Does anyone on here have PCOS?

[VillageFete]

Hi,

Before I fell pregnant I was taking Super Ubiquinol CoQ10 for almost 3 months, and also 4mg of Myo-Inositol a day for about 5 weeks. I have PCOS.

I’m terrified i’m at an increased risk of miscarriage due to PCOS. For what it’s worth my BMI is 25, I exercise 3 times a week and my diet is ok - plenty of fruit and veg but also plenty of carbs and wine

I’ve stopped the Myo-Inositol and other supplements as per the Dr’s instructions after she drew my blood to test Hcg (Hcg is nice and high and is more than doubling) Is there anything else I need to do or stop?

Any success stories of those with PCOS who have seen a heartbeat/Had a successful 12 week scan?

I feel scared all of the time.

I have Pcos. Took artificial progesterone to give me a period then took chlomid to make me ovulate.
Hormones make you feel garbage! I got caught on second cycle. I had a feeling my 'cycle' was about 31 days. I knew 5 days before I was due on and was convinced I would bleed, and even after I missed my period I was convinced my 12 week scan would show nothing.
I'm 39 weeks pregnant tomorrow.
Hold strong. I've never been told I am more at risk than a tone else and my pregnancy has been smooth aside from intense anxiety!
All the best hun

Thanks for the reassurance, really appreciate it. Did you get an early scan or just wait until 12 weeks? I’m just scared it’ll all too good to be true!

Had to wait until 12 weeks. Very hard when I found out so early.
I was bawling in the waiting room so I feel how anxious you are or will be until you know.
I didn't feel pregnant at all at my scan until I was baby and I cried my eyes out again x

Another one with PCOS. 22+3 at the mo. Constantly paranoid

Hi Villagefete,

Fellow pregnant cyster here and i have quite a similar situation to yourself. I have the same BMI and i was taking ubiquinol for years to help egg quality. I tried Inositol for a little while after hearing great things about it but it had quite an adverse effect, so i stopped it and continued with my Metformin which seems to work far better for me.

Have you been prescribed Met at all? If not, it may be an idea to ask your Dr about it. Studies have shown Metformin greatly decreases the risk of miscarriage in women with pcos when taken before the 12 weeks. You may also want to ask to have your progesterone level checked to make sure it's increasing as it should do and to put your mind at ease. But to me it sounds like you're healthy and have a good grip on the pcos. Miscarriage is linked to insulin resistance and the Inositol you've been taking will hopefully have counteracted that so far.

How far along are you in the pregnancy?

I know it's so easy to tell you not to be scared, and you'll worry regardless, but try to put the fear right to the back of your mind. So many women with PCOS don't miscarry! In fact, the majority of us don't.

If you are on facebook, join a few of the groups related to pcos, they are incredibly helpful. And download the babycentre and glow apps for your phone - both have specific groups for pregnant pcosers with a tonne a information to help settle your fears.

Oh, and i'm 29 weeks and my little guy is kicking the crap out of my bladder as i type this. :) Focus on all the good stuff coming - don't spend the next X amount of weeks a big ball of anxiety. It's so not worth it. x

I was told I had severe PCOS. Tried for years to get pregnant. The consultant at the time told me I'd never get pregnant without his help.
Lost a lot of weight, and fell pregnant within a few months of trying with new partner. DS1 is currently running around making a mess, and DS2 is sat on my lap having his bottle. I was never told I was at an increased risk of miscarriage, but I didn't believe I was pregnant until I saw the images at the 12 week scans.

Thanks for all your replies. It’s really good to know i’m not alone in my worries!

@PatsyStone39 I’m only 5 weeks today. I have had 2 failed IVF cycles and have progesterone pessaries at home from them cycles which I could take, but then i’d be scared that if I stopped at 12 weeks, i’d then miscarry? I was told to stop the inositol now that i’m pregnant, the Dr at hospital didn’t mention the metformin, but I could mention it to my GP on Monday when I ask for progesterone bloods? FWIW this is a natural, miraculous pregnancy. X

We did IUI's to get pregnant over 6 loooong years, but, to cut a long story short, it turns out it wasn't my pcos preventing pregnancy - it was low iron and ferritin levels all along. 8 weeks on a high dose or iron and bam, pregnant. Sometimes your body just lacks something, and in your case it's likely been the inositol that's done the trick to balance your hormones. So I understand the sudden miracle and the anxiety to make sure it sticks.

We had a reassurance scan at 7 weeks with the fertility clinic. Seeing the heartbeat was like a weight being lifted. If this is something you can afford to do, i'd recommend it. Because it's a long wait to the 12 week scan when your brain's in overdrive.

We did the pessaries for a few weeks but stopped long before the 12 weeks - in fact, i think I stopped after the 7 week scan because the high progesterone was making me a crazy woman! Maybe wait until you speak to your GP and ask their advice in regards to restarting. They may want to check your levels to see if you even need it, but it is natural and has no adverse affects either way.

Inositol has been deemed safe to take during pregnancy, and just like metformin, it's linked to preventing miscarriage and gestational diabetes. Your Dr may not have done any research on this so has said to stop just to be on the safe side...but do your own reading between now and your next appointment. Print out some medically sound articles for the Dr to read and make your own mind up whether to stay on it. Or try to speak to your old consultant from you IVF cycles, they may know more. If it was me, personally, i'd have kept taking it.

Patsy What’s worried me is that it says “don’t take if pregnant or breastfeeding” on the inositol box, but I guess most supplements would say that. I was thinking of paying and chatting to one of the IVF consultants if that’s allowed, i’ll have to ring and ask on Monday. The problem is, it was them telling me not to take the COQ10 and inositol in the first place! But my own research concluded that I should.

I have a scan booked this Friday due to my history, my local early pregnancy unit are providing it, and then i’ll pay for another the week after! The Dr in my epu said I could take progesterone if I wanted, it would do no harm, but is unlikely to do any good either. My side effects are awful off the progesterone, and I just don’t know whether to take it or not? I feel I need to speak to an expert, and i’m not so sure my local GP will have the answers to my questions?

See, this is the problem, every Dr says something different. In my fertility journey, i don't think i've ever had two that were on the same page about anything. I don't trust many of them, sadly. They may be great at what they do but when it comes to PCOS, the majority are bloody useless. They don't keep up to date on research and medical advances.

Go with your own gut instinct and do what feels right. No one knows your own body like you. And keep researching. New medical research articles are published regularly with updated info.

Google "is Inositol safe during pregnancy" and go from there.

Your GP may feel more confident and knowledgeable about Metformin so may be more inclined to have you take that. So also search for "metformin to prevent miscarriage".

Once you see the heartbeat at the scan on Friday, you may decide you want you do and take nothing. The risk of miscarriage after a detected heartbeat drops significantly.

But whatever you chose to do, i wish you the best of luck. I will keep everything crossed for a healthy and happy pregnancy for you. If you can, update us after the scan. I'll send you good vibes on Friday. :) x

I massively appreciate this, Patsy, thank you. I’m just torn.
You are correct, you don’t get the same answer from 2 Dr’s. I feel like i’m banging my head against a brick wall with them half the time. They are clueless when it comes to PCOS.
I’m doubtful i’ll see the heartbeat on Friday. I’ll only be 5+6 based on conception date. I think once I see the heartbeat i’ll relax and leave my body to do its job, but until then i’m in the anxiety filled hell hole!

Ah, yes, I’m forgetting you’re still so early! Don’t panic if nothing, not even a sac can be seen - before 7 weeks very little is detectable. Baby is the size of a teeny poppy seed.

You’re welcome and feel free to keep posting asking questions if you want to pick my brain. I was diagnosed with pcos at 13 and I’m almost 38 now, so I’ve had a very long time to get myself clued up on this crappy condition!

I think i’m just in shock, Patsy. I have a naturally conceived almost 9 year old, but I was a lot younger back then and I don’t think I had PCOS? I’m 33 now, my AMH is 59, but my periods have always been fairly regular (between 30-36 days) My Consultant has never been overly concerned with my PCOS in regards to IVF and only ever put me on Metformin to reduce the likelihood of overstimulating from the IVF drugs. I was told to come off it inbetween cycles. Haven’t had it for months now. Not sure if i’m massively worrying over nothing. My body has grown a child before and all was well (besides the emergency section messing up my right fallopian tube) Luckily, a scan revealed I ovulated from my left side and this is why i’m magically pregnant!

You know, I think you’ll be fine. I really do. Given your history, I don’t think you’ll have to worry with this pregnancy. Pcos varies in severity and It sounds like yours is on the milder side of things - with low bmi and regular periods - I bet your hormones are regularly stable, too. Get these two reassurance scans out of the way and start enjoying every minute of the pregnancy. What will be will be - but I’ve got a good feeling about it. I Promise.

Hi,

Just wanted to give you a bit of reassurance - it took me 3 years and a change of GPs to finally be confirmed I had PCOS. I fought my old GP for ages to test me and he basically refused saying that as I didn’t have facial hair I couldn’t possibly have it!
I finally got official diagnosis and was aiming to go on clomid when I found out I was pregnant - I then spent 9 months terrified something was going to go wrong.

I now have a beautiful healthy 2 year old son.

Another thing which threw me was at 8 weeks I started spotting, absolutely terrified myself and my husband before I was told it’s actually quite common but no one ever told me. If it happens, get yourself checked out but do not panic xxx

Lots of women (myself included) have successful pregnancies with PCOS. Mine was after Clomid, no other supplements. Had a scan at 7 weeks with the fertility clinic, but they stopped seeing us after that.

There's a lot of unregulated claims for various treatments on the internet so just because your doctor doesn't recommend something doesn't make them clueless.

I have PCOS and as with my first pregnancy I took 4g myoinositol per day, drank lots leading up to conception and my BMI and diet is the same as yours. I have a bouncing healthy boy and this is my second pregnancy. You'll be fine, try not to worry xx

@PatsyStone39 Thanks again, you’ve really helped me to calm down. I will see my Dr tomorrow and also hopefully be able to see a Consultant at my fertility centre, even if I have to pay. I’ve just found 2 packs of Metformin in the cupboard, each tablet is a dose of 850, but I don’t feel comfortable taking them without approval.

@SockQueen What I meant by the clueless remark was the fact I was shelling out £115 for a quick chat with 2 separate Consultants during my IVF journey. One believed in Metformin, one didn’t, one believed I need to be stimmed a certain way in IVF, the other disagreed. It was ridiculous and like they were making things up as they went. Also, I see a different GP in my practice every time I go (It has lots of GP’s) And up to now, none of them have ever really had a clue about my PCOS and how it needs to be managed. They all seem baffled by the condition. It’s incredibly frustrating.

Thanks all for the replies, it’s great to know there’s plenty of women with PCOS who maintain a pregnancy without the need for additional supplements.