I don't know what to do. I have been trying to get my PCOS treated for the last couple of years- and have learnt a lot more about it recently thanks to the internet of course- but I am really struggling with specialists. I seem to see a different doc each time which doesn't help matters- although it's good if you see someone you really hate! you only have to see them once!
Basically they only believe in treating symptoms, not the disease. I have been told this in so many words, particularly by the last doctor I saw. "We can only treat symptoms, not the disease, because we do not know what causes the disease." "We cannot treat symptoms until they are there"-i.e they couldn't help prevent obesity, only tell you to lose weight when you develop it. AARGH! I had to waste my entire appointment trying to prevent him from taking me off all my medication - which had taken me so long to acquire in the first place- to be replaced with nothing! Yeah, that'll help. Luckily the dude in charge didn't agree. I told him that although my excess hair had got no better, it had got no worse, and that this to my mind was an improvement. The thing is, I think it has got very very slightly worse, even since going on dianette, 18 months ago. They will not let me try anything new.
The problem is that my androgens are low, so they seem to think there is nothing more they can do, but this is not true. Anti-androgens will reduce the amount of hormone binding to the androgen receptor, for instance. In defense of metformin, I said it seemed to help normalise hormones somewhat in many women and restore ovulation-and of course he said why would you want to ovulate if you are not trying to get pregnant- why indeed! Also that it wasn't about normalising hormones- this was not the aim of the treatment- or something along those lines. It was one of those 'what?' moments.
In summary, there seems to be no real will to try anything, to experiment, to treat this thing holistically. I accept there are some serious limitations with what can be achieved, but there seems to be no will there. I have only ever met one doctor so far that even 'believes' in metformin (which is how I eventually got it, not that it is really helping much.) The thing is, it looks like I am oging to have to lie, in order to continue getting any treatment at all. And this is far from ideal. Yes, I can pretend my hirsutism is diminishing, so I can continue getting treated, continue trying with the drugs I want, regardless of whether or not it is true.
But exactly how do you get better treatment? Does anyone have any ideas? Aren't there limitations on who you can see privately because your doctor has to refer you- or is that not the case? Not that that is likely to be anything more than a waste of money. I have come to the conclusion that everything depends on me. Unfortunately, I still need medication, and my blood tests done and so on and I cannot do this alone.
I can understand your sense of frustration! I'm very confused about what direction my treatment might take in the future. Earlier this year I saw a gynaecologist in Sheffield, after a couple of years of badgering my unhelpful GP. The specialist told me that Dianette was the only treatment option. I mention Dianette and was told that its use was highly experimental and not recommended!
I've recently moved from Sheffield to live in Hull. I joined a new GP practice and saw a doctor as part of the routine of signing up to the practice. I explained my diagnosis and the history of my treatment so far. I was told that Dianette is dangerous and that I should not stay on it for more than a few months, totally contradicting the advice of the specialist in Sheffield. She was also amazed that I had only been referred to a gynaecologist and not an endocrinologist too. How can Dianette be the safe and only option in Sheffield and dangerous in Hull? How can seeing an endocrinologist be routine in Hull but not in Sheffield?
It seems to me that knowledge about PCOS and the treatment response to it varies considerably across the UK. The result? Women with PCOS lose out and become confused and frustrated by the NHS.
Ever since I was diagnosed with PCOS I have been ttc so have (luckily) not yet had the experience of how much help I will get from my consultant and GP. Very little I expect. In this country particularly no one seems to want to progress. But Metformin and Dianette have worked for me in different ways, without Met I do not ovulate and when I am no longer ttc I am sure I will be taken off the Met, if I am no longer ovulating then this causes a hormone imbalance in itself.
The difference of opinion between GPs re Dianette makes me laugh. I first took Dianette (before my PCOS diagnosis) to help with my skin about 8 years ago. So it is hardly new. I think I was on it for about 3 years before it was recommended I come off it. A friend of mine has been on it for 7 years, she is 41, and her GP has never mentioned any dangerous side to it.
I have been sent to a gynea through private medical treatment. My doctor no longer knows what to do with me as all my blood tests showed as bieing normal yet I was not ovulating. I have just finished a progesterone challenge hich induced a short and light period and my ovaries have now redeveloped their cysts - they were sent away by dianette but have reappeared since I was taken off it. So what is the answer for us all? since I am not ttc either! I just want to know that I will have a choice when I want to try.
I got told there was no cure! The first consultant I saw basically said "There's no cure, we can't do anything, you'll never have kids but come back if in the future you want one"! I was 18 at the time!
It happens everywhere. I think the UK is a **** place to have PCOS. Doctors don't seem to give a ****ing **** about the illness. All they care about is profits it seems. ****ing NHS.
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Will shine on you and all those who knew-that we could make it.
Carla is right there is no "CURE" for PCOS but you can control the disease with the right medication or diet. Doctors give you meds to help you control the symptoms, but there is no known cure (YET).
Most doctors dont know about PCOS, they should as its reported that 1 in 5 women in the UK have it, you really need to make sure you get the correct treatment it is so important as untreated it can cause problems in later life. So dont be fobbed off by docs that refuse to get with the times, ask for a referal to another doctor, or go to your appointment armed with info from the internet etc.
If you still find that you are banging your head against a door why not try herbal remedies, there are some great success stories on the Alternative remedies board.
good luck,
Love Lynn x
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we have given up trying for a baby, after years of putting our life on hold and focusing on nothing else we now have our lives back and we are happy again.
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Treatment advice needed 
So what is the answer for us all? since I am not ttc either! I just want to know that I will have a choice when I want to try.
hi ladies 
