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

@OliverBabish and congratulations! Can't believe I missed that bit! 🎉

[quote murmurlade]@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. [/quote]
I know it’s difficult but honestly in this situation you just have to trust your consultants and doctors. PCOS is easy to spot now and has a specific hormone profile. Consider yourself lucky you don’t have it - it took me 10 years of ttc and increasingly aggressive treatments to ovulate. It took 2 cycles for me to have DS which I was told was really lucky as it usually takes 4 for pcos.

PCO is a varient of normal ovarian function so hopefully you have a good chance of pregnancy after some clomid or maybe another procedure. Just make sure to rule out anything more serious that pco first and if you can then you’re golden.

@GrumpyHoonMain you're right of course! And thanks for the words of wisdom, it really is appreciated when you are feeling a bit despondent. I'm glad you have your son!

[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]
First of all, I should tell you that my treatment was in a different (European) country, because I was living there at the time, so I don't know how the NHS handles things and how much it funds.

I read that I had to try for a year, before I could go to the GP, so that is what I did. The GP needed some convincing (he knew nothing about fertility), but eventually did refer me to the fertility clinic. The gynecologist there was very understanding and confirmed straight away that my cycles weren't right. She then did a scan and there were lots of cysts, so she diagnosed me based on those two things.

So then she suggested to first try Clomid. She said I had to forget about the previous year of trying (because yes, you need an egg for it to count!) and we were going to start over now. We would try Clomid for 6 months. If nothing happened I would have a HSG and if no issues we would continue with Clomid for another 6 months, as to mimic a year of 'normal' trying. If by then nothing had happened we would discuss other options.

So Clomid worked like a dream for me. I had only 50mg, no side effects, and I got one perfectly good follicle (and two smaller ones that luckily did not grow further) that turned into my now toddler!

They did say at the clinic that I was very lucky, because it does not work that well or quickly for everybody, but they also said that with PCOS it is perfectly possible to become pregnant. It takes a bit more perseverance though.

@commonteal Thanks for explaining! I'm glad you were so lucky with it, though that year trying beforehand must have been very frustrating. That makes so much sense. Thank you! X

@GrumpyHoonMain What you are saying about PCOS vs PCO makes total sense to me! Sorry to hear you had such a horrible time TTC, that must have been so hard. I am happy for you that you have your son now!

[quote murmurlade]@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?![/quote]
Yes I was nervous about trying it but did a lot of research and couldn't see that it would hurt. I think its not recommended if you are on other treatments (clomid ect) but if you are waiting for investigations might be worth a shot. I hope you get to the bottom of things I understand how frustrating it is ong cycles and waiting for a period that never seems to want to turn up and being told a diagnosis that doesn't seem to fit. I'm hoping it works again for me as the longer my cycles drag the worse physically and emotionally I feel, that 18 months of 30 day cycles was bliss.

@GrumpyHoonMain Ah I didn't know this, that sounds so frustrating for you. You would think the GP/doctors I saw would know about this and not diagnose me with PCOS but I found when I was having investigations no one I saw seemed to have much of a clue typical of women's health care problems unfortunately!

@Yaty got everything crossed for you that it works for you again xx

Hey OP, I'm too a bit confused as to what I have. I had my DS 9 years ago and was pregnant within a couple of months of coming off birth control. Months after giving birth I had a few problems with clotty periods etc so was referred to a scan and after called by my doctor to tell me I had PCOS. I've been back on birth control since until late 2018 when I started TTC #2 and so far haven't conceived. My blood tests showed I'm not ovulating/ovulating properly so was referred to a fertility consultant. I had blood tests for PCOS and a Hycosy on which when he scanned me on the Hycosy my ovaries weren't poly cystic and my bloods were okay so he said I don't have PCOS, just PCO sometimes. He put me on three cycles of high dose Letrozole which 21 day bloods on my last round showed I still wasn't ovulating so he moved me straight on to Clomid. The month around ovulation I ended up in lots of pain and by CD21 had a scan which showed I had enlarged ovaries, 5 ruptured haemorrhagic cysts (one large, 4 medium) and lots of free fluid in my pelvis. I've since had this cycle off/natural and decided I'd try OPKs as I thought if it's just PCO they should work okay. I had my peak on CD15 and had a scan the following day expecting to be told I'd ovulated but no, I haven't and I have no follicles ready to ovulate 😕 So I'm not very confused if PCO can cause a false LH surge like PCOS 🤷🏽‍♀️ I'm actually heading down the IVF route and off for AMH and AFC tests on the 9th March so I'd like to see what they say really. In the meantime I have actually started taking MyOva and L-Carnitine (which I only recently discovered the benefits on Healthy PCOS on Instagram)

@Crazydoglady123 oh what a rollercoaster, you poor thing. Maybe it's time we put down the OPKs and go into it a bit more blindly rather than getting conflicting information. A little bit of knowledge can be a dangerous thing.

My doctor said I had a number of cysts on both ovaries (don't know how many) and a ruptured cyst which had bled. On the phone I really didn't know in the moment what to ask, so I have a hundred more questions that I'll need to wait 2 months for the second scan to ask.

Have you done 3 months of clomid then before you did this cycle in natural mode? Did they start you on 50mg?

Let us know how you get on with your blood results in March. And let's stay positive. Chances are it will happen xxx

@murmurlade thank you. I felt so deflated when I was told I was having an anovulatory cycle last week. I really have lost faith in OPK's with PCO/PCOS. I wish I'd seen the Ovusense earlier for tracking BBT but I need to save the £££ for IVF now.

Sorry to hear about your scan. My ruptured cysts were horrible. The fluid they leak is an irritant to your insides. I had so much pain and bloating. I had a large cyst years ago too which I had to have removed. When's your next scan?

So I did three consecutive months of Letrozole, then straight onto my first Clomid cycle which was 100mg. I am really worried about going back on it as I totally over responded (I think it was mild OHSS) but I did release 5 eggs so I was at risk of multiple pregnancy. My acupuncturist and the lady I use for private scans are both shocked he's putting me back on it and not at least lowering the dose but he's going to monitor me at least and I have to go back on CD12 for another scan. You hear such good things about Clomid I just feel like it's worth one more shot before we shell out thousands on IVF.

@Crazydoglady123 oh poor you! Luckily I didn't notice any pain so was a surprise to me when she said one had ruptured.

My next scan is 6-8 weeks she said but waiting for the appointment. Before you know it half the year has gone by and nothing much has changed.

That does sound mad that he knows you over reacted to clomid but are doing the same again? If it doesn't sit right with you do ask him to explain why he's sticking with 100mg. Glad you are being monitored though. I have everything crossed for you that by hook or by crook you will get your BFP!

@murmurlade yeah you'll probably find your ruptured one has healed. On my scan (4weeks after my first one) mine had and yet my ovaries were in a mess on the first one.

I asked him is it worth a lower dose but he was adamant to stick to 100mg so we'll see. After the cycle before is what made my decision to go down the ivf route as purely I'd be monitored closely. When I ran into my problems on Clomid the fertility nurses at the hospital said there was nothing they could do, couldn't even get me in for a scan hence paying private. Hoping this next and last Clomid cycle is straightforward and works so we can avoid ivf.

Have you taken any supplements for PCO/PCOS? Have you read up on myo-inositol if you have long cycles?

@Crazydoglady123 no I haven't taken anything specifically for it. I've been talking folic acid and vitamin D obviously but nothing else yet. Well I ordered vitamin b6 as I read things saying it helps to regulate your hormones, but stopped when I saw people say it lengthened their cycle – that's the last thing I need! I will have at look at myo inositol. With these things do you discuss with your doctor/let them know that's what you're taking, or just crack on?

I have everything crossed for you that clomid works before IVF, but if it doesn't then you will be on the most focused possible plan and carefully monitored which will be great.

[quote murmurlade]@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! :)[/quote]
My dd had very very light periods with months and months in between, back and forth to GP etc. She eventually had a scan and was told she had PCOS even though hormones/bloods were 'ok'.
BUT looking at her bloods we noticed her ferritin/iron was very low normal (ridiculously huge range of what is 'normal'). So she started taking an iron/multivitamins every day and upped her iron rich foods and low and behold her periods started back almost immediately. They are now regular as clockwork and fairly heavy to boot.

I know this probably won't work for most women but felt I should share just in case.

@AnonymousAnnabelle ooh thanks for weighing in! Weirdly my iron is high, over the normal 13 to 150ug range, at over 220ug. But my doctor marked that as normal. So I just put that down to not having periods and retaining too much. Honestly I must imagine myself with a medical degree that I really, really don't have! 😄

But this might help someone else – there are so many things that must affect menstruation and I'm obviously not knocking doctors in any way but they do seem to mark a lot of things as normal when maybe they aren't.

@Crazydoglady123 how did your blood results go?

Hey @murmurlade My AFC and AMH tests were really good for my age and had my IVF consultation and we've actually been told we could start this cycle! Typical I'm on my Clomid cycle but we have DTD so as long as we abstain and I ovulate before CD21 I can start down regs. I haven't told my NHS consultant yet but have a scan Monday to check what the Clomid doing to my ovaries. So far I feel okay but the time frame I ended up last time in a lot of pain would be end of next week so we'll see 😬 How are you doing?

@Crazydoglady123 oh that's great news! Really hope you don't have the same horrible pain as last time. Keep us posted on the IVF!

I've got another scan this week after having a big old haemorrhagic cyst last month.

I had a positive ovulation test yesterday on CD27 (well a static smiley, the strips still haven't got higher than 50%) so I don't really know where I am with it or what to believe! My hope is that my cycles will become regular, even if they are long like the last one at 45 days, I think I can handle that, as long as I can be sure I'm ovulating. It's the not knowing. Can they tell at the internal ultrasound if/whether you have ovulated, do you know? I also don't know whether to request a day 21 blood test (which for me would be more like day 38).