Note: This is currently a stream of consciousness, and I’ve busted my left index finger. Apologies.
When I was 13, I was diagnosed with PCOS. This basically means I have cysts on my ovaries, and symptoms can present in a variety of ways – from weight fluctuations to hair and acne issues, to the inability to conceive. I was initially diagnosed after an ultrasound following complaints of heavy (14 days) periods, excess hair, and unexplained weight gain. I was put on Dianette, a birth control pill, but eventually came off it as it was ineffective, bar taking a few rows of hair off my temples – the one place I didn’t need it to go!
At 17, I joined my first PCOS support group, and was shocked to realise that the majority of women with PCOS did not know how to tame their symptoms. Some had become obese, others hairy, and several had become severely depressed as a result. Now off Dianette, I sought non-chemical regimes to help me function better. I switched to a Low GI diet (which is more straightforward to follow than you would think thanks to these books), which has helped to make me less sluggish and feel healthier, despite no physical effect.
Feeling frustrated about my hair again, in 2004, I tried Yasmin, which I stayed on for my entire University life. It seemed to do something proactive – hair took longer to grow back once removed, and most of it came back finer and almost unnoticeable. Combined with having to do things for myself – carrying my shopping home every week gave me a great cardiovascular workout, and regular clubbing nights and living on a shoestring certainly helped me along the way – things were on the up. Well, apart from regular and severe bouts of depression, which came unexplained most of the time. I didn’t want to come off Yasmin – which according to books, the internet, and other sufferers was more than likely the cause of it – and it has been shown that St John’ s Wort, the herbal alternative, does not interact well with the pill (Collette Harris, 2003), I decided to steam through it for the greater good.
For a few years I’d been taking Yasmin …. To start with, I saw improvements, but they were mild, and didn’t really improve anything long-term. I was, however, putting on weight with it, and found that I was starting to experience some male-patterned baldness. I stopped the pill a couple of months ago, and still feel as though my hair is thinning. Today I found a slight bald patch on the side of my head….
I made an appointment in March of this year, and saw a doctor who told me she’d refer me to an endocrinologist…
I phone back 2 months later to find that NOTHING WAS DONE. After two weeks of further phonecalls, I got an appointment with another doctor, who ran blood tests and said to come back in two weeks. The receptionist booked me in for 4 weeks…….my next appointment is on the 26th of this month. I hope things move fast, before this becomes too noticeable.
I didn’t give a shit about my weight or mood swings anymore – I just didn’t want to, and didn’t think I could live with, being bald. I went to my appointment on the 26th armed with a list of possible solutions gleaned from my cyst sisters (including Metformin, Spironalactone, Minoxidill, Finasteride, Saw Palmetto), all of which were briefly checked in a medical dictionary and dismissed as being “for men” and “too dangerous to prescribe” and besides, she’d “seen too many people come back disappointed”. I insisted that these had been proven to work for thousands of women across the country, and had done lots of research, and wasn’t it worth a try? An endocrinologist appointment at St George’s was squeezed out of her and I was prescribed contraceptive number 3, but I fear that I – along with most of the women I have spoken to – will have to seek private help. I have around 2/3 of the hair I had at Christmas, and want to catch the cause before it gets noticeable. In the interim, I have begun using Nioxin System 4.
I’ve wanted to publish something about this subject for some time – 1 in 10 women have PCOS, and a sizeable chunk of cases are ignored by doctors, despite the protests of their patients. Most are told to “go and lose some weight” or “come back when you want children”.
I will at least try to track developments here. If this becomes too encumberant i will split it out to another blog.