To ask about your PCOS experiences?

[myfavouritefudgecake]

I have just been told over the phone that my blood tests show markers for PCOS.

This has been a long battle for me to even get taken seriously after having light periods for months and no other symptoms. I was told that this was nothing to worry about and totally normal but I just knew it wasn't. Anyway, finally convinced GP to refer me for blood test and she rang me to tell me that everything fine but hormone imbalance indicates PCOS. So, I'll get a scan (ultra-sound?) to confirm and go from there. I'm very upset because DH & I are ttc and having no luck (cycle 7). I do ovulation tests every month and get the smiley face, so I do ovulate I think. Now I'm just so upset as I feel like conceiving naturally will be off the table? I'm 30 if that makes a difference.

I wanted to know who else has been through this? Did you conceive and did your symptoms get worse/better? I don't know anyone with it in RL would just like to hear from some women who have experience.

I was diagnosed with PCOS 10 years ago.

First of all, it’s a complete myth that PCOS makes you infertile. It might mean it takes longer to get pregnant, but for most women with PCOS it is possible. If you’re ovulating you have a chance.

For symptoms, there is no cure unfortunately, but there is plenty you can do to symptom manage. Weight control through good diet and exercise is really important, which I know sounds like one of those “just go away and lose weight” excuses, but it really can help. For other symptoms like acne or excessive hair there are some treatments available, but you’d need to speak to a doctor about it.

Look up the PCOS charity Verity and read through some of their resources. Verity are very active on Facebook, and they have some really good local groups you can join to meet other women with PCOS.

Depending where you are in the country you might also be able to be referred to a specialist. There is a clinic based at Coventry hospital for PCOS. You can always ask to be referred to endocrinology as well, don’t be fobbed off with a gynaecology referral. It’s more all encompassing than gynae.

You’re going to be ok, try not to worry. It’s a crap thing to have but there’s lots of support out there.

Did your gp confirm ovulation from blood test? smiley Faces don’t actually mean you are ovulating, just that you have increased LH levels and maybe estrogen if it’s the clear blue one. Bloods/ scan can easily confirm ovulation is actually happening

@TeaSoakedDisasterMagnet

Thank you so much for your reply. Good to know about the charity because I had no idea there was any kind of support out there and I feel kind of lonely. I feel like there's such a mix of information out there and it's so hard to know what the truth is about fertility chances. I didn't even know that there was any such thing as a specialist, rather than just a gynaecologist.

I feel really upset that nobody took me seriously.

@Jubaju no the gp didn't mention anything about it in relation to my bloods. I do the CB test throughout my cycle and it always gives me a smiley around when I think ovulation should happen so I thought it was, but maybe not

Just conceived second baby, with PCOS and dodgy ovulation, helped by taking 4mg insolitol every day.

Have a read here and in google, but it's excellent stuff, related to a b vitamin, absolutely safe, regulates ovulation like nobody's business.
www.nutriadvanced.co.uk/news/benefits-of-myo-inositol-for-polycystic-ovary-syndrome-pcos/

I get mine from myprotein.com.

I have PCOS and after a year of TTC, I was prescribed Clomid. Got pregnant during the first cycle and now have two year old DD. Just been prescribed clomid to try for number two and hoping for similar luck this time round. PP that said the ovulation kits aren’t necessarily accurate is right - definitely get tested by your GP for ovulation. If not ovulating reliably, Clomid can be a big help. Good luck OP!

Hi OP - I have PCOS was diagnosed about ten years ago. They will do an internal ultrasound (a bit uncomfortable but nowhere near as bad as a smear) to look at your ovaries. They will be looking to see whether you have cysts in them. A lot of women have PCOS - I think it's 1 in 10 women. I believe it can affect fertility but that doesn't mean it makes you infertile! I have conceived naturally and very quickly on a number of occasions. I've had miscarriages but that's not due to the PCOS. Am also currently pregnant and seems to be going well so far - am having some extra hormones but again that's not due to PCOS. Please don't think you have an infertility diagnosis now because honestly that is just not the case. x

I second Verity for information. Also just knowing there are so many of us with PCOS helps when diagnosis is new. I was diagnosed about 23 yrs ago and have a 19 yr old and 11 yr old mooching about the house! I took Clomid all those years ago but then had my daughter after being prescribed metformin for t2 diabetes- she was a bit of a surprise :-)

Also I was told the ovulation tests don't really work if you have PCOS - they aren't accurate. You can tell if you are ovulating through noticing change in discharge - the egg white means ovulation.

I am 47 and was diagnosed with PCOS over 20 years ago from blood tests and ultrasound. I am not up to date with current advice around treatments but then the combined pill was basically what you were put on to regulate hormones and periods (it helped me a lot, as had bad skin and hirsutism) . I started TTC when I was 29 and it took about 5-6 months. I did temp charting for a while as a way of timing things right and seeing if I had a peak, which I seemed tohave most months but the day varied a fair bit. They didnt have OPKs then but they did 2 years later when I TTC second baby. It took me a bit longer that time - 8 months. That was timing things exactly right, but the OPK showed that I probably didn't ovulate each month although I did have periods each month.

Both pregnancies were normal. I am the slim PCOS type, maybe that makes a difference, as the women I know who had to seek help with conceiving were all a bigger build. I think some used metformin and one used clomid (and had twins!!)

Please be positive, there is a lot that can be done!

I was diagnosed when TTC DC2 (managed with 1 round of clomid) and then DC3 took a little bit of weight loss to kick start things, so although fertility can be impacted, it's not a given that you will have problems.

Ovulation tests aren't recommended generally for women with PCOS as our hormones are messed up, but I believe natural tracking methods work - I'm sure the TTC boards will have loads of info and help re that.

Sadly, the best thing you can do (for both fertility optimisation, and general symptom management) is to keep your weight at a healthy level. Sensible diet and regular exercise, albeit boring, is the best thing to do . Low GI seems to be the "best" way of eating, but for losing weight, the best diet/way of eating is the one you can stick to long term, which rules out most fad diets.

Gynaecologist if you're looking to get pregnant, endocrinologist otherwise, are the specialist referrals you're looking for (dermatologist for skin and hair problems). As well as the specialist clinic at Coventry, there's also one at (I think) Kings in London, which is fairly new.

@CurlyhairedAssassin thanks that is interesting.

Just a couple of questions - what is an OPK? I've seen that term a lot but never really known what it is.

And what's the slim type of PCOS? Are their different types of diagnosis?

I have probable PCOS. Long cycles, rare ovulation, beard, struggle to shift weight.

I have a 3yo DS and are trying for another DC now. Would echo pp about myo-inositol. I've just ovulated for the first time in 8 months and I've been taking 4g a day for a couple of months. Also folic acid.

PCOS can feel a bit bleak but it's not the end of the world. A low GI diet has also really helped me regulate my weight.

Good luck.

Thank you everyone for responding. I have read each response multiple times and it's made me feel quite emotional that I'm not alone in this! And it's really filled me with hope hearing about all your DCs.

I'm at a decent weight. Could stand to lose the 4lbs I've put on during in lockdown mind. But I have a good BMI and am a bit of a gym goer in normal times and can't wait to get back to it.

I've been hearing about loads of drugs or treatments that I've never heard of before so it does seem like there's options that i didn't even know existed.

I've ordered a pack from Verity and am going to have a good read through.

I have pcos. Had a baby 5 years ago (not planned) didn't know there was anything wrong then although I've always suffered from irregular periods and acne. Been ttc now for nearly three years, had 5 rounds of clomid which made me ovulate but didn't conceive. Now been on metformin for about 4 months and still hoping for that bfp.

It can happen it might just take a little longer. My consultant actually told me my ds was probably down to pure luck. Which I found quite upsetting as it kind of implied that it's not Gona be easy to conceive again.

Good luck on your ttc journey ❤️

I have pcos and it really is quite common once you start talking to people about it. Got diagnosed as a teen and felt like a kind of alien because no one i knew had it and it was scary to face that. Thankfully I've had 3 children conceived naturally. I know others who have struggled though. 7 months doesn't seem that long to have been trying though so dont give up hope. Wish you the best of luck, it will be ok xx

I’ve just had an ultrasound come back showing pcos, waiting to get blood tests back to confirm. I just posted today about how dismissive the gp I just spoke to was about giving me any treatment for the symptoms. Anyway, I just wanted to come on and say that mine seems to be related directly to my weight. I didn’t have any symptoms at all and didn’t realise I had it until I had my two kids and my weight crept up after. I conceived naturally straight away with both (I think I would definitely struggle to conceive now) so I do believe it is absolutely possible to conceive with pcos. My friend has pcos and conceived twins through ivf and she didn’t have more than one period a year, hope it works out for you, don’t lose hope.

My sister has PCOS and conceived her baby only after 3 months of ttc, no drugs involved. She lost a bit of weight before ttc and she has a healthy lifestyle.

@Snowdropfairy85 that dismissiveness is what I've felt too. It's like they couldn't take my word for the fact this was very abnormal for my body... it was always "I'm sure it's fine" or it's "probably IBS"

It’s awful isn’t it, and It’s not just how you’re suffering now- it’s the increased risk of serious health conditions and certain cancers down the line that really should be taken seriously.

@Snowdropfairy85 yeah. I'm mostly worried about fertility. Feels like everywhere you look people just sneeze and fall pregnant and I'm anxious to get started on any treatment they can offer me.

I just don't know if they will start me on any interventions yet because I'm only on 7th cycle.

PCOS is really common. Most women with PCOS can still conceive naturally, and if you do need fertility treatment there are a lot of options to treat it.

I have PCOS and I have three children. It doesn't mean you can't conceive, especially if you have evidence that you are ovulating! It did take us over a year to conceive #1 and 2yrs for #2 and 3yrs for #3 so you may just have to be a bit more patient than other people.

The only thing I did to help was to lose weight. It did work. I was at the brink of giving up each time it happened so be prepared for it to be tough going.

Good luck!

I have severe PCOS, type 1 diabetes and a thyroid problem. I did get pregnant with different fertility treatments (clomid, Gonal F coupled with self insemination, IUI and IVF all made me pregnant) but miscarried a lot (probably due to long term type 1 diabetes, even though I'm very well controlled). Only ivf kept me pregnant but I firnly believe if I'd only had the PCOS I would have been done with having children years ago. Don't despair, chances are really high that you will get pregnant, it might just take a little bit more time and otherwise a medical helping hand.

I didn’t know I had PCOS until after I’d had twins conceived as soon as we started trying naturally . Am now on metformin. It seems getting pregnant is different for everyone with PCOS. I have found exercise, vitamins (I take the boots multivitamin that has selenium/chromium) and low GI helps.