Diagnosed with PCOS - Experiences/Advice please x

[VP91x]

Hi All,

I've just been diagnosed with PCOS. I'm 29 and I have a 2.5 year old daughter. I got pregnant last year but easily miscarried in Dec. I never used to track my periods etc but since the MC I've had anovulatory cycles and irregular periods, alongside hair loss. I would just find it so helpful if ajyone has PCOS if they could share their experience or give me any advice on how to manage it or tips to TTC successfully xx

Unfortunately miscarried that was meant to say **

Hi @VP91x,
I was diagnosed with PCOS in February, the only symptoms I had were irregular periods/anovulatory cycles since coming off the pill. I googled absolutely loads and got myself even more worried about it all but did find a lot of info around diet changes so started cutting back on sugar/gluten and dairy then was put on metformin in April and got pregnant really quickly (first time bbt ever picked up ov), but had a mc at 10 weeks and now waiting to get my cycle back so I can push for repeat bloods and see if the fsh:lh ratio has improved! There seems to be so many variations to pcos and not much clarity about next steps!
Has your doctor been helpful since your diagnosis? X

Hi @LCTTC thank you so much for responding 🥰

Did the Metformin help you feel better? That is what I am going to try and push to be put on. My doctor hasn't been particularly helpful. I only found out because I had to really push for FSH/LH blood tests and I paid for a private pelvic scan as the NHS wait was going to be insane. I also had no idea I had it, we weren't trying when I conceived my daughter and we also conceived last year but sadly MC at 9w last December. I'm sorry you also had a MC 😔.

Out of 6 cycles since then I have only ovulated once that I can absolutely confirm and they have all ranged from 20-32 days. I'm now on Cycle 7. It is scary reading everything! I'm overweight too so I have started eating more healthily to keep trying to shift it. How long has it been since your MC? I hope it doesn't take too long xx

I’m really hoping the Metformin helped me to ovulate, I got pregnant 3 weeks after taking it (hope that wasn’t a coincidence) but it feels like I’m doing something! Had 3 cancelled fertility appointments before the doctor agreed to put me on it!

It sounds like a good sign that you’ve been able to conceive and have a healthy pregnancy before, maybe that means you just need a little boost of something to help you out!

MC was 4 weeks ago, my cycles were super long, 60+ so worried they’ll go back to that or worse! FF says I ovulated last week but my temps have stayed just above cover line and no big spike so not sure I trust it!

NHS waits are ridiculous, considering going private for more tests too! I’ve started taking inositol too (like a natural metformin) and seen things about Inofolic but that’s a bit more expensive so holding off for now, then might try soy iso to try and boost ovulation and get temps up next cycle!

Good luck with the doctors, let me know how you get on x

@LCTTC I hope they don't take that long for you to get your cycle back. Mine took 8 weeks but I had some retained tissue so that probably caused more of a delay.

Appointment with my doctors was positive she referred me to the gynaecologist for 16th Sept. This month I'll have further bloods to check if I have ovulated, bit tricky to time but I'll do OPKs and hopefully get a peak. She said that the gynae would look at putting me on the Metformin. Is this the myo-inositol on Amazon? When do you start taking it? I'd be willing to try that, not sure if I'm too late into this cycle. I took Soy Iso last month, because I'd heard it was good at boosting ovulation but then not great if you have PCOS which I didn't know at the time. I reckon that's what shortened my cycle again this month. Didn't have a big temp spike above coverline so don't think I did ovulate in the end either. But, if your cycles are super long maybe it would work better for you. I got them from Tesco £4 for the bottle. Xx

@VP91x Amazing result from the doctors, that’s so quick for a referral appointment and great news that they’re doing bloods for ovulation! (I’ll add that to my list of things to push for )
I got 100% inositol from myprotein, I’m taking so many supplements I didn’t want to get anything else mixed it and this was on sale, I ordered it on the day of MC and just started as soon as it arrived. Figured I was able to start metformin any cycle day so just went for it!

Oh no, that’s rubbish about not ovulating with soy! I thought it would’ve been really good with pcos as it’s meant to be like clomid...thanks for the heads up, will do more investigating! I’ve got the Tesco ones too, bought them in dec...still waiting for a proper Cd1 to start them! X

@LCTTC it doesn't cost them anything to just print the forms and give you some idea of what might be going on. That's why it is so frustrating when they make you wait for ages.

I've just ordered the Myo-Inositol supplement from Dr Fertility Friend, lots of positive reviews. It's pricey though, nothing is ever cheap with these things is it!? Yes have a little read, it may well work for you but my body was just not playing ball. I took 200mg from CD 3-7 x

@VP91x so many good reviews on that one, fingers crossed it works and you don’t even need the referral! Cost isn’t too bad if you’ve got the sept cut off to stop taking it!
I’ve probably got nothing to lose with the soy...as long as it doesn’t get any longer 😂 X

I was diagnosed with PCOS about 25 years ago. At the time I was doing PhD research with users of the verity forum. Although sceptical, I experimented on myself and I started a low carb diet. After a short time I restored my cycles and fertility (i have naturally conceived DC) and did not go on to develop type 2 diabetes.

Despite earlier referral to ob/gyn and fertility treatment (not IVF) my doctors now say the original diagnosis must have been a mistake because PCOS can't be cured.

I don't really care. Insulin is a hormone produced by consuming carbohydrates and interacts with reproductive hormones effecting menstruatal cycle and conception. For me, controlling insulin was the key.

This is what metformin does but you can also control insulin through diet and as metformin was not licensed for PCOS, this was what you had to do.

Given the side effects and lifelong benefit of adjusting diet, I would rather control insulin through diet.

@KeepOnKeepingOnAgainandAgain It’s so encouraging that you’ve seen a huge benefit from the diet changes! How strict have you had to be with the low carb diet?

@KeepOnKeepingOnAgainandAgain I’d like to know the answer to the below too! Is 100g a day or lower ok?

How did you get on? @LCTTC I’m trying to conceive after being diagnosed with PCOS x

To the above I mean!

@Oscarssmum I booked a private appointment and was really lucky to get pregnant on the first cycle of 50mg clomid then took progesterone from BFP to 13 weeks x

Amazing news @LCTTC
I’ve got a private fertility appointment on Tuesday - no idea what to expect. Can I ask what they do/say at the first one? Hoping I get put on clomid - my cycles are between 45-50 days :( thanks for replying btw xx

@Oscarssmum first time I went was for a scan and bloods for AMH test then had a consultation a couple of weeks later to go over those plus results from when I got diagnosed and husbands SA (from nhs), medical history etc and I got a prescription straight away for clomid and provera - my cycles were really long and I didn’t want to waste months more waiting (didn’t need to take provera as first natural period since mc 8 weeks before came the day after I’d collected it) think I had another scan at day 10 to check follicles and bloods at day 21 x

@LCTTC really helpful, thanks! X

Hey,

I’m a bit late to this thread, but I have PCOS and being honest other than an irregular cycle the symptoms weren’t too bad when I was younger ... in my thirties symptoms got much, much worse - hair thinning and weight gain.

I’ve read so many books on the subject as I felt my doctors just wanted to medicate me rather than treat the underlying issues.

I started a low carb diet - mostly eating ketogenic recipes with no bread, pasta, rice or potatoes, no alcohol and low sugar. It can be hard but weight has come off and my cycle has dropped from 70+ days to just over 40 days. I’m also ovulating again - I’ve been using ovusense to track ovulation and hoping I get a BFP soon. The right diet makes a massive difference to women with PCOS.

Stay positive xoxo

So reassuring to read this thread! I've recently been diagnosed with pcos whist ttc #1 and am currently waiting for the gp to hear from gynaecology as they're struggling to get the right day for my day 21 bloods (common problem with pcos I assume!) to see if i ovulate/my progesterone is high enough. I always have a positive ovulation stick at basically the same time each month but my cycle length from ovulation to period is the bit that then varies, hence the difficulty with correct blood test timing!

I've also started a keto/low carb diet and Agree with the need to reduce carbs to control insulin etc. If I can avoid diabetes I will! I have a lot of weight to drop and am officially obese (I know, what an awful person!) and it's working well and I feel loads better for it.

The whole pcos is a minefield I realise. Apart from being told I have it and dropping weight would help I've just been left until we hear from gynae about when to do my bloods! No advice given otherwise. I've read metformin would help with my excess hair (yep, I'm a lucky fat and hairy one!) and help with weight loss so not sure if I should push for this regardless?

Have you also had your thyroid tested?

Agree low carb is good for PCOS (especially avoiding high GI carbs like sugar, bread and baked goods, mash and cereal) .

I have PCOS and conceived within a year and a half, just by chance I think. We didn't track cycles or do anything to put any pressure on it, so I really think we did just get incredibly lucky. We were just about to get help to conceive.

I’m using ovusense which is a fertility monitor which works with pcos - I’d recommend anyone read up on it to see if it would be suitable for them - read different sites as there are always discount codes lurking about.

My sister is struggling to get an appointment with gynaecologist- she’s started berberine in the interim ... she feels it makes a difference. Some studies suggest it performs similarly to metformin.

Can I ask, has anyone on this thread had their partners fertility tested? Now we know I am ovulating and when I’m wondering how long I give it before he gets tested.

No not had a thyroid test yet, should it be something I ask for? I feel like I was told I have pcos and that was that, basically told nothing about it but get slim! This hasn't stopped the referral to gynae so the gp is still doing all the steps but im like ok! I'll just lose weight then yeah? That simple?

@Louise1051 my situation is a little different due to my husband having cancer last year but what I do know is that had he not been going down a slightly different path for his fertility checks etc then the gp would of had him tested too by now. She said that first steps are my blood testing, internal ultrasound, husband sperm analysis and then also a chlamydia test for me. So your dh should get checked now :)