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"I felt like I wasn't a proper woman anymore"

Saturday, 22nd November 2008

I'm 29 years old, and was diagnosed with PCOS in December 2007, altough I think I have had this problem for years.  I started my periods at 13 and they were always irregular - my average cycle was 70-80 days!  I can remember Mum mentioning it to our GP, who said that it was normal for girls to have irregular cycles, as the body hasn't settled down at that age.

At age 17 I went on the Pill and my periods became regular.  I took a break of 6 months or so roughly every 2 years, as I didn't want to be on it continously.  During the breaks, my weight flucuated widly and my cycle was erratic (sometimes non-existent) but this was always explained away as being a side effect of coming off the Pill. 

In January 2007 I came off the Pill completely as my blood pressure had risen, so my husband and I decided to use different contraception - my period disappeared.  By June, I still hadn't had a period so I went to the Doctor, who said it was because I had stopped the pill and not to worry.  I went back to the Doctor again in July, August & September as my period had not come back and I noticed that my hair was falling out.  Everytime I washed my hair the plug hole was clogged which was very upsetting - I had really thick, long, shiny hair and I'd always felt it was one of my best features.  The hair on my face was getting thicker, I couldn't lose weight - it was awful. I felt like I was turning into a man and I wouldn't let my husband anywhere near me or undress in front of him.  My GP wasn't interested; she'd asked if I was trying to conceive and when I said no, basically said to go away and come back when I decided to try for a baby!

It was by accident that I ended up seeing the nurse-practioner at my Doctor's surgery - in desperation I'd rung up to make another appointment and the Dr was full.  At this point I'd gained 2 stone since February and my hair loss had made me so paranoid that I had stopped using the hairdryer and even stopped brushing it unless I really had to.  She was wonderful and within 5 minutes of me sitting down in her office, she'd told me that she thought it sounded like PCOS.  I just burst into tears....not at the diagnosis but that finally, someone was taking me seriously and not fobbing me off.  By the end of the appointment, she'd arranged for an ultrasound scan and blood tests. In December I had the scan and was told that my ovaries were completely covered in cysts and PCOS was confirmed.

Since then, I have been backwards and forwards to the gynaecology department at the hospital.  I was finally told that because I am not trying for a baby, they can't do anything for me.  The consultant said that I needed to lose weight.  When I explained that I couldn't seem to lose it, she said I wasn't trying hard enough.  Then, when I produced the diet sheets and exercise plans I'd been following since December 2007, she changed her mind and accused me of being obssessed with my weight and trying to change my natural body shape into something I'm not.....that day was the first time I'd ever met her and the whole appointment lasted 10 minutes.  When I tried to query why she'd said that, she then told me that I was fat, to get used to it as it wasn't her job to help me lose weight.  I felt like I'd been told off, that I was just a fat, balding freak who couldn't have periods and wasn't a proper woman anymore. I cried and cried all the way home.  It still makes me feel upset when I think about what she said.  I don't understand why she thought those things - she didn't give any reasons.  My husband was furious and wanted to complain to the hospital, as I couldn't stop crying when I got home.  I begged him not to as I was scared that if we complained, they would refuse to treat me at all and I didn't know at that point if I would need to go back there.

It's been my nurse-practitioner who has been my life line.  I saw her again and she has suggested prescribing me Orlistat to help with the weight loss and she wants me to start attending a weekly diet clinic and weigh-in at the surgery.  She said that losing weight will be twice as hard for me because of the PCOS, but that by being monitored, it gives me a stronger argument for another referral (to an endocrinologist) if this doesn't work.  I never bother seeing the Dr anymore at the surgery; the nurse has been the only person who has treated me like a human being.

Nobody told me anything about PCOS.  I didn't get any leaflets, any explanations or any help.  Everything I know about the condition I have learned myself; by looking it up and from this website.  I found Verity a few days after I'd been diagnosed, when I was searching for information about PCOS on the internet.  It's been a god-send and the people on the forum have been more helpful and given me far more information than any of the Doctors I've seen; in fact most of the women on the forum probably know more about PCOS than the Doctors I've seen!