Polycystic ovaries without the syndrome

[Chasingtherainbow100]

Im 32 and my husband is 31. Been TTC since March 2020. Got to 7 weeks in August 2020 before miscarrying.

In November 2020 I had a chemical. (Period came on day 32 after seeing positive a few days before)

In April 2021 I had another chemical and the cycle was 31 days after seeing a positive a few days before. However in May I thought I had another positive but I came on that day which makes me think the April one was just an indent line too. I didn’t use expensive tests in that one as I was saving them for after my period was late.

This could mean I’ve not seen a positive since November 2020 but the NHS have us down as April being our last pregnancy. They won’t offer us IVF because they say I can get pregnant.

I then had my HyCoSy in June and was told I have polycystic ovaries (20+ on each side). I’m pretty sure I ovulate regularly. Ever since HyCoSy I’ve had very regular cycles at 28 days.

Since TTC they’ve been between 31-38 days so I’ve been thinking something has been happening and not sticking every month. Im now worried that that’s it and as my cycles are back to 28 days I won’t ever see a positive again as it’s not even pretending to stick anymore.

I cannot take another negative. Today was day 14 but I don’t want to try anymore because I can’t deal with seeing another negative and being in the two week wait just thinking every twinge must mean I’m pregnant.

Does anyone else have polycystic ovaries but regular cycles and likely not the syndrome? The consultant said I don’t have the syndrome which means we cant be given anything and all we can do is keep trying. It just feels hopeless because I cant keep trying but there is nothing anyone can do. There is nothing on the internet about having polycystic ovaries without the syndrome. Has anyone been successful after a similar situation?

Hi, I have polycystic ovaries without the syndrome. My cycles are regular.
My circumstances are different to yours though. We had to have IVF because my husband didn’t have any sperm in his sample (doesn’t have vas deferens) and he had to have surgical sperm removal; there was no way we could get pregnant naturally.
I’m sorry to hear about your miscarriage and chemicals 😢

Hi @Chasingtherainbow100

To meet the diagnostic criteria for PCOS you generally need 2 of the following:

-Clinical Hyperandrogenism or Biochemical Hyperandrogenism (Elevated Total/Free Testosterone)
-Oligomenorrhea (Less Than 6-9 Menses per Year) or Oligo-Ovulation
-Polycystic Ovaries on Ultrasound (>= 12 Antral Follicles in One Ovary or Ovarian Volume >= 10 cm3)

I have a very high AFC, with 17 follicles on each ovary so 34 in total, but regular cycles and no issues with hormones. So I don't have PCOS. The good news is if you did need IVF you should get a good number of blasts, although people with a high AFC are at risk of ovarian hyperstimulation syndrome, so you'll need to be on low dose stims. I personally didn't want to wait any longer so paid privately for IVF after a year of ttc. Have you had recurrent miscarriage investigations?

hi @Chasingtherainbow100 I have the exact same thing. Polycystic "looking" ovaries, 22 follicles on each side, but none of the side affects/symptoms (normal weight etc). Been ttc for a year, 1 miscarriage at easter and just started private ivf a couple of days ago. The dr seemed to suggest that unless I had the full syndrome then it shouldn't really cause any issues for ttc (as I ovulate every month etc) so it's not really clear to me what the problem is if one has polycystic "looking" ovaries. As you say there's nothing on the internet about it!

Same here. I was told at my hycosy that one side looked polysystic . No explanation as to what this meant for ttc as like you none of syndrome symptoms..except infertility. I will ask at my consultant appointment

It's thought that polycystic ovaries are a normal variation. Up to 30% of women have them with most none the wiser.

I've got PCO and two kids. The oldest is 2.5 and was ivf. Nothing wrong with either of this was ever found. We then conceived ds in an unplanned pregnancy when dd was about 16 months. The irony is not lost on me...

Hi @Chasingtherainbow100 we're in a similar boat to you guys - same age, trying since March 2020. When we started TTC I had full blown PCOS with long cycles and ridiculous hormones, but eventually managed to regulate them (now 30 days) and not getting the same symptoms so whilst PCOS has improved, we're still struggling with conceiving.

I managed to conceive in June this year but had a miscarriage at 6.5 weeks (so sorry to hear about yours and your chemicals too 😔) and since then I've had a couple of cycles where I've felt like I've conceived, had lots of symptoms similar to when I was pregnant and high RHR on Fitbit, but then no BFP. This month we didn't DTD in my fertile window as I was ill, and I haven't had ANY of those symptoms and my RHR has stayed low.

Sorry this is long - what I'm trying to say is I suspect that with PCO there is something that can prevent implantation from happening/succeeding. I have no medical evidence to back this up but I just feel like with me, an egg is getting fertilised but then not burrowing in! All my symptoms tend to drop off around 12/13 DPO. I guess it could also be that I'm ovulating but not releasing a good quality egg so maybe my body rejects it.

It's been interesting reading that others have pursued a quicker path to IVF. It's not something I've really thought about as, like you said, our fertility consultant has said we shouldn't have a problem conceiving again (and yet...!)

I understand how frustrating and heartbreaking this is on a monthly basis so just wanted to send love and understanding. It's so tough ☹️

Ps. Have you had a blood panel done - if so were all your hormones in a normal range? Including thyroid etc?

You could also do a private test online to check for deficiencies in things like B12 / folate or even for inflammation levels

I've also seen people on Instagram get tested for things like BV as infections can also cause fertility issues!

@Blueron123 thanks for your message. I hope you don't mind me asking but was the IVF successful? Would love to know the chances of conceiving with IVF with PCO without the S.

@Gardenlady543 thanks for the info here. It looks like we will have to go private if we want to get any IVF. I had blood tests for recurrent miscarriage investigations in July - we have been waiting for the results and we actually get them on Monday (seems a very long wait for blood test results). The consultant said he was testing for antiphospholipid and I also think some form of lupus. He said if we get a positive result for that then it doesn't really mean anything and we would have to get another test to prove it wasn't a fluke. He said if it comes back ok all he can say is go away and keep trying. I guess we will see what he says on Monday but he came across very dismissive before. We got referred to him in January and this is only the second time we've managed to speak to him as the HyCoSy took 6 months to get an appointment. Perhaps private will be the way forward.

@coffee1988 interesting to know you've also been told the same thing. Sorry to hear about your miscarriage and hoping your IVF all goes well and you get good news. I think we will need to go private sooner rather than later.

@bmachine I find it odd there is really no information - I hope your consultant appointment goes well and let the thread know if you find anything out!

@physicskate thanks so much for your message. This gives me hope!

@bfnancy this does sounds similar. Really sorry to hear about your miscarriage too.

I really felt so many cycles something was happening (like sore boobs and just feeling different). Then the symptoms suddenly stop and I know I will get a negative. My two chemicals and miscarriage I had really sore boobs. One extra symptom I got for the 7 week was implantation bleed on the day my period was due. I have not had that since so I almost feel my body is getting better each month at rejecting.

I didn't know about RHR. I actually have noticed my heartrate sometimes at night when I'm lying down since TTC, but perhaps this is just the anxiety that I seem to be developing.

I really feel my body is rejecting something most months. I've had blood tests on the NHS for like rubella, thyroid etc and all my hormones are in normal range. I'm sure I can get more comprehensive ones private though. The last thing I am getting tested for on the NHS is antiphospholipid syndrome. Famous last words but I don't think I have it - but I find out on Monday. This would help explain the miscarriages but I don't think it's something that is pleasant to have. I've been waiting for the results since July! He said at my last appointment that if it comes back ok he will just say to go away and keep trying and if it comes back not ok I will have to have a repeat test to double-check the result. I think we will go private in October/November just to ask what kinds of extra tests can be done in terms of bloods and immune testing.

@Chasingtherainbow100 no I don’t mind you asking. Unfortunately no but that doesn’t mean it won’t work for you. I’m just about to start my fourth cycle. I’ve had 5 transfers altogether and had a miscarriage and two chemicals. My consultant told me a few weeks ago that she really thinks it’s going to happen for me and doesn’t think I should stop trying. I hope she’s right 🤞🏼.
I’m nearly 38 so I’m worried about my egg quality but she said my eggs looked great after my last egg collection. I was on a very low dose so didn’t have many eggs collected (unlike my first two rounds with the NHS where I was on a higher dose and had lots of follicles), I had two embryos transferred but had a chemical.
I had two rounds with the NHS and when I was discharged the consultant told me that with polycystic ovaries the environment can affect the quality of the eggs. I’ve started taking inofolic alpha because it can reduce insulin resistance and help egg quality x

@Chasingtherainbow100 how long have you been trying to conceive? I thought after a year of trying, your doctor had to refer you for IVF - you shouldn’t have to go private unless your health board doesn’t offer a free cycle x

Hi @Chasingtherainbow100 how are you getting on?

I've been meaning to message here, I watched an online Fertility Network webinar about PCOS and there were some useful takeaways, I'd recommend having a watch when you have a spare 60 mins:

If you are short on time, at about the 49 minute mark they talk about other things you can do with PCOS if you have regular cycles but still not able to conceive xx

@bfnancy Thanks for sharing :) will look more into nutritional testing and microbiome. How are things with you?

Doing 'ok' thanks - so my levels for anti-cardiolipin abs were elevated on two blood tests 3 months apart so I need to see a haematologist for suspected antiphospholid - not sure if I will get to see them this year as I was referred over a month ago! I'm not sure how helpful they will be regarding anything fertility related especially as this is for miscarriage and I don't seem to be even getting pregnant anymore. They were also only slightly elevated so I am unsure if this is the cause.

I am now seeing an acupuncturist, had 3 sessions. I thought I was pregnant this month as I have been having 28 day cycles consistently since HyCoSy in June. This month it was 31 days and I had sore boobs but it was BFN. AF also only lasted 1.5 days! My shortest period ever. I had a progesterone test too this month and that was 40, so I definitely ovulated. So I will temp this next month to see when I will ovulate (I had stopped temping as it was always day 14/15 and was running like clock-work). Not sure why the period has suddenly changed!

Have started to look up going private but even that is a wait - no appointments until middle of Jan! Another thing... my acupuncturist said my FSH was too high - it was 3.1, which is fine for NHS parameters, but she said for private they like it to be under 2.5. I had it redone and it came back 1.83 - so that's not the cause! Desperate for some answers!!