Time to Turn the Tide on PCOS

This week has been really interesting. I can feel a crusade coming on. 

As you know I've had my brushes with poor advice from doctors and medical professionals - check out my post here describing some of (not all of) the experiences I've had which leave A LOT to be desired. 

What's changed this week, was that I realised that I wasn't a one-off, it wasn't a fluke that I'd had bad advice or that it was somehow isolated to my part of the country. I realised that bad advice is widespread, affects women for much longer than a single appointment, causes real concern and actual suffering in some cases. 

In short, it's time we did something about it. 

We've put up with bad advice for too long, dealt with unchecked symptoms on our own for too long and far too many of us have been made to feel silly for seeking help by medical professionals who are ill-informed or just plain oblivious to the problems we face. 

Putting up with it stoically, getting on with the daily grind and doing our best to manage a debilitating condition is what women do, I guess, but it does nothing for our own health. It also does nothing to help the cause of the women who come after us - the next generation, our daughters and granddaughters. Do we really want to see them have to put up with the same stuff that we've coped with? I don't believe so. 

Additionally, we put up with hormone conditions which are uncomfortable, debilitating, tiring, sap our self-esteem, affect our daily lives and how we go about them, but we forget (or avoid thinking about) the long term consequences. Unchecked hormone conditions lead to a prevalence of Type II Diabetes, higher risk of cardio-vascular disease, and a whole range of other conditions which are born of obesity, so by simply putting up or making do, we actually shorten our own lifespan. 

It's not funny, it's not trivial and it's not acceptable. 

For that reason, we have to stop bad service from the medical profession. It's gone on long enough. 

To do this we need evidence. 

I'd like us to start collating incidences of poor advice, diagnosis or service as they happen. I think we need a year's worth of data. For balance, we also need to log the good stuff - where did you get service that was great, or someone was really helpful? We can't get a decent picture if we don't log it all. 

Watch this space for details of how this is going to happen - I'd like us to have a register which we can all add our experiences, but rather than set it up unilaterally, I believe that Verity, the UK PCOS charity are considering something, so I'm waiting for their feedback. Verity would be ideally placed to handle something like this - they have the reach to make the study comprehensive. If I can help them, I will. 

What do you think? Would you like to see a register such as the one I describe? Let me know by replying in the comments section below, and please feel free to share this post - links to facebook, twitter etc are at the bottom left of this page.