After having awful acne through my teens I was finally put on the dianette pill at 16. I had always been really hairy as well but never got diagnosed for pcos although I always suspected it. THe pill worked wonders for my acne but not the body hair sadly, but I learnt to manage that and found I could live with it. For the next 10 years I thought i had everything under control and didn’t notice that my hair was falling out at an alarming rate. I just thought everyone lost loads of hair all the time.
It wasn’t until I turned 28 that I noticed a bald patch at the front of my head just behind the hair line and realised my parting was really wide. I googled it and found that I have hair loss, and since then realised that my hairs are getting miniaturised and the folicles will eventually stop growing hair on the top of my head. Yes I am a 30 year old woman that is going bald.
Cue blood tests, crying at the doctors and being put on iron tablets. Two years later and the hair loss hasn’t stopped. I have been to the doctors 10 times and constantly get fobbed off because ‘women rarely go COMPLETELY bald’ as though ‘kinda bald’ is ok. I pushed my doctor for a scan to check for pcos, and sure enough there they were. She never believed me because I am not over weight and don’t have a hairy chest (the only part of me that isn’t hairy!) she reluctantly told me over the phone and offered me no treatment. She just said there is fertility treatment if I ever wanted a baby. I said but I’m going bald, I won’t be able to leave the house with a shiny bald head, and she said I could have counselling.
I thought this was unacceptable so I plucked up the courage to go to the doctors again to try to get treatment but was told the pill was the only treatment. So I paid for a trichologist who just gave me minoxidil which just gave me a beard frankly and didn’t do anything for my hair loss.
So I finally found out last night that I need to be referred to an endocrinologist to have any chance of getting in front of a doctor who knows about pcos. Why don’t gps refer anyone? Because of nhs money? Are they under pressure to only let the most severe cases be referred?
Every other day when I have to wash my hair I get so upset looking at my shiny scalp in the mirror and bald patches, which I cover up with L’Oréal root touch up spray. (Which really helps btw). Every day more hair falls and doesn’t come back, leaving bald areas.
So tomorrow I am going to get an appointment and when I do I am not leaving until I get referred.
And then I am going to complain and write to whoever I can to find out why women with pcos are being ignored.
I recently went off the pill as myself and my husband want to try for a baby next year. But 6 months pill free and I’m a spotty mess, my hairiness is worse and my hair loss is worse. So last week I went back on the pill as I can’t take it. Im now covered in fresh scars from cystic acne. Now I’m scared to come off to try for a baby, and also scared to pass on my awful duff pcos genes.
I read that spironalactone works well for hair loss and can be taken whilst trying to conceive. If anyone has experience of this please let me know.
Sorry for the long post. If anyone would like to chat to me about this please comment. I feel really alone and scared.