescribed the pill and another drug. An anti-androgen drug they used to treat men with testicular cancer with (women with PCOS have high androgen hormones - a male hormone). My mum did not want me to go on this drug - and when we said we were not happy things got nasty. I was told I would end up with cervical cancer if I did not take the drug - and she wrote a letter saying it as well. Well what do you do with that? Get a second opinion. There was a great IVF doctor (remember this was the '90s, and fertility medicine was still being pioneered) that a family member had used. I went and saw him, and lo and behold he had just started to work in the field of PCOS. He was shocked by the letter and that I had been told I would get cancer and that I had been prescribed the anti-androgen medication. He explained that I was only at risk of cancer if I let my lining build up by not having a regular period. As long as I was on some sort of birth control, this would not be a problem, and the birth control I was on had some anti-androgen properties that would help as well. He told me to come back when I wanted to get pregnant, and he would help me.
The next 13 years, I just accepted my PCOS. It was suggested I lose some weight and it would fix the problem (so I got down to 58kg and still no joy mister!). I really did not look much more into it. The internet was now very active, and I decided to do a bit of detective work. I read a paper on PCOS that caught my eye - (please read it) - it changed my life. It discussed the latest finding of PCOS - and what caught my eye was the first page with a title of "Common misconceptions about the polycystic ovary syndrome". Under this heading was a comment on "You will get cancer". I stopped, read it again, and went - that was me. I finally looked at the author, did a few calls and discovered that it was indeed my saviour doctor - who was now a leading expert in the field. I made an appointment and started on my battle against PCOS.
PCOS - what we now know
So back when I was first diagnosed they knew it was a syndrome - made up of a whole lot of different things - but they didn't know why. They also saw these cysts on the ovary. Well, we know a lot more now.