PCOS - support

[Megs26]

So myself and my husband have been together for nearly 11 years, we have wanted children since we met but have never felt in a position where we were ready (I wanted to get my degree, get our home, and get married). I came off the contraceptive pill in May 2022 as we decided we were both ready a year ago, but TTC has not gone to plan.

I had several debates with the doctor regarding my body doing weird and wonderful things since coming off the contraceptive pill, and after a few months I was sent for an Internal Ultrasound. I was diagnosed with PCOS and started taking Metformin 9 weeks ago. I have been referred to the fertility clinic and I am now waiting for an appointment with them.

My husband was tested and his results came back fine.

I have not yet seen any difference with Metformin (I know this has only been 9 weeks, but I expected to see some small changes). This week I have started taking Inofolic after reading such good reviews/ success stories.

I am now filled with anxiety waiting for the fertility clinic to contact me, and I've been told the wait could be another 3-6 months.

My emotions are all over the place with all the unknowns, so i'd love to hear about other people's experiences (I do not know anyone else with PCOS who is ttc), waiting times for the fertility clinic, next steps, and any advice is of course more than welcome too!

The wait time for fertility clinics on the nhs can be years, and they’re utterly useless for PCOS. You’re better doing all your own research and working out what supplements you need. I’ve been ttc with pcos for 5 years now.

@Megs26 I have also been TTC with PCOS. This is month 12 and 9dpo so fingers crossed. I went to the GP as soon as we started TTC as I have had very irregular periods my whole life and kind of knew I had PCOS or something like that. I got diagnosed and referred on to a reproductive endocrinologist fairly quickly. We have gone down the route of ovulation induction using Letrozole. This is our second medicated cycle. From all my research it seems most people with PCOS conceive eventually with a little bit of help. I am in Ireland so things probably work a little different in terms of how quick you can get appointment. I decided to go private rather than wait but I know that’s not always an option.

Thank you for this reply. This is so helpful!

This is actually the second time someone's mentioned Letrozole. Would you mind if I privately message you to keep in touch with your journey? Its nice to have other people with similar experiences to me as :)

Did they diagnose PCOS based on just the USS results? There are diagnostic criteria for it. Women with PCOS who have regular menstrual periods have the same lifetime fertility as those without (although around 33% of women with PCOS will have anovulatory periods - they will be having regular menstrual bleeds but not ovulating every month). If you are having regular periods, your GP should request a day 21 serum progesterone level - it will tell you whether you are ovulating. If you are not having regular periods it is more tricky and then referral to a fertility clinic is the best option

Happy to share my story! I've spoken about it quite a lot of these threads. Diagnosed with PCOS around 8 years ago - very irregular periods (around 3 a year), weight gain, excess hair and blood tests showed odd hormone levels (i had high prolactin despite never having a child at that point).

I started controlling my symptoms with diet and exercise (low carb / keto / fast 800 style diets are v good for PCOS) for several years but then moved onto metformin when actively TTC (late 2019). It took around 4 months of 2000mg to start working - i started having regular periods but blood tests showed i still wasnt ovulating. This was all organised through endocrinology outpatient clinic.

At the same time as being prescribed metformin, i was referred to the fertility clinic. Our appt took around 6months to come through so we started treatment in summer 2020. We had repeat bloods, scans, DH had a semen analysis and then we were prescribed letrozole + monitoring (an internal ultrasound 2-3 times a week to track how the follicles were responding to the letrozole). I did a first cycle of provera to bring on a period and then took the letrozole. The monitoring showed it didn't lead to ovulation. Second course we repeated but on a higher dose and i did ovulate, but no pregnancy. Third cycle was unmonitored as it was clear i was low risk of OHSS on the basis of the first two cycles, and that one resulted in DD, who was born in 2021.

We are now hoping to have a second child - we were referred back to fertility clinic (although different hospital as we have moved house since then) in Jan, had initial appointment in April, have repeated all the scans and tests and have our next appt in July when we are hoping to start treatment again. Annoyingly i have a whole stack of leftover letrozole from last time but it has all expired now! When the appt letter came through, it said a 24 week wait time, but it has been much quicker than that. Maybe we are just lucky? Or maybe they over-estimate the wait times? I've lost 9kg in preparation - i really recommend trying to lose weight if you are overweight as that can also kickstart more regular cycles again.

Sorry that was long!! 😅I should also add, it was all NHS, not private.

I conceived with PCOS, I took 1500mg of metformin a day and it worked for me. After over a year of trying with no luck I became pregnant the month I started metformin. When TTC my second I started taking metformin the month before we ttc, and I got pregnant on our first try. The only other thing I did apart from metformin was to take conception vitamins from the month before too.

I have PCOS and have two children. I have actually conceived five times but dealt with some losses. I echo what PP says about doing your own research as the doctors I spoke to knew far less about it than I did. With my PCOS I had wildly erratic cycles but with change of diet and taking various supplements, metformin, NAC, magnesium etc I managed to regulate my cycles and ovulate regularly which obviously is half the battle with PCOS as you can’t even attempt to get pregnant if you aren’t ovulating!

Do you know if you’re ovulating at all or do you particularly long cycles? I managed to get might down to a regular 31-34 days without the help of doctors so it is possible.

I do think a lot of it is down to dietary changes so cutting out any refined carbs, sugar etc.

As I found out the wait for fertility referrals is forever and it’s worth putting a few changes to lifestyle in place beforehand and you might get pregnant before you even get to see them which is what happened to both myself and my twin who also had PCOS.

If I can be of any help please do let me know, I know how rubbish it can be. Good luck OP

@Hernamewaslola1 Unfortunately my cycles are all over the place, different every month, the GP said a blood test would be pointless.

@NoIncomeTaxNoVAT thank you so much for your long and detailed reply. I appreciate this so much and can't explain how nice it is to hear other stories! It's relieving to know that there are other options on the NHS if I have no results with Metformin, and the fertility clinic sound like they will be helpful!

@Overthebow Thank you for your reply, it's nice to know that Metformin was successful! I am on 1500mg Metformin too and i'm on week 9 of taking this, hopefully I have some luck soon.

I was same as you and got pregnant within 6 month of starting met. Good luck!

@Hopingforbetterluck My cycles are not regular at all, the longest has been 77 days, and the shortest 35. My periods are not what I would call a period either, I don't often see fresh red blood.

My LH tests do not usually get to a high reading, however this cycle I got a peak reading of 1.13 which is the first time i've ever got a peak reading. I would have been on Metformin for 6 weeks at this time. So I do not feel I was ovulating and I am really confused if I am now. I have read that the LH hormone does not mean you successfully release an egg. I brought Progesterone dip tests, but these have to be done on day 1 of your cycle, and then after ovulation, but unfortunately I really struggle to know when day 1 is as my body does not make it clean when I have come on.

My diet is healthy, and I am a healthy weight. But I do not take many vitamins so if you could let me know what would be good to take, that would be appreciated?
I currently only take Inofolic and Metformin.

Thank you for your reply! It's really lovely to speak to others with experience in this area!

@TheVolturi Thats amazing!! 6 months!!! You give me hope! Thank you!! x

@Megs26 Yeah absolutely if you ever need want to chat to someone who’s currently going through it also just pm me!

@NoIncomeTaxNoVAT Our stories sound very similar. I also was seeing great results from low GI diet. It brought my periods into the normal range for the first time in my life. I’m on my second cycle of letrozole. I ovulated the first cycle but bfn. I ovulated this cycle too and am currently 9dpo. I haven’t tested yet as I am putting of the potential disappointment as long as possible. I have no symptoms at the moment. Did you have any symptoms the month you got your BFP on letrozole?

I can totally relate to your anxiety around this. My story is quite similar - came off the pill at the end of 2021 and my periods then took a whole year to return at all. I went to the GP 3 months in and she did bloods (which were normal) and then referred me for a scan which, along with my absent periods and some slight acne, resulted in the PCOS diagnosis which I was totally shocked by as I had always thought it was related to being overweight and I have always been slim.

I tried metformin at this point which didn't help unfortunately so I stopped it but my period then did return eventually on it's own some months later. A month before getting my period back my GP referred me to fertility and said it would be a wait of a few months at least but it wasn't - they phoned me after 2 weeks and booked me in for my first appointment. It is a postcode lottery but some areas can be super quick so keep the faith!

My period returned in the small window between referral and the first appointment so initially they left me to it unmedicated for two cycles with just another scan and husband SA to see if things settled by themselves but my cycles were still all over the place so then I started on letrozole earlier this year.

I've had 2 cycles (haven't got pregnant but have ovulated) but they are still unsure of the right dose. Last time I took the maximum dose and still didnt ovulate until day 36ish of my cycle so they think I just ovulated of my own accord eventually and that the letrozole didn't really help. So now I'm taking a month off medication until I can speak to the consultant early August. Hoping my body has learnt to do it by itself now!

The clinic nurses have been amazing and I've been really monitored up to this point. It's just a rubbish journey with a lot of counting down the days, especially when others around you seem to manage to fall pregnant after a month or two of trying.

I'm going to be referred for IVF in December when it will be 2 years of trying.

Wish you all of the luck in the world ❤

My periods were similar to yours then and ranged from 70 days to around 30. I was actually only on metformin one of the times I conceived (resulted in a loss) as it made me quite ill and inositol regulated my cycle for me without the side effects. It probably took about three months to work though so if you’ve started it hopefully you’ll see an improvement soon.

of course I’m happy to share what supplements I used if it helps. I used to have apple cider vinegar with water on an empty stomach first thing. I took inositol (myova or zita west), NAC, magnesium, very high dose vitamin D and stuck to a carb free diet about 90% of the time but was by no means a saint and still loved a glass of red wine!

Your LH can surge as your body tries to ovulate so it can surge again and again as your body gears up to ovulate but doesn’t release an egg. The only way to confirm ovulation yourself without doctors etc is to track BBT and there’s apps that can help you plot a BBT chart and can really give you good idea of what’s going with your body/cycle so that’s worth looking into if you haven’t already. I found Fertility Friend app brilliant for that.

Hope that helps

Hi, sorry to hear you're having difficulties. PCOS is crap!! I have had a slightly different journey to previous posters.

I had irregular, heavy periods from my teenage years so I knew I probably had pcos. My mum has it too. After a year of ttc, with no luck, we were referred to gynaecology which took 6 months. I was so lucky that I saw the chief consultant who said he would do a laparoscopy to see what was going on. He had a cancellation the following day so I had the operation straight away! Under GA, he discovered mild endometriosis which he burned away, he tested my tubes using a dye, and, more crucially, he drilled my ovaries. During my recovery, I had a period. Then, I had ovulation pain, we had sex and low and behold, I got pregnant! That baby is now doing his A levels!!

Fast forward 2 years and we were ttc no.2. My wonderful consultant had retired and I was given a different gynae. He wanted to go down the more traditional route of losing weight, taking Clomid and metformin. All with no success. Eventually, after 3 years going back and forward trying follicle tracking, Clomid at different strengths, hysteroscopy, he repeated the ovarian drilling. This time, I did get smiley faces regularly on the ovulation stick but no pregnancy. It was at this point that he admitted defeat and told us our only option was private ivf.

We eventually had our dd after 5 years ttc using icsi. All the focus had been on my pcos but actually my dh sperm had deteriorated and that was an added issue. They hadn't considered this possibility so I actually had all that Clomid, an operation etc all for nothing as we would have never conceived due to the sperm quality. Thankfully icsi worked first time!

Now, as I enter perimenopause, my periods are actually regular as clockwork. Bloody typical.

All I can say is, best of luck. Take pregnancy vitamins, including folic acid, and look into measuring your bbt every morning. This really helped me when ttc as it gives you a break from trying when you can see you aren't in that window of opportunity that cycle (especially when it's a very long cycle, my worst was 95 days).

Good luck and sorry for the long post!

Hello! I don't remember any symptoms in particular except that im pretty sure i had implantation pain - i distinctly remember talking to DH on the landing and having such a sharp stabbing pain in one side that just lasted just a couple of seconds. But i know everyone doesn't get that anyway so i guess not really a good indicator. I didnt get any symptoms until 8 weeks when morning sickness kicked in.

@NoIncomeTaxNoVAT I had some twinges and cramping at 6/7 dpo and woke up in the early morning of 7dpo with stabbing/popping pains in my uterus which only lasted a few minutes. I have no symptoms since then. I usually have sore boobs by now but none this month.

I have felt all sorts of strange pains/symptoms in previous months however and always ended in BFN so won’t get my hopes up yet.

Thanks for letting me know your experience!

@Apat10 Thank you for sharing your story - this does sound similar to mine! Its sounds like once through to the fertility clinic, the support will be there which is so helpful to know. Its crazy how different everyone's bodies react to the medication!

I really hope you all the bets of luck for August and I hope they find something that works well with your body! <3

@Hopingforbetterluck Thank you so much for this, this is really helpful! I have not taken any NAC, magnesium so will look into starting these for sure!

@Whyisitdarkalready Thank you for sharing! I really appreciate it and find any and all experiences helpful.

I've had two children (and another on the way) with pcos, all conceived in less than six months. I ovulate every month now.

I used to have irregular periods, weight management issues etc.

I started taking inositol years ago and I think in about three months I noticed a difference. It made it possible to lose the bit of excess weight I was carrying, by dieting like a 'normal' person. My periods also regulated. Give the inofolic a bit longer to work 🤞

Keeping a healthy weight is vital with PCOS, as excess weight affects the testosterone/insulin cycle which is what pcos is all about. Obviously a healthy weight is trickier to maintain than for normal people, but that's where the inositol comes in. You still need to diet, but it should be easier to shift weight. If you are already a healthy weight, obviously this bit is not relevant to you. However I was BMI 24 or so, but whilst not unhealthy in a health risks sense, there were definitely extra pounds! Losing them helped. Many people find low carb particularly helpful.

In terms of conception, I really recommend tracking bbt if you are able to. Even if you can't do it perfectly because of shift work or similar, you will hopefully get enough temps in a cycle to be able to identify a temp shift and see if you actually ovulate. Ask for help on here if you get stuck with interpreting it - people are very knowledgeable and helpful about bbt. Recommend Fertility Friend as easiest to interpret.

You might also want to try avoiding or seriously limiting alcohol. It can increase oestrogen, especially in pcos sufferers who already have hormone issues, and increased oestrogen can affect progesterone. I think this may vary a lot person to person though.

Good luck!

@Gingerwright thank you for all of this helpful info! Is inositol and Inofolic the same thing?

I started tracking my BBT about 2-3 weeks ago, so I am waiting to see a pattern. I am still trying to wrap my head around this so when I have a full cycle I will definitely post this for support! Thank you :D