PCOS - support

@LavenderSweetPea thank you for the reply I will look into these 😊

@Tigger1116 I know it sucks, and PCOS makes it hard to get pregnant and hard to lose weight (been there!), but also the addional weight makes it hard to pregnant as well so it compounds the issue.

Can you afford to go to weightwatchers or similar while you wait for your referal? If you manage to get down to at least 30, but ideally 25 on the BMI you might find your periods sort themselves out. Anything you can do to really focus on the weight loss will improve your chances.

I'd also recommend the infolic alpha supplements - they can help with regulating your hormones a bit which may not only help you with ovulating and conceiving, but also your body might find it a bit easier to loose weight.

@Overthebow yes a weight management program but it’s a year wait

Yes that’s pretty common. It’s because weight is a big factor in fertility in lots of cases. Have they given any advice for weight loss?

I need some help I was official told pcos in August and my cycles 38-40 53 currently on day 65 spoke to the doctor today apparently they can’t give me anything to help me get pregnant and because my bmi is over 35 I can’t go for fertility treatment 😭 I don’t know what to do

Pcos sufferer here aswell. Have had irregular periods since I started them. The longest I went without a periods was 5 months. I have been ttc for 1 year . Have been on metformin 1500mg for 3 months by a private gynaecologist. Had my first nhs consultation, has my blood test done on cycle day 2 had my hsg done a week later (hsg is where they check that your tubes are unblocked ) the experience with nhs has been absolutely fantastic. I was referred to Hammersmith hospital. I am waiting for my next appointment in October , hopefully in that appointment they will talk about my next steps. Hang in there is will happen soon. I have a friend with severe pcos and she is pregnant with the help of clomid. Eat healthy, keep positive and I am sure we will get our bbf very soon. Lots of love x

I have PCOS and have 3 children naturally. What worked for me was going low carb in the run up to ttc and exercising more. Definitely look into dietary ways of boosting fertility and regulating cycles. Good luck. Oh , I also bought one of those electric clear blue cycle monitors (that specifically say not to use with Pcos! I ignored that and found they still worked in identifying fertile times!)

@Megs26 I have PCOS after coming off the pill. I never had a problem before I went on the pill, but I was on it for 10 years and when I came off (Sept 2020) my period never came. Blood tests and a scan meant I was diagnosed with PCOS and I was referred to NHS fertility services in 2021. Unfortunately, I am in London and the waiting list is insane, my appointment isn't until next year and I'm not getting any younger!

I went privately in July 2022 (nearly a year of not having a period) and was prescribed letrazole, I'll be honest it's not cheap but I got pregnant after 5 months (in December 2022). Unfortunately the pregnancy was ectopic and ended in an early loss. However, one of the nurses in the hospital when I was being treated for the ectopic advised me to buy something called infolic alpha to assist with the PCOS. It's basically myo-insitol and a couple of other supplements, it's not particularly expensive (compared to fertility treatment) and you don't need a prescription. I was basically willing to give anything a go as we couldn't TTC for 3 months while I healed from the ectopic and it says it takes about 3-6 months to start working.

Anyway, I very quickly had my cycles start, I was ovulating (positive OPKs) which was a miracle in itself, and then once we could start TTC again we did and then on the second try I got my BFP a few weeks ago! Even better I went to the docs for a checkup 3 months after my ectopic to make sure all was ok before ttc again, and my blood tests came back normal (before AMH and testosterone were sky high, classic PCOS hormones) so something has changed.

It sounds to me like you are dealing with a bit of post-pill syndrome rather than regular PCOS. I believe you can heal from this, give infolic alpha a go, make sure you eat plenty of protein, and take a conception supplement and see how you get on while you wait for your NHS appointment, and before you start spending any serious money on private treatment. It can happen!

Hi! I was diagnosed with PCOS about 6 months ago, after 2.5 years of ttc and fighting with the gp for a referral to the fertility clinic and checking me for pcos.
I already have 1 child so they didn’t see much point in referring me because I would have to self fund, even though I was happy to do this.
I went to see a gynaecologist privately who prescribed metformin and I’ve made changes to my diet, which has helped a lot! I actually fell pregnant after just 4 weeks on metformin but sadly ended in a chemical at exactly 5 weeks.
i’m now on cycle 2 since the chemical and 3 dpo so praying I get lucky again

if not we are waiting on our second fertility appointment, my partner has to have a semen analysis done again first which is still a 4 month wait away for his appointment yet so it’s going to be a while but they’ve said the option for us would be letrozole, I’m just so scared it’s going to take another couple of years but trying to remain hopeful!
hopefully if the metformin helped so quickly it can do the same again.

not sure if any of this was helpful but thought I’d share my journey so far

I think inofolic is inositol plus folic acid, so yes!
Hopefully the bbt will give you some answers 🙂

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!

@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!

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.

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!

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

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 ❤

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