PCO but not PCOS?

[murmurlade]

Just wondering if anyone has experience of this.

I was sent for an ultrasound after my period took a long time to come back post-pill and having long irregular cycles. It found poly cystic ovaries. But blood tests showed my hormone levels were fairly normal and I don't have the other 'classic' symptoms like acne, unwanted hair or difficulty losing weight.

I know that PCOS tends to be diagnosed with any 2 out of 3 of: irregular periods, poly cystic ovaries on ultrasound, and any of those other classic symptoms.

I don't think I'm ovulating based on OPKs.

Should I consider myself to have PCOS and follow the nutrition/low GI advice etc or would that make little difference to getting ovulation going if there's not much evidence of the metabolic/insulin related hormone problems of classic PCOS? Are there things I can do to improve my chances if I have PCO rather than PCOS, or am I in denial?! 😄

Basically I feel a bit stuck in the middle! And hoping someone has wise words if they have a similar experience xx

I missed out that my doctor was quite vague and didn't diagnose me but is sending me for another scan in 6-8 weeks. Everything takes so long :(

I'm very similar OP. I have 2 DC now if that helps. My periods took over a year to return after the pill when I was 19/20 - totally fobbed off at that time by drs. Then my cycles were long and irregular - 40 days plus. Fast forward to TTC in very early 30s, and while my only symptom was long cycles, no other PCOS symptoms - if anything I'm not very hairy or spotty, and was back then a very healthy weight. Blood tests showed slightly abnormal hormone levels but not off the scale. I didn't have a scan at that stage (guess because of blood tests).

This was all about 13/14 years ago so I don't know how much info there was about diet etc, so I didn't make any changes. The Dr said just carry on having regular sex and see how it goes. The Dr did say that PCOS is a spectrum disorder and so if you don't have many other symptoms it's a good sign from a TTC perspective. No idea how true this is.

Took around 6 cycles to conceive first DC which was probably 9 months in total. 2nd time (4 years ish after TTC first DC) I had the withdrawal bleed from my pill and that was it - pregnant straight away, much to both our shock! I had an early internal scan with DC 2 which showed my ovaries were polycystic.

Since having DC my cycles regulated more - but I'm getting old now so starting to see them become less regular again.

Good luck

I'm afraid I dont have any advice OP but following with interest as came off the pill a year ago and it takes me ages to ovulate each cycle (currently CD37 and nothing). I did conceive in september on CD33 but unfortunately lost the baby at 12 weeks.

Hi @scaredsadandstuck thanks so much for replying (and so happy to hear you have your children!)

That idea of it being a spectrum disorder actually does make me feel a lot more positive. I almost wish I didn't know about having poly cystic ovaries as it only makes you Google... and I know it's very common so not like I think I am some special rarity 😄 as with all these things, just frustrating to feel you don't have much control.

Thanks for sharing your experience of this!

@TheDaydreamBelievers I changed my username but remember you from another post pill thread. I'm so sorry you suffered a MC.

I imagine you and I are reading all the same threads... 'long cycles', 'irregular periods' 'nothing on OPKs'... you feel like you are falling at the first hurdle of just getting that ovulation to happen!

What's your situation with your doctor, have they done blood tests or considered sending you for a scan?

@murmurlade I feel very frustrated about how few "chances" I am getting- came off the pill in march 2020 and between the long cycles and MMC I have had 2 chances to conceive only (did one of those times but as I said, lost it at 12 weeks)

I was scanned 6 weeks after miscarriage and they didnt notice anything unusual. But weren't looking much at ovaries, more at uterus as was still testing positive. GP wont do anything atm as still 1st cycle after MC.

I'm going to focus on eating v clean (PCOS like diet) and losing weight as my BMI is 28. Hopefully that'll help

@TheDaydreamBelievers You have all my sympathies, dealing with the emotional impact at the same time as wishing that your next opportunity would hurry up.

I'll join you in that cleaner eating – it might not solve it but it can only help. I will keep my eyes peeled for you on these threads as realistically the chances are very high that you will get the baby you want so much.

I hope this isn't an upsetting thing to ask but do you find yourself (like me) reading ahead to stages that you might never even get to... clomid, IVF, coming to terms with not being able to have children... It just makes you panic and I'm not normally one to catastrophise. I usually assume everything will just work out, so when things don't, I'm a bit thrown!

Do you have something in mind that you'd like the doctor to investigate next?

@murmurlade absolutely! I'm a person who likes to feel in control (which makes all this so hard) and part of feeling in control is trying to get allllll the info, even for stuff that may never happen.

For the next couple of months I'm going to focus on BMI down then when period finally arrives in getting tested for sticky blood (aka APS). This is not related to ovulation delays, it's because I lost the baby so late in 1st trimester. Done plenty of scare reading about that too!

Are you on any groups for long cycles/delayed ov that youd recommend?

My fertility clinic examines pco patients for endometriosis as it can sometimes cause cysts in the ovaries. If you can ask for an NHS referral otherwise pay for a check at a fertility clinic and ask them to refer you.

Slightly different but I used to have very, very long cycles. I was on and off the pill for about 18 years and each time long cycles. I had tests a few times and was always told PCOS although not 1 cyst was ever found on any scans. Final time I came off the pill same thing happened again with long cycles and again told I wasn't ovulating and it was PCOS although I had no cysts found.

This last time I was planning on TTC in the near future so didn't start the pill again but wasn't actively TTC immediately. After doing some reading I came across something called vitex or Angus catus it's a herbal supplement type thing. I was sceptical but within about 2/3 months my periods were back and regular every 30 days I couldn't believe it and they remained regular until I fell pregnant (planned) about 18 months later. We wernt TTC this whole time, I actually conceived on the first proper month TTC (I also didn't get a positive OPK that month, I've never had a positive ovulation test).

So I don't know whether I ever had PCOS or whether it was issues from the pill or what but I would recommend trying this stuff you can get it on amazon. I'm actually going to start it again now 7 months post natal as I've been feeling I'm due on for weeks but nothing has started so hopefully kick start me again. Oh and just to say I have been pregnant twice actually as 1st time was a long time ago with a previous partner which ended in miscarriage. But I also conceived 1st month TTC for this pregnancy as well. So I obviously do ovulate even if the OPK's/blood tests never suggest I do. So sorry for the ramble but might help trying vitex just to see. You can get it on amazon.

Hi OP, similar story here. After coming off the pill my cycles where irregular, anything from 35 to 70 days, and OPKs did not make any sense. I tried for a year to get pregnant naturally, but nothing happened so I went to the doctor. My bloods were normal too, but the scan showed polycystic ovaries, so I was diagnosed with PCOS as I had two out of three symptoms, like you.

I was a bit sceptical about the diagnosis, for the same reasons. I had a healthy weight, no acne, no excessive hair, no problems with insulin resistance. My doctor said PCOS is for life and also that it is associated with heart problems etc. but she admitted that those health problems with PCOS could just be caused by the insulin resistance/being overweight, so I never worried about that.

My diet was normal/healthy enough and I did not believe that changing it would have effect, so I never tried. I started treatment with Clomid and got pregnant on the first round!

After I had my baby my cycles became regular, and OPKs seem to indicate that I am ovulating. I have been trying to get pregnant with a second child naturally for 18 months now, but so far nothing happened. I have no idea what is going on, why I am not getting pregnant and if I still have polycystic ovaries or not. I guess I should have a scan to find out.

So I don't have all the answers, but in my opinion if you think you are not ovulating you might as well go ahead with ovulation induction treatment. If the only problem is that you are not ovulating, you still have good chances of becoming pregnant!

@TheDaydreamBelievers I was watching the post pill party one which I now realise is yours!

Obviously I want everyone on all these threads to get the positive result we all want! But it is hard to not feel "abnormal" when people talk about ovulation pains and temperatures and CM. If I was in that situation I would absolutely be talking about the same thing so it's not to begrudge anyone – and I would never claim to be in the same boat as people who have struggled for years – but it's just harder to relate when you're watching CD 50 coming round the corner... :)

You sound like you have a good plan. It's odd to hope for AF but hope yours comes soon! 🙏

@GrumpyHoonMain that's something to consider, thanks. I've not really had the symptoms of that but then I've only had 2 periods in about 6 months, one which was barely there. So it's something to put on my list! :)

@Yaty

Slightly different but I used to have very, very long cycles. I was on and off the pill for about 18 years and each time long cycles. I had tests a few times and was always told PCOS although not 1 cyst was ever found on any scans. Final time I came off the pill same thing happened again with long cycles and again told I wasn't ovulating and it was PCOS although I had no cysts found.

This last time I was planning on TTC in the near future so didn't start the pill again but wasn't actively TTC immediately. After doing some reading I came across something called vitex or Angus catus it's a herbal supplement type thing. I was sceptical but within about 2/3 months my periods were back and regular every 30 days I couldn't believe it and they remained regular until I fell pregnant (planned) about 18 months later. We wernt TTC this whole time, I actually conceived on the first proper month TTC (I also didn't get a positive OPK that month, I've never had a positive ovulation test).

So I don't know whether I ever had PCOS or whether it was issues from the pill or what but I would recommend trying this stuff you can get it on amazon. I'm actually going to start it again now 7 months post natal as I've been feeling I'm due on for weeks but nothing has started so hopefully kick start me again. Oh and just to say I have been pregnant twice actually as 1st time was a long time ago with a previous partner which ended in miscarriage. But I also conceived 1st month TTC for this pregnancy as well. So I obviously do ovulate even if the OPK's/blood tests never suggest I do. So sorry for the ramble but might help trying vitex just to see. You can get it on amazon.

Unlikely to be pcos then as it gives you positive opks even when you don’t ovulate. That’s why manufacturers recommend you don’t use opks for pcos. I had 2 years of positive opks and was later told I would never ovulate normally.

@Yaty I was just reading about that this morning weirdly! In my scrolls back to the depths of 2014 mumsnet...

I would like to try something like this but I do get a bit nervous about whether I am being a 'bad patient' (not that I am poorly) but starting something like that while GP is waiting to do another scan. Do you know what I mean? I have a weird science monkey on my shoulder saying "one thing at a time! control the other variables!" But then really if I want to be pregnant do I just throw everything and the kitchen sink at it?!

Just to clarify my last sentence: I mean if not ovulating is the only issue, then with treatment you still have a good chance of becoming pregnant.

Hi OP. I have PCO and none of the other symptoms - I just considered myself to have PCOS and followed the low GI diet (I wasn’t overweight but my eating habits were not the best!). I got pregnant with DC1 naturally and my periods stopped again after that. I was prescribed metformin and got pregnant with DC2 shortly after. I’m now pregnant with a surprise baby - I got pregnant in August despite not having a period since January. In fact, I got caught out because of me thinking that what must’ve been ovulation pains were period pains (or the general random pains I seem to get with PCOS!)

Bottom line - I know so many women with PCOS and they all have children. Some without treatment, some with metformin or clomid and one via IVF. I cried and cried when I was told I had PCOS, I thought that was it for me. I would recommend giving metformin a whirl if your GP thinks it’s appropriate. Good luck!

@commonteal thank you for sharing, this sounds exactly like me.

May I ask how long you were trying for your first baby before your doctor put you on Clomid?

I've read about them not wanting to give you too many cycles of it in your lifetime so I suppose a bit worried that I would be pushing for that too soon if you see what I mean? My doctor may suggest it but you know what it's like you just irrationally pre-empt everything... I'm 30 so they are not in any hurry with me, which is equal parts reassuring and frustrating.

But you need an egg to stand a chance, right?! 😄

@commonteal ah apologies, you said a year. Did they require that before they would put you on clomid it was it sort of, ok well you're not ovulating so let's try it ?

Also - I had a scan after DC2 was born (for unexplained pain) and my ovaries were one big cyst-fest

Haven’t read the thread as in a rush, but yes, I went to GP with irregular periods & ovulation pain IIRC - this was about 15 years ago! - and after a referral, scan, bloods was told I had PCO but not PCOS. Although I am quite hairy! Conceived quickly & have 3 kids, never did anything about it...

@OliverBabish thank you, that is really reassuring. You sound sensible 😄 I'll do as you did and eat like I do have PCOS just in case it helps. My diet is more or less fine but not very mindful!

It's not like I've been trying for a really long time, but I've only had what I would call 1.5 periods in 6/7 months so I might need a kickstart!

[quote murmurlade]@commonteal thank you for sharing, this sounds exactly like me.

May I ask how long you were trying for your first baby before your doctor put you on Clomid?

I've read about them not wanting to give you too many cycles of it in your lifetime so I suppose a bit worried that I would be pushing for that too soon if you see what I mean? My doctor may suggest it but you know what it's like you just irrationally pre-empt everything... I'm 30 so they are not in any hurry with me, which is equal parts reassuring and frustrating.

But you need an egg to stand a chance, right?! 😄[/quote]
Clomid isn’t really considered great for pcos anymore. It doesn’t work effectively if you have IR or male hormones (which most pcos patients will have to an extent). But the NHS does tend to offer it anyway as a step towards IVF referral.

But Clomid can work for pco and it can work really well.

@GrumpyHoonMain thanks Grumpy, yeah I see what you mean. I suppose my uncertainty is which of the two I have really. Blood tests pretty much normal and none of the other symptoms, so I'm not sure whether this is something I can try to 'manage' my way through or something that really won't get going again without something like Clomid.