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.

1 in 5 women have PCOS. It may complicate TTC slightly but for most women it's not a barrier.

I was diagnosed 10 years ago. My main symptoms are irregular periods and acne.

It took 12 months to conceive DD, I had 3 early miscarriages. There is a slight correlation between PCOS and miscarriage but for DD I was treated with asprin and heparin after a blood test showed low clotting factors, so for me it seems unlikely to be related to PCOS. As I had 4 pregnancies in 12 months conceiving wasn't the problem!

If you are having periods you are likely to be ovulating, OPKs show the body trying to ovulate but don't confirm this actually happened. As you are likely to be ovulating less frequently and less predictably it would be sensible to just dtd every other day from CD7.

The best advice (so hard to follow, admittedly) is to try and hold back the TTC crazy and just enjoy the sex. You are doing the right thing pushing for investigation, but 7 months is still pretty normal.

@Isthisfinallyit thank you.

That sounds like you had a really difficult time of it. Despair is just the right word for what I was feeling and honestly it's only the words of some random women on the internet that I don't know being kind enough to share that's made it any better.

I wondered if anyone had gone private to a fertility specialist and just just bypassed the NHS altogether? I'm such a big NHS advocate normally but I'm so upset with what's happened I just want to do everything I can to conceive now.

@PPEcompensatoryeyeliner thank you for explaining that. Yes I have a period on the dot regularly every month and the CB LH tracker thing was telling me that I have a surge every month at the same-ish time give or take a day. But I now know that may not be accurate so it's a bit confusing. I'm extra emotional today because AF made an appearance.

You're right too in that it's so hard to not go obsessive over ttc. I never really thought about having a baby until recently and now it's all I can think of. I feel like I'm going mad.

Hi sorry you are feeling so down about it. I hope my experience cheers you up! I'm slightly overweight but not obese. Never had regular periods so trying to chart ovulation was a nightmare. I used to go 18 months without a period. It took me nearly 6 years to conceive but I am absoluted convinced that what worked for me was taking a high dose vitamin B from H&B ...think its called Busy B but it was pretty high. The month I started taking it I conceived on day 48 or 60 or something crazy cant remember it was a few years ago. I've had 2 successful pregnancies. I've also found that when I am a few pounds lighter I have more regular periods but that's probably not relevant to you, WIshing you all the best

I never really thought about having a baby until recently and now it's all I can think of. I feel like I'm going mad.

I completely know what you mean and empathise. But I think the anxious hum of TTC can be quite counterproductive, I'd really suggest you find a way to step aside from it and live your life while dtd regularly. You are young and have probably 15 years of fertility ahead of you, it be ok.

In hindsight (haha) I wish I'd been kinder to myself. I did lots of cool stuff aged 29 I didn't get to enjoy because of the baby obsession.

I have PCOS and conceived naturally (when older than 35 :)) within a couple of months of trying. My BMI is in the normal range, I have heard though that having higher BMI is one of the factors that may make it harder to conceive naturally with PCOS but I don’t know how true that is. The GP who diagnosed my PCOS initially was awful (told me diagnosis over the phone bluntly, told me it was just something to live with, and told me some awful stats about chances of infertility, then he told me to lose weight, then he checked my BMI on file and was like ahh, no don’t do that you are already close to underweight.

I spent a lot of years worrying quite a bit about infertility. When I started TTC I went to GP who was amazing and had plans to send me for 21 day bloods and an ultrasound to check things out. He said ‘there is no point TTC for a year at your age if we then find out you haven’t been ovulating, because you don’t have that much time to waste so let’s start the tests now’ - I was really pleased that he took it so seriously. In the end I was pregnant before they had a chance to arrange the tests :) ! Good luck OP - others have already said this but don’t forget that although PCOS can affect fertility it doesn’t mean everyone who has it is infertile.x

OP I've gone privately. You can only be seen on the NHS for fertility after you've been trying for quite a long time or you've had a number of miscarriages. I didn't want to wait so I went private. Just be aware though that while a consultants fees are say £250, that doesn't include the fee for the ultrasound or any other tests they do. Those are additional.

Sorry OP, just to add that I am a fair bit older than you so that was meant to be a reassuring post (just realised the bit about GP saying ‘you can’t waste a year’ might sound a bit panicky! 30 gives you a lot of time, although I totally understand why you might not feel that way right now.

I have markers for PCOS too (bloods and ultrasound). For me the main symptom is irregular and longer cycles. I did eventually cave and get an Ovusense which confirmed I was definitely ovulating each cycle, even if they were a bit all over the place.

I was supposed to be referred to start fertility treatment, just before the pandemic happened, so of course got postponed.

Then naturally conceived during the first week of lockdown (😬) and now 18 weeks pregnant. It took us almost a year and I think a significant factor that helped was moving to working from home for the pandemic and not doing the long commute back and forth to London anymore on top of long working hours, my body (and mind) was less stressed.

I have PCOS - not sure how badly I'm affected - but have three boys.

My cycles are long, irregular (when not on the pill) and I have had ultrasounds confirming both ovaries have a lot of cysts.

However I have also conceived quickly in all three cases, cycle 1 with 1, cycle 4 (which in reality was six months) with 2 and cycle 4 (five months) with 3. At ages 29, 31 and 35.

The hard part for me was working out that I was ovulating and when.

My PCOS symptoms were absent periods or very long cycles, a lot of body hair 😫 and when I was scanned during IVF so many cysts that I once walked in to an unknown sonographer who looked at my name and said, “oooh, I wondered when I’d get you - I’ve heard about all your cysts” 😏

My consultant said that OPK were no guarantee I was ovulating - and even though they fitted with time of next period, mucous, temperature and damn bloody salt crystals (damn you, TTC!) - my egg quality was probably poor anyway.

It took me 2 years to conceive naturally - missed miscarriage. Nothing for 12 more months - but then IVF which was successful first time - though I went down to a single blastocyst and nothing to freeze.

I know that’s not a happy, “oh I have PCOS and was fine” tale, but I hope it’s reassuring to know that there is help.

I was dxed with PCOS when I was 19, I didn't have periods very often, between 6-18 months between cycles then hideously long and heavy periods. I also have the weight and excess body hair. I had to take clomid to conceive 2 DC, took three cycles each time. I had a surprise pregancy three years after my 2nd DC was born.

If you have insulin resistance, you can be prescribed meteor in to help as well, but it's usually those who have weight issues who have the insulin resistance. This would be DXed through blood tests.

Good luck op, try not to panic just yet.

Wow thank you everyone.

There certainly seems like people have had a range of options and help. That statistic of 1 in 5 has really surprised me because that means I must know loads of women with it but it's just never spoken about.

@onedaysoonish that's a good tip about the costs. I'm ok with paying what I need to but it would be good to get some idea of outlays before I launch in. If I call them for a consultation will they tell me all of that? I don't want to get to the end of it all and be served with a 20K bill or whatever. DH does have private health insurance for us both through work, I wonder if anything could be covered on that?

I'd ring the insurance provider to ask if it's covered. They don't usually cover fertility stuff but i would think they would cover a consultation with a gynae and an ultrasound to look for the cysts and then probably a consultation with an endocrinologist because that's to do with PCOS rather than fertility. Fertility stuff can get very expensive if you start doing IVF etc (which I think is why insurance doesn't usual cover it) but this will give you an idea about prices for other things:

listerfertility.co.uk/about/prices/

@onedaysoonish I will give them a call tomorrow and see what they say.

I never thought I'd be like this but I'd really like to be on a baby name thread getting slated for all my naff choices soon Although I am taking PP's advice to be calm and live a life outside of ttc

I guess you may have worked out by now that OPK is just ovulation predictor kit! They may be ccalled something else now. They are definitely not advised for contraception in anyone with PCOS becuase of the irregular nature of ovulation, but Personally, I found they had a use as did seem to suggest the time that I ovulated when combined with charting my basal body temperature each morning. I had a couple of cycles where it didn't look as though I ovulated so even though we were having sex every 2/3 days throughout most of those months, I didn't get my hopes for pregnancies during those months. But it's hard not to get hopes up each time you think you've got all the timing of sex right and done all the right things with diet, exercise and vitamins etc. I have to say, though, with DS1 I just knew I was pregnant quite soon after conceiving so already knew the test would be positive.

Please don't worry,, you will be fine, it may just take a bit longer. You are young, it will be OK but you may need lots of patience and I know how hard that it is when you are obsessed with becoming pregnant. Take care.

@december2020 An ovusense seems like something I could invest in. Why is that better than just a strip test? As in why can it tell for definite that you're ovulating where a test you wee on can only detect an LH surge

@december2020 An ovusense seems like something I could invest in. Why is that better than just a strip test? As in why can it tell for definite that you're ovulating where a test you wee on can only detect an LH surge

PCOS diagnosed in 2006. Basically had a period maybe once every 5 years. So fast tracked to IVF via Clomid (didn't work) and now have a 7 year old from that and naturally conceived surprise of a 4 1/2 year old.

So babies are no longer an issue.

But is there any point looking into any further treatment? Would there be benefits that I am missing? Back then I was told only real issue would be probable probs with fertility.

@AdditionalCharacter just correcting your autocorrect for OP meteor = metformin

@Lancrelady80 I'm not sure. I think many people have horrid symptoms that they need managing. I know that some people can have just awful periods.

Personally my symptoms are just very very light periods. I'm just worried about fertility mostly on a personal level.

I have bad insulin resistance /androns with near total hair loss on my top of head and have to shave my face daily. I'm on metformin and take inositol daily. My sister is very similar to me but managed to conceive using ovulation strips and losing a lot of weight. She had gestational diabetes despite losing the weight which can be common in pcos.
I couldn't conceive and we adopted. I then tried to get my hormones under control with the gynecologist, was prescribed hormones and ended up with a pulmonary embolism. So now I am still fat, bald and hairy but with dodgy lungs!
So a mixed tale, suspect our other sister has it too but she conceived without trying twice!

also mine started with light periods then they stopped around age 26.

Pcos, had first at 33 accident and it was after I lost weight and did lots of excersise. Second time round, metformin.

Some fab posts here but in the end it's diet and some exercise that will be your best friend's. Also healthy eating, juicing etc.

I'm probably a bit of a phoney as I was diagnosed as being 'borderline PCOS', but I pushed for bloods and a scan as I was getting lots of dark hair in random places and bad acne. They said I had 12 follicles which is the exact amount to call it PCOS, although many women have 30+ follicles.
I also have endometriosis and had to have endometrial ablation via laparoscopy, but then did concieve 6 months after that. That was 3 years ago and I'm now having my second child too, so don't let it worry you re fertility. Good luck!