PCOS

[CooperLooper]

Hey everyone.

I've been told this week that it's likely I have PCOS and I'm just really looking to chat with people in similar situations and/or those who can advise me on next steps really.

My background - H and I are both 29 and TTC our first. I've been on the implant (Nexplanon) for 6 years and the pill for god knows how long before that, always considered myself 'lucky' 🙄 for never having periods whilst on contraception.

We got married last year and had my implant out in October. But since then my cycles are just impossible to predict. They are ranging from 27-50 days, and I have delayed ovulation anywhere between CD18-CD34. My luteal phase is also consistently only 5-6 days each time, with just a one day AF. My LH is high (just under a peak reading) for a good two weeks of the month too.

I've had missing periods in the past when I was a teenager which was probably a sign we should have noticed earlier, and recent bloods have shown my androgen levels are high. No cysts on my recent scan but with missing periods, irregular cycles, delayed ovulation and my blood results the doctor has suggested it's PCOS.

I know we're still only early in the grand scheme of trying, but just wondering if anybody else is similar? And how you're getting on?

Other than losing weight (can't we all), what else can I do to help myself? My GP mentioned metformin as a possibility but ideally wants us to try for at least a year. Which is fine if that's what the rules say, but frustrating when I know conception is physically impossible with a 5/6 day luteal phase. So it's upsetting coming to terms with having to waste another 6 months until we can do something.

God that was long - sorry. Would be good to chat with anybody with similar experiences.

Thanks.

[Hatepickinganame]

I dont have any similar experience but i do have pcos and didnt want to read and run. I get multiple cysts and some of them grow quite large, the last one was just under the size they recommend surgery for. I usually get crippling pain in my left side when one has gotten big. Everyone's experience with pcos seems to be different from what ive read on here, but ive had 3 children so far and this would make no.4. I didnt experience any problems with the first 3, pcos was only diagnosed with my second as they thought he might be ectopic. Since then ive had two laparoscopy operations and i had a coil fitted that seemed to help the symptoms i experienced for a while. The side pains were getting worse by the time i had it removed. This will be cycle 4 for me so not sure if pcos is affecting me more now im older in terms of fertility, as ive never actually had to try before. This ended up being quite a long response, sorry!

[Mycrazylife85]

Sounds like me. I came off the pill January 2019 and my cycles are anything between 37-84. Generally 37-40. My weight is okay but I'd rather loose a few pounds. I was diagnosed with PCOS at 16 and he told be re-tested recently. They call mine 'mild pcos' as my hormones are generally okay but my LH and FSH (?) are double which indicates PCOS syndrome and my cysts come and go. I have very noticeable front lobe hair loss though. Very, very thin hair.

I've taken to temping and I would very much recommend. You'll get used to it but it's good to see a pattern. I do ovulate and can tell by my temperature what part of my cycle I'm on and also what day I'll start spotting. I have been using myo-inositol in powder form 4g too but still have long cycles. That won't harm using either. Have a look into it. Good luck

[3dogsandababy]

I got told I had pcos when I was 14 and was told last year I'd never conceive naturally.
I'm now sat here with a big fat 30 week baby belly after not even actively trying for a month!
I'd try and get a second opinion, and just have fun trying without putting pressure on yourself 😊

[3dogsandababy]

Also, I had cysts on every scan I had prior to getting pregnant and abnormal hormone blood tests so we really didn't think it would happen!

[Elhan]

Within 3 months of taking myo inositol i Was pregnant, we'd been trying for 2 years. Either a very big confidence or it worked. Also my periods went from sporadic to spot on every month.

[CooperLooper]

Thanks all 😊 I'm temping already but I'll have a research into everything else you all suggested

[myleg]

Hiya

I have pcos but I wasn't overweight. I found out when I was around 18 and now 25. I went private to go into metformin as they probably wouldn't give it to me unless I was hoping to get pregnant but I wanted my periods to come back. After the tablets they thankfully came back so last year I was ready to conceive and after taking it after a few months I am currently 3 months pregnant :)

I owe it to metformin, my miracle drug to be honest. Hope it works out for you

[becca321]

I found out I has PCOS when I came off the pill for trying for my first and period never came.
We ended up having her after 1 round of clomid (that we were told hadn't worked). When she was 16 months found we were pregnant with out second!

Now trying for third and seem to be having a flair up, lots of painful cysts/ovaries, cycles getting longer (around 45 days) and lots of spotting.
If I'm honest still kind of struggling with confirmation of diagnosis recently as I was so sure it was a blip as got pregnant so easily with second, but must have just been lucky! Waiting between long/irregular cycles is hard x

[Leodot]

Hi @CooperLooper,

I totally get how frustrating it is. I’ve been ttc my first for 20 months and I was in your situation earlier this year. My husband and I had been trying since July 2018 and I kept going back to the doctors and telling them I wanted a referral to the fertility clinic, as my cycles were between 50-85 days long and I had never gotten a positive opk so doubted I was ovulating. Similar to your issue with your luteal phase, I didn’t see how I could get pregnant if it was unlikely I was ovulating.

In September 2019, my GP finally made a referral. Had my first appointment at the fertility clinic in October but because my GP hadn’t done any up to date blood tests, HSG, ultrasound etc they said they couldn’t give me anything until I’d had all of that. My consultant was furious with my GP and said he had been “time wasting”. By the time the tests were all done and the results were back it wasn’t until January this year before I was finally given metformin and clomifene. This has been brilliant. I’ve done one cycle of met to get myself regular- had a 34 day cycle which is unheard of for me and am now on my second cycle of met and first of clomifene. Think I’m either 1dpo or 2dpo, just waiting for my app to confirm ovulation.

I would start bbt like others have suggested, as even if you’re cycles are long, it will start to show you a pattern. I know how upsetting it is to think you have to waste another six months when you know there’s a problem. Could you go back again in two/three months and try to see a different doctor? Remind them that they mentioned metformin and ask to try it again. Mention the luteal phase and irregular length again. Don’t be afraid to really question your GP over why they aren’t giving it to you. Also, just keep trying in the meantime and try not to let yourself go mad, which I know is easier said than done! Good luck! ❤️

[CooperLooper]

Thank you 😊