Possible PCOS diagnosis. Previous unexplained infertility doagnosis. Please help.

[OculusReparo]

Hi. Have been lurking on Mumsnet and eventually joined a good few years ago. Have posted here and there with various usernames including this one. Was diagnosed with unexplained infertility a few years ago but just had an had an ultrasound scan and the gynaecologist found multiple cysts on each of my ovaries.

What’s the likelihood of it being PCOS? If I am, how comes it was never detected before? Have had blood tests, an ultrasound and an MRI in the past and nothing has ever cropped up hence the unexplained infertility diagnosis so I am left wondering if it’s possible to suddenly get PCOS or was it that it was there but cysts were too microscopic to see? Not sure if I’m clutching at straws but just confused and wondering whether I should feel happier or not. I mean I am glad now that have a possible reason for the infertility but on the flipside I have been told PCOS isn’t curable.

I have been TTC for 4 years and I’m almost 30 now. I feel sad for all those wasted years that I could have been taking medication or something to help me but was told that I was young, didn’t qualify for IVF, I should stop stressing, I haven’t been trying for long enough and was often told that I didn’t have any symptoms for PCOS so can’t have it or that I did xyz blood tests so therefore can’t have it and yet I had a nagging feeling that I might have because my sister was diagnosed with PCOS from a young age and my gran possibly may have had it.

And now the past few years my weight has suddenly shot up and I’m getting hair growth on my stomach and thighs which I was told was perfectly natural. I thought they were factors of PCOS.

Sorry for this essay. I just feel happy and sad and don’t know what to do. Have been prescribed
1000mg glucophage and was told to come back on the second day of menstrual cycle for some blood tests to check for prolactin etc.

Polycystic ovaries are naturally occurring in up to 30% of women and are generally not indicative of infertility. Pco can be a symptom of pcos which is a much bigger deal as it deals with the entire endocrine system (insulin resistance and metabolism are often associated and can cause infertility).

It's difficult to find research on pco (and not pcos) because it seems to be a normal variant of the condition of ovaries. Additionally, it is only one of the diagnostic criteria for pcos (the others being blood tests and physical symptoms - two of the three gives a diagnosis for pcos).

I've got pco (not pcos). Ttc two and a half years before our round of ivf was successful. Unexplained infertility.

@physicskate Congrats The doc did mention possible PCO and not PCOS. I thought it was the same thing I have had blood tests for prolactin, testosterone etc in the past but this time he’s also testing for TSH and FH. He didn’t go into detail. Do you what those tests are for?

TSH is thyroid stimulating hormone. This should be under 2.5. for ttc (well, the NICE guidelines say for the first trimester and technically you are always in the first trimester during the first two weeks of your cycle. It took me two early miscarriages and lots of research to convince the docs of this!!

FH is presumable FSH? This is follicle stimulating hormone. It should be tested day 2-5 in your cycle. A higher number might mean your body finds it more difficult to ovulate, and thus that you have a lower than expected egg reserve for your age (results are somewhat age dependent obvs!).

Or did you mean LH? One of the diagnostics for pcos is your LH:FSH ratio which should be taken cd 2-5 and show a ratio of more than 2 for a pcos indication.

As you can tell, I love research and facts. I find comfort in them. But I am definitely a lay person!!!

@physicskate Yup, the doc is going to test for LH, FSH, testosterone and prolactin. I’m pretty sure I’ve been tested for those a few times before and that’s why I was shocked by the possible PCO diagnosis because I’ve been told by several docs in the past that I didn’t have PCOS or PCO. But the more research that I’ve done indicates that I may have been unwittingly in the “remission” stage as I was eating healthily and my weight was normal in the past. Had an MRI and ultrasound scan in the past hence the unexplained infertility diagnosis and all blood tests and hormones checked were normal. And I’ve had these blood tests numerous times before from different docs and time and time again it was just “oh you have unexplained infertility because everything checks out and your blood tests result were really good...” and was told by one doc that I just had crippling anxiety and that’s what was causing me to have recurrent miscarriages which didn’t help because then I started blaming myself and my anxiety 🙈

I’m supposed to do blood tests today so will have to see what happens I guess.

Pco can't go into 'remission' - it is a totally normal variant of ovaries and is not linked to infertility. It's not really a 'diagnosis' either - it's more like saying, 'you have blue eyes' instead of brown.

Pcos is a different kettle of fish altogether. Some pcos patients don't actually have polycystic ovaries at all! It's the endocrine disorder that is so tough with it: the associated insulin resistance and weight issues which really mess with fertility.

This can't be helping your anxiety though. Sorry about that. Miscarriages are in no way shape or form your fault. Mostly they are down to a problem with the developing embryo.

It might be an idea to have recurrent miscarriage tests if you've had more than three. Although these tests often show no cause. Immune system issues can cause miscarriage that won't always be tested for.

How long have you been ttc? How many miscarriages and when were they? (If you don't mind me asking).

Had blood tests done on CD2 and it was all fine apart from high prolactin levels. Not sure what do as this has happened before and then when tested again after my period it was all fine. The doc wants to do a CT scan to eliminate other reasons for the high prolactin levels. Have had an MRI in the past and nothing was detected. Not sure if the CT scan is needed?

@physicskate Too many to count. I’ve become numb to it now and I don’t even feel excited after the first 6 weeks because I know that it might lead to just pain if I get my hopes up. Nobody even knows when it happens and I just have to get on with life. Apart from DP and the odd occasion my mum or my sister, I really don’t share it with the wide world, it just opens the door to more pain. I’ve lost count now how many times it has happened. And I choose not to dwell on it because that’s not going to help me at all.

High prolactin levels are not associated with pcos, so that's good news. Fsh and lh levels?

Prolactin is a common ovulation disruptor (it's the hormone for breastfeeding which can stop ovulation). I'm not sure about any association with miscarriage though.

I'm really sorry for all you've been through. I really do hope you get answers though... let me know if I can help at all!!!