PCOS - how were you diagnosed?

[daydreamdaisy]

For various reasons I suspect I have PCOS and am scared about what this means for TTC 

People who have it, how did you get a diagnosis and did it take ages? Did you get effective treatment?

I'm going to my GP next week, but am nervous that it will take ages to get tested/treated if I have it and I should start trying (god knows how) to put money aside to try and go private.

I was diagnosed at 20 after 7years of every other month doctors visits for extremely painful periods. It took seeing one doctor after all that time that took me seriously. I was having time off of work and uni every month because of the pain, it was unbearable.

I was given very little information other than that I would likely need help conceiving later in life.

Now 27 with a 20mo DD. Fell pregnant on the progesterone only pill after being on it for nearly 6 years.

I have found a low carb diet actually managed my symptoms really well now without the need for much else.

I was diagnosed about 10 years ago after having a continuous (6 month) period after having depo provera. They did blood tests first, which showed raised hormones, and then had an internal scan which showed cysts on my ovaries. This was after my first child was born. I had no fertility issues conceiving my 2 other children after being diagnosed, although I appreciate that others do have fertility issues with pcos. I had lots of symptoms of the syndrome though.

To echo the poster above, I have been on a low carb diet (for weightloss) this year and exercised regularly. I went to the doctor about some of my pcos symptoms (hair growth specifically) and they said they needed to redo the diagnosis as it was so long ago- all bloods came back normal (ie no raised testosterone or LH levels) and have effectively told me I no longer have pcos.

I was not diagnosed with PCO until we had started ttc. Like you I always suspected -cycles irregular, painful periods (although that’s due to endometriosis for me). I just knew something wasn’t quite right with my cycles. Trust your instincts and push the doctors. I was quite pushy and it took a couple of visits to the doctor and some exaggerating of how long we have been trying-but I’m so glad we did as was diagnosed with PCO and endo once we arrived at the fertility clinic. I got the diagnoses after about 10 months ttc. We are now on month 15 and I have had a lap for my endo and just started clomid this month. Good luck-it can make it harder -but there are things you can try to help it!

Thank you - I want to be as armed with knowledge as I can before next week! I'll look into low carb as I have a real sugar problem that needs sorting out.

Daydream you’re welcome to have a browse on our blood sugar diet thread if you want help or advice for cutting out sugar

Blood sugar diet thread 12 www.mumsnet.com/Talk/fasting_diet/3322467-blood-sugar-diet-thread-12

I had various stomach problems in my 20s and so had a scan during which the cysts all over both my ovaries were noticed. I had an early scan with DC2 and they were the same. I had never heard of it and was never given any information about managing it etc.
DC1 was a surprise pregnancy although, having been told that my ovaries were in such a state it would be nigh on impossible to conceive naturally, I'd been given the pill more for managing other issues than contraception so didn't worry too much about using additional contraception when I'd had a D&V bug even though I knew it could lessen the effect of the pill. DC2 took a couple of months of trying.

I was diagnosed just before I got married. We both did a fertility check up to rule out any hidden difficulties as we'd wanted to wait a little while yet before TTC, but not if there were fertility problems that meant things would take a long time.

It was such a relief talking to the consultant about erratic and painful periods and some of the other symptoms. Things just finally made sense. I was told that PCOS wouldn't be a bar to conceiving naturally and that the only issue would be that I'd have fewer cycles in a year and therefore fewer chances to fall pregnant, which would make things longer. So no treatment recommended as such and the consultant explained that PCOS is a matter of degree and mine, at that point, wasn't very extensive. The tests done were a series of blood tests and a scan and it all happened on the same day (private hospital).

When we finally turned our minds to TTC three or so years later, I had one of those annual health check ups at work and asked the person doing it if they had any tips on TTC with PCOS. This happened to be her specialist subject outside of corporate check ups and she gave me a booklet on what to eat when TTC with PCOS - essentially, a low GI diet. She also recommended exercise. I seem to recall this was all something to do with insulin. I can't say I've stuck to this religiously but it has helped my symptoms when I have.

I've now been TTC for 15 months - 1 MMC, 1 chemical, 1 ectopic, currently 4 weeks pregnant again and very much crossing my fingers! In all of this, EPU doctors and GP have said what's happened is just very bad luck and they are encouraged that I seem to fall pregnant easily despite PCOS. They've therefore not referred me for tests but I will press for this if this 4th pregnancy also doesn't work out.

Your'e doing the right thing to try and get a measure of it, best of luck and please don't worry that it's the end of natural TTC (easier said than done, I know!).

I had the symptoms since I started my period at 8, but didn’t get diagnosed with pcos until my first ivf cycle in my mid-thirties and by then it was bad. I still have regular periods but need Metformin and Coezyme q-10 and inositol to produce mature eggs.

A relief to hear that people are able to conceive with it. @thenewaveragebear1983 thank you that's just the sort of info I've been looking for! I've realised that all I eat is carbs and sugar but as a vegetarian I need some guidance for a low gi low sugar approach!

Daydream no Worries. There’s a book to with it, or loads of info online, and don’t be put off by the calories as you absolutely don’t need to cut calories unless you specifically want to lose weight

As the previous poster mentioned, CoQ10 may help to support fertility and there is also research that shows PCOS support: onlinelibrary.wiley.com/doi/10.1111/cen.13288/full