TTC with PCOS and cycles getting longer

[AprilMayAnne]

Not super sure what I'm looking for, but I'd be so grateful for any advice, good news stories or reassurance.

I'm 31 in 2 weeks and currently TTC our first. We've only been trying for 3 months, which I know is absolutely nothing, but I've only ovulated once in that time and it's starting to worry me as my cycles are only getting longer.

I came off the pill at the end of August 2021 after nearly 15 years of birth control. I have ovulated 3 times since with cycles of 45, 44 and 64 days. Last cycle was the first we tried I was 2-5 days late for AF but tests all negative. I'm now CD 52 and haven't yet ovulated, which will make this cycle my longest yet.

I'm tracking my BBT and using OPKs. Keeping an eye on CM too but my patterns are erratic. Tried a bit of acupuncture in my 2nd/3rd cycle but got Covid so put it on pause. My TSH was 3.7 (not technically high but not ideal) so the GP precribed 25mg levothyroxine which has brought it down to 1.7. Then my testosterone came back at 2.4 (upper reference range limit 1.8) so I've been referred for an ultrasound of my ovaries but as I still fit the criteria, I'm being treated as PCOS. I've been on metformin for about 4 weeks and started taking myo-inositol (40:1 with d chiro) at the same time.

I have a healthy BMI (around 23.5) and think I eat a pretty good diet. I have a bit of a sweet tooth but nothing crazy, and have tried to cut back on pasta and bread. I've been off caffeine for ages and though I cut out alcohol for a while, have gone back to drinking a glass of wine here or there. Nothing too heavy. I walk a fair amount every day and have had periods of exercising more frequently, but admittedly could do more.

I've been trying hard to relax and not stress to much, but ocassionally it all gets on top of me. It's hard not to get obsessive when I feel like it would be so easy to miss an ovulation and then have to wait ages for the next. DH and I have found a good rhythm for DTD every 2-3 days now, but have struggled with the pressure of keeping that up for weeks while ovultaion evades me.

How long might the metformin take to work? If I'm not actually insulin resistant, could it cause any problems to be taking it? Is there anything else I should be doing differently?

The GP has said he'll refer me at 1 year if things don't work out for us in that time, which I'm lucky for. Depending on what my ultrasound says, and whether my cycles start to improve, at 6 months of trying (which will be 10 months off the pill) I'm considering seeking private treatment with clomiphene, but it looks like an expensive route. Has anyone else tried this?

Congratulations and thank you if you've made it this far! 💐

TLDR: Early days of TTC. Started treatment for likely lean PCOS, but cycles are getting longer and becoming discouraged. Any tips or good news stories really welcome.

I know this is super naive of me but I never really anticipated that beginning TTC would be anything like this. My mum always picked up her children on the first try and has been very blasé and a bit dismissive about my worries, and I'm feeling a bit lonely with it.

Hello :-)

I also have PCOS and suffer long cycles. I've been on metformin now for 5 months (whilst waiting on an nhs referral to gynae...) and my cycles are getting shorter but not entirely sure if I'm always ovulating as opk's are notoriously unreliable for PCOS'ers!

My cycles didn't reduce straight away so I'd give it some more time. I have just gone private to monitor the pcos and get some tests for my own sanity as didn't feel my gp was taking me seriously. Low and behold the consultant is shocked my metformin is such a low dose given my scans and symptoms so he has tweaked that and we are giving it 3 months after which I'll be moved over to his nhs clinic and will start clomid. We have been trying 18 months now so I wouldn't panic too much but just be mindful of who is managing your pcos as if it is a go they really aren't experts.

Not sure I've been helpful here but I hope things speed up for you there is nothing more frustrating than slow cycles 😩😩😩😩 xxx

Kath2021 I'm so sorry for the looong time before my reply but wanted to come back to you and say thanks so much for responding 🙏

My NHS ultrasound showed bilateral polycystic ovaries. I took your advice and went to see a private doctor. At that point my CD52 cycle had reached over 100 days and I had been on metformin for 3 months, mostly at the max dose, with no change other than my cycle continuing to stretch out. Further private scans showed my ovaries had 20-25+ follicles in each, and also my uterine lining was really thin, likely too thin to sustain a pregnancy even if I had eventually ovulated that cycle. I understand in most PCOS cases with long cycles the lining does the opposite and gets too thick.

Because I'd not shown any response to medication the doctor was happy to get me started on letrozole (an alternative to clomid) and I'm in my first monitored treatment cycle now. It's a real emotional rollercoaster but I'm glad to be getting some specialist care and a better chance at conceiving. It definitely makes a big difference to have an expert care provider who can work proactively with me on this, you were really right. Fingers crossed, ey!

I'm glad to hear that with the right support your cycles are getting shorter, sounds like you have a great doctor om your side. Wishing you every good luck too! 💐

What dose metformin are you taking? 500mg and 1000mg a day did nothing for me but I ovulated pretty much exactly a month of 1500mg a day and have been regular since!

Thanks for responding endogal! 😊 I started at 500mg but built straight up to 1500mg over 3 weeks. My GP told me to get up to the max dose I could tolerate as quickly as I comfortably could. I was on 1500mg for 3 months or so and then went up to the max of 1750mg per day. No change - I guess it just doesn't work for some people 🤷‍♀️ though I realise 3 months isn't all that long in the grand scheme. I also took 40:1 Myoinsotol:D-chiro 2mg twice daily, though I've since switched to inofolic alpha at my doctors recommendation. And been taking extra vitamin D. I've made an effort around diet and exercise too, though I can be patchy and far from perfect with it. It's tricky to do without losing weight (I have a normal BMI and a slightly complicated history with food so want to avoid that). Lifestyle factors is what I think I need to work on next though.

It's great to hear its improved your cycles though! My doctors have said that even if it didnt reinstate my cycles it might still help sensitize me to the fertility drugs, so it's worth cracking on with in any case. 🤞 it's doing some good, I've had 2 follicles mature in my first round with letrozole so I'd like to think the metformin is playing its part!

Glad to hear you are on letrozole now @AprilMayAnne - what dose? Is that through NHS or private? We have a thread here if you'd like to join www.mumsnet.com/talk/infertility/4441620-TTC-with-Letrozole-Clomid

Glad to hear you’re getting some help. For inositol to be truly effective you need around 4mg per day, double what you were taking. How much are you on now? Fingers crossed for you that you ovulate!

Hi TheDaydreamBelievers and The Isaacs! Really kind of you to respond and I would love to join the letrozole thread, thank you ❤️ though I'm 31 I'm one of the first in my circle TTC and don't know anyone who's been through this before.

We've sought treatment privately, but at a clinic that also does NHS work. We were initally assessed by a doctor who works in the NHS and assured us he doesn't practice any differently when cosnsulted privately. We're thinking that we'll fund our letrozole treatment and if it comes to IVF, we'll go NHS. The timing would line up for an NHS referral if we need it (providing we don't have any losses in the meantime).

This first cycle I was put on 5mg of letrozole daily on days 2-6 of my cycle. I was monitored with scans and took a trigger shot on CD18. Today CD20 I've started on 4mg oestrogen to support my lining and cyclogest, one 400mg pessary twice daily 🤞🤞🤞

I've been taking 2mg of myoinoslitol formulations twice a day so 4mg altogether - should I take 4mg twice daily?

Thank you so much for reaching out and for your advice!

Oh, 4mg a day total, sorry! I thought you meant you were taking just 2mg, so you’re doing the right thing already. I take the myova tablets, 4x a day! I couldn’t get on with the powdered version.

Hi, I also have PCOS and been trying to concieve for over a year. I feel your pain, when I first came of the pill my cycles were regular for a few months then gradually became longe and longer, I’m now on cycle day 74 and my previous was 80.
My doctor sent me to gynae who wants to check for endo as well via laparoscopy (even though he doesn’t think I have it?)so wouldn’t prescribe me anything to help ovulation. The waiting list is over 6 months for the op so I’m now going private this week for another opinion! It’s so frustrating isn’t it!
I take myo and d-chrio inositol which although it doesn’t help my cycles it has helped keep my skin clear etc. The NHS gynaecologist also told me to take folic acid.
In terms of food and exercise, I don’t eat dairy which I do feel keeps some symptoms at bay as their can be a lot of hormones etc in cows milk. Don’t cut carbs but try and pair them with good protein and fats to stop insulin levels spiking. Low intensity exercise is also best for PCOS as high intensity can cause rise in cortisol levels which can disrupt our hormones!
it’s so frustrating with PCOS but I’m sure we will all get there sending you all the luck in the world