Anyone here with PCOS? (Questions)

[AlyTab]

So me and my fiance are thinking of trying for baby number one. Problem being that I've had irregular periods for the last 6 months or so now.

Now I haven't seen a doctor yet but I do have an appointment to see a GP on Tuesday. A few people have suggested to me that it could be PCOS but of course I won't know until I've seen the doctor.

Mostly I would just like to ask a few questions from women who have PCOS or know more about it if it turns out that this is why my periods just suddenly became irregular. If you could answer any of these questions I would appreciate it so so much :)

How difficult has it been/was it for you (and your partner) to conceive?

How long did it take you to get a correct diagnosis? And who diagnosed you?

Did your symptoms appear gradually or did they just appear all of a sudden?

Are you taking any medication to control your symptoms/regulate your periods?

Is it normal in people with PCOS to have regular periods and then all of a sudden, become irregular and have a lot more time in between periods? (My last period ended about 45/46 days ago or something and this is how it's been for 5/6 months)

I would so appreciate if anyone could answer any of these questions at all :) I know I haven't been diagnosed but I did think for a while there that I was going into early menopause (I'm 23, and also jump to the worst conclusions... )

Sorry for the rambling! Thank you :) :)

When you do get your periods, are they heavy or light? What colour is the blood?

I'm curious because I'm becoming more and more irregular and today I got my period after 42 days and it is very watery and pinkish.

Do you have any other symptoms?

To answer some of your questions, periods were always irregular and heavy from when I started at 13. Was diagnosed at 17 after I was hospitalised with pain from a burst cyst.
I was extremely lucky to conceive naturally twice very quickly so PCOS definitely doesn't always mean infertility or trouble conceiving.
I am on the depo injection which has stopped my periods altogether.

Definitely worth talking to your gp.

Pcos is diagnosed if you have several of the main symptoms, for me it was irregular periods, ovarian cysts and higher than nor all testosterone level

It took 3 years to get pregnant, my periods became much more regular when I went on a low carb/low GI diet and upped my exercise it was when I regained a 28 day cycle that we were able to get pregnant.

Hello,

Shall try and answer best I can!

We conceived straight after I came off the pill, but sadly lost it at six weeks. That was 16 months ago and my periods went totally haywire ever since, although probably more likely pcos was exacerbated by the pill (I was on it for endometriosis). Haven’t managed to conceive since because my hormones have gone loopy with migraines, spotting and 90+ day cycles but I think I’m at the more extreme end of the spectrum - lots of people with pcos (like my Mum) have a slightly more regular pattern and conceive easier.

I was diagnosed with pco when I was about 16, but only with pcos in October last year, aged 32. Before the pill/miscarriage I was on the other side, that is - my periods were every two weeks. It’s only since then I have been as irregular as I am and I don’t know what caused it: mc, pill or both.

So it can just happen out of nowhere, but quite often it’s started by something, if that makes sense. I got referred to the gynae after a year for ttc and it was then that diagnosed me. From then on we’ve been meeting with the fertility consultant, I’ve had ovarian drilling and if nothing happens in three months I’ll be on drugs to induce ovulation. The pcos diet is a great thing, check it out if you get a mo and don’t worry! It’s getting more and more awareness.

I have PCOS and will try to answer your questions as best I can...

How difficult has it been/was it for you (and your partner) to conceive?

DS1 was conceived after 16 months of trying and 3 rounds of clomid.
DS2 took 17 months and for the last 2-3 months of that I was on a low GI diet and taking metformin. I also had acupuncture.

How long did it take you to get a correct diagnosis? And who diagnosed you?

I was only diagnosed when I was trying for DS2. I was diagnosed by a gynaecologist because of my LH/FSH ratio, irregular periods, difficulty losing weight and hair growth. I also had some cysts on an ultrasound scan.

Did your symptoms appear gradually or did they just appear all of a sudden?

I had irregular periods from when I came off birth control to TTC DS1. I was 28 and had been on BC since I was 16. I remember missing the odd period before that but didn't think much of it.

Are you taking any medication to control your symptoms/regulate your periods?

Not at the moment but we're only just starting TTC #3. I'm hoping a low GI diet will be enough but if not I'll ask for metformin again. My periods aren't completely regular but I'm still breastfeeding DS2 which can make them irregular. The last 2 cycles have been consistent though so I'm feeling hopeful.

Happy to answer any more questions you might have, I remember being overwhelmed by trying to figure it all out.

Ok, I'll try and answer what I can:

I've got 2 DC, the first took 4 periods to conceive (when mine were more regular), the second something of a surprise as I hadn't had a period for 6 months.

I've had irregular heavy periods since starting them - cycles between 2 weeks apart and 7 months apart - but was on the pill for a number of years which regulated them. They were somewhat settled (every 4-6 weeks) between coming off the pill and conceiving DC1. Symptoms including abdo pain and more body hair increased massively after DC1 and I only had 6 periods in the nearly 3 years between having DC1 and conceiving DC2.

When I asked for investigation (after DC1) it took probably 6 months. Diagnosis involved blood test for hormones at GP, referral to gynaecologist, 2 more blood tests and an ultrasound then a follow up with gynaecologist to confirm. You need to meet 2/3 of irregular periods, high level of androgens and polycystic ovaries to be diagnosed with the syndrome.

Medications: norethisterone every 3-4 months if I've not had a period to induce withdrawal bleed. I was advised I would need clomid and possibly metformine when we wanted TTC. I've previously needed tranexamic acid to stop heavy bleeds.

And yes - I have had times where periods have been more settled and times when they have been all over the place. They've been most regular when I've been at a healthy weight.

Oh, and a ratio of 3:1 LH:FSH (not sure which way round) levels on the blood test is suggestive of PCOS, apparently.

Wow thank you so much! This honestly helps me a lot.

In terms of other symptoms, I'm not really sure. I recently had a breakout of spots all over my shoulders, and I do have quite a lot of body hair but I shave it off. I have lots of other symptoms but I don't think they're related to PCOS.

My cycle used to be around 28 days give or take a day or two, then out of nowhere, they became irregular and I have no idea when they're coming/If theyre coming. Apart from one period that lasted only 2 days and was very light, my periods last about 5 days and are fairly heavyish same as before.

Last year I did have to go to A&E for a burning, cramping pain somewhere between my pelvis and bottom rib (side of my stomach basically), and it was very painful. It subsided over a few hours however and the doctors don't know what happened. Has anyone experienced this before? Or is it not related. It was agony

Last period was 46 days ago and no sign of one happening either

*ended

Sorry to keep adding after my self on this thread but I just realised it's actually been the past 9 months my periods have been irregular. After looking back over period logs and trying to figure out when I had a period (since I forgot to log them), I've had 4 or 5 periods, I'm a bit fuzzy with the timeline. Anyway, thank you all for answering my questions :)

Here's my experience hope it helps!
I was diagnosed aged 18 with PCOS following years of hormone imbalance, number of cyst, heavy periods and then they stopped all together, lots of body hair and excess sweating😣.

I have one wonderful daughter which took around 6 month of trying... So not too long! Considering I wasn't having periods before that. My doctors sent me for a scan to confirm the PCOS.
When trying to conceive my GP advised a strict diet and a number of hormone tablets which seemed to work!!
Hope it helps... And good luck 😀

Thank you all very much! I actually got my period today too! 51 days in a cycle it's up to now, seems to get longer every cycle.

Does anyone get night sweats/hot flushes? I get them pretty badly but I have no idea if it's related. Thanks again :)

Yes I suffer with such bas sweats!! Im not sure how related this is but I am with you there

Thank you Jodie, you've been a great help :) Glad to know I'm not just going crazy!

Hi - I have PCOS and Endo - hopefully you might find this helpful

I have 2 wonderful DS. Both conceived after about 9 months of trying. DS1 I was unaware of both my diagnosis but with DS2 I had been referred for VERY heavy, painful and irregular periods, pelvic and LBP and painful gynae exam. I went privately and was diagnosed in 2 weeks via MRI and blood work with PCOS and endometriosis. My Gynae Consultant said my chance of conceiving naturally was slim so at that point we kinda gave up "trying" and just had sex because we wanted to if that makes sense? I was booked in to have the endo deposits removed and also ovarian drilling to try and improve my chance of conceiving but I happened to fall pregnant naturally before this.

My periods have always been irregular since I first started as a teenager. Went on the pill to regulate them at 15. Came off the pill at 30 to TTC for DS1. Had one period in 9 months. Similar for DS2 but had a period roughly every 10 weeks or so but much heavier and more painful than I experienced when off the pill the first time round

I have had the coil fitted now and I have to say I have seen a significant improvement in my endo, and very minimal bleeding now if any.

I am not anything specific per se for the PCOS but I am aware it is an endocrine dysfunction and and my risk of type 2 diabetes etc is a bit higher so I do exercise and try to eat healthily.

Hope that helps OP!

Thank you v much TJ2503. I really appreciate you sharing your experience. Good on you and your partner! I wish me and my fiance could do that but it can be difficult for us to have sex due to me finding it painful and therefore having to stop sometimes. It's very depressing actually :(

I've been doing a lot of research on PCOS. I had no idea that the uncontrollable, very strong cravings for sugar and carbs were related to PCOS. I've had this for quite a while now and it certainly would explain a lot. I actually have to keep sugary stuff near my bed every night. Also the night sweats and hot flushes.

Thank you all v much I really appreciate it :)