Verity - sharing the truth about PCOS

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"I have been back on the clomid madness – with another 7 cycles"

Friday, 13th June 2008

I started my periods just before my 10th birthday. The old chestnut about thinking I was dying, and sat worried until the end of the school day.

I always had very heavy periods that were very irregular. My school nurse used to joke that she knew when I was on, as I would end up in her office poorly with cramps, sickness, and had usually fainted. I was always really skinny, having to wear children’s’ clothing all the way through secondary school as I was just too skinny for adult clothing. I was probably about a size 6 – but before size 6 was a real size!

At 14, I was rushed into hospital in loads of pain. My lower abdomen was sore, and really hard. They rushed me into hospital in an ambulance; with the paramedics sure I was having an ectopic pregnancy... even though I had told them I was still a virgin. It turned out to be a ruptured cyst – they found blood and poison in my tummy during a laparoscopy.

Again, at 15, 17 and 18 I was rushed into hospital for the same reason. I was diagnosed at 15 as having PCOS and endometriosis and told I’d never have children, and to get used to it. They gave me Zolodax injections into my tummy to sort out my periods by stopping them. After a year on zolodax injections every 6 months, they decided that I should go onto the contraceptive pill. I was on the pill from the age of 16, and after 5 years my gp advised me to stop taking the pill – I’d been on microgynon 30. Coming off the pill meant my periods went haywire again. They were all over the place, and very irregular – the longest cycle was 900+ days, but generally seemed to be about 150 -200 days. During this time, my weight went from 7 stone (quite underweight for my height) to at my heaviest, 18 ½ stone.

When I met my ex, we decided that we would try for a child. My GP said he would refer me on to the infertility clinic for investigations. After some tests and another set of ultrasounds, they confirmed the diagnosis of PCOS, and we started on clomid. I had 9 cycles of clomid, and then 4 of gonal f injections both with IUI (intra-uterine insemination) using donor sperm, as my ex had problems with his side too. After all of that, the relationship broke down, partly due to the stresses of fertility treatment – he said he couldn’t cope with it anymore, and the relationship had been breaking down for a long time before I did anything to deal with it.

6 months after splitting up with him, I met my husband on the internet through a chatroom. We agreed to meet in February 2004, and were engaged in March 2004, and set our wedding date for February 2005. During this time, I got my weight down to about 16 ½ stone, as I lost some weight after getting engaged for our wedding. Again, I asked for a referral to the infertility clinic as I knew that it would be unlikely that we would fall pregnant naturally. We stopped using protection when we got married, and went to the clinic for the first time about 6 months after we were married. They advised me to lose 10% of my body weight to give the clomid the very best chance of working. At that point my BMI was 39.71. 

I went away for a year and lost about 4 stone and got my weight down to 12 stone, 4lbs and my BMI to a shade under 30 – so still overweight but not as bad as it had been. My husband was tested too, and found to have a very good count, but with no normal shaped sperm (morphology problem) – but since quitting smoking and taking vitamin C, zinc and a host of multi-vitamins, it has improved to 1% normal morphology – which with a count of 200Million is good enough according to the clinic. They said that it was better than some men have as the whole amount, so we were happy to progress with treatments.

Since then, I have been back on the clomid madness – with another 7 cycles. I tend to respond really well, with my day 21 bloods coming back at 190+ when anything above 30 indicates ovulation. I was suffering really bad side effects from the clomid – being very emotional, having headaches, hot flushes,  nausea, sickness, dizziness, absolutely knackered all the time, night sweats, very hormonal, and just not coping with anything as I was all consumed by the thoughts of trying for a baby, and with the clomid. The clinic then decided that I could have a few cycles of tamoxifen, as it works similarly to clomid but has fewer side effects. I had 3 cycles of tamoxifen and ovulated on all of them but sadly we have never managed to fall pregnant. I am now waiting to start the injections again – it will be gonal F – a follicle stimulating hormone preparation, and then we are going to try that with IUI using my husband’s sperm.

My PCOS symptoms are still all over the place, but the hope of a baby make it all worthwhile. I struggle with my weight – which I carry all on my tummy, but am fortunate enough not to have acne or skin problems, and the excess hair is in places I can manage myself with shaving and waxing – although I have been told that it’s not really an issue, it’s just me being over-sensitive. Without hormonal help in the form of fertility treatments, my periods are still very irregular and very heavy, whether that’s the PCOS or the endometriosis is unsure. I also suffer really badly from depression, and have not worked full time since 2000 due to depression – again whether this is due to my PCOS, or a family tendency to depression, and a combination of factors from my childhood and adolescence is uncertain.

Because of the way I was told when I was younger that I’d never have kids, and to get used to it, and the fact that I was left to manage my own symptoms for so long, makes me very passionate about Verity, and want to ensure that no young lady is given that damning diagnosis with such a callous disregard for their feelings. I’d also like to see more education about managing symptoms and weight before they become an issue. Therefore, I feel that sharing my story to let others know they are not alone is an important part of Verity sharing the truth about PCOS.