Verity - sharing the truth about PCOS

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"Trying for a baby is not every PCOS woman's torment"

Wednesday, 16th June 2010

Jennifer shares her story

I was diagnosed with PCOS in 2004 at the age of 24 but at the time I didn't pay much attention to it as my gynaecologist did not give me very much information and didn't seem too concerned. This may sound strange but I have complicated health and had already been to hell and back with endometriosis (finally having it removed in 2002).

It's funny but I was always one of those lucky people who did very little exercise and ate what I wanted (didn't have a big appetite but wasn't healthy) but remained a size 8-10. Then suddenly in 2001 in just 2 months I shot from a size 8 to 18 and put on 4 stone in weight. I was getting constant infections and lived at the doctors - unfortunately I was on my university year out in France.

When I returned to the UK people told me it was what I had eaten in France, that I needed to exercise more and at first I thought they might be right. So I dieted, exercised and nothing happened. My weight didn't change, my shape didn't alter. I became moody and felt like I had PMS - upset for no reason, very irritable, unreasonable... and I began seeing a therapist.

Then I noticed my hair falling out - I would walk across the room and there would literally be a trail of hair behind me, I hated washing my hair because it would just come out in clumps. People would be so kind as well with comments such as "you malt like a dog" - and this was from friends and family. Then I noticed hairs growing between my groin and my belly button, then on my breasts, then the sideburns started...

I was told by everyone I was imagining it. But then my Depo Provera stopped working as well - I was getting spotting and pelvic pain. I saw my gynaecologist again and told him I was concerned my endometriosis was back he told me he thought it sounded more like PCOS and he did an ultrasound and said that there were lots of cysts, I was then sent to an endocrinologist for hormone test to confirm the diagnosis and told I had PCOS. I was put on metformin and told to lose weight.

Now in 2010 I have just been back to my gynaecologist (following another emergency laparoscopy - I have had 8 now at the age of 30) and he told me that the metformin dose I am on is too low to have an effect so he is going to increase it (this has taken 6 years), I am also suffering from chronic thrush (he is going to prescribe something for that), repeated 'chronic' UTIs, and my GP is sending me back to a gastroenterologist to check out whether the diagnosis of crohn's disease from 1999 is correct.

I wish I could find a doctor who knew about (or was interested in) PCOS. I bought a book on it and found that tiredness, constipation, IBS, migraine, anxiety and depression etc are all part of PCOS - I am being treated by separate doctors 'specialists' for each PCOS symptom! I am just starting the low GI diet along with regular exercise to try and reduce the symptoms.

It's sad because I feel I missed out on my 20s by being ill with PCOS and its side effects, and also it is sad that people are still so insensitive to those suffering. Repeatedly telling someone that they are malting like a dog, is a hypochondriac (because of the amount of medication I have to take & symptoms I have), saying that all women have periods and the rest all seem to cope (what I would give for a normal period - bring it on - I don't think most women get IV morphine in A&E for periods), and repeatedly saying I am fat, lazy and need to lose weight has brilliantly led to the development of an eating disorder.

My therapist could not believe how much I hated food - it is the enemy to me but I have to eat in order to take the metformin. I sometimes don't take my medication and go for days without eating this is usually following on from a binge on sweet stuff or followed by a binge on sweet stuff. It also has a huge affect on your social life because when you are a fat hairy monster you do not feel like mixing with people - I identify with the phantom of the opera but instead of a mask I would need an invisibility cloak.

People really need to wise up to the massive impact of PCOS and not just for those trying for a baby as not every woman's torment is fertility.