To feel PCOS not taken seriously

[Yellowdaff25]

Hi all, I will try and condense this so it’s not
too long!

I am 34, I have a 5 year old and have been ttc my second for 14 months now.

I was diagnosed with PCOS shortly before falling pregnant with my now 5 year old. (Was told I may struggle to have children but fell pregnant on the first cycle) I have always been skeptical of my PCOS diagnosis as have no typical symptoms and have very regular periods every 30 days.

I have only ever had a blood test to diagnose PCOS. Everything I have read says in order for a proper diagnosis a scan also needs to be done but several GPs I have visited have said they don’t feel there is any need for this.

I recently had blood work done that confirmed ovulation and now I cannot have any further testing on the NHS. My GP told me today on a phone consultation it is normal for it to take upwards of two years to fall pregnant and just to keep trying which I will do but I really feel a bit brushed aside in relation to the PCOS. Am I wrong to think it should take more than just a blood test (done more than 5 years ago) to confirm a diagnosis?

Also, to add I had a very strange period last cycle where I spotted every day from 5dpo to 14dpo. Period arrived 4 days late which again is very unusual for me and when it came it was short and light. My GP was unfazed by this and just said to monitor it.

I am prepared to go private for a scan to check everything is okay and I understand the NHS is limited in what fertility treatments can be offered ttc when you already have a child but in terms of my PCOS diagnosis and the strange spotting I was hoping I might be offered some sort of investigation on the NHS? Every time I bring it up I feel like I’m brushed aside and not taken seriously. Before I was diagnosed a GP literally said to me ‘we’ll test you for PCOS but I can tell by looking at you that you don’t have it’🫨🙄🙄

Any advice appreciated x

Have you been diagnosed with PCO or PCOS? They're different. I have PCOS, diagnosed 21 years ago. I had blood tests and scans to confirm diagnosis.

PCOS I believe? I’ve never heard of PCO?

My GP sent me to a scan at our local hospital to check if I had PCOS. I didn't so not sure what next step would have been.

It's worth looking it up. With no symptoms and regular periods it's more likely PCO which is far more common and doesn't effect fertility in the same way. PCOS is a hormone imbalance with more complications.

Thank you, that is interesting and definitely seems a lot more likely for me. Is there a way they can test if it is PCOS or PCO?

I'm not sure to be honest. My PCOS was diagnosed via a combination of my symptoms, blood tests and scans. My hormone levels were very elevated, I had to. Have repeat bloods done and they were consistently high) and I had loads of 'cysts' which aren't cysts but follicles on my ovaries. I also went months between periods and had excessive hair growth. I put prescribed an oral contraceptive initially but that was all. I never received any other treatment or medication for it.

My PCOS was diagnosed over 10years by a series of blood tests and an internal scan plus review by an endocrinologist, so i think you are right to be sceptical if you've just had a blood test by the GP. I have had one child conceived with fertility treatment and one child conceived naturally. Most of the advice for conceiving with PCOS focuses on encouraging ovulation so I'm not sure would be relevant for you if you are already ovulating? But no harm in trying maybe? In which case it's maintaining a healthy weight, lots of people with PCOS find going low carb helps, and taking inositol. If you want to pursue a medicated route, the first option is usually metformin but I wouldn't recommend it if you dont have to, because it can have some grim side effects and as it works to bring back periods, if you are already having a period im not sure what value it would add? Inositol would be better to start with.

Thank you for all your responses, they are very much appreciated

One hormone level to ask the doctor to check is prolactin. If your prolactin is high then it reduces your chances conceiving. My gynaecologist repeatedly told me that I'd likely have trouble conceiving (thankfully I didn't) and that, when I was ready to start a family, they'd give me Clomid which helps release the egg from the ovaries.

Has symptoms of pcos from around 18 years old or so . Took me until 33 to get diagnosed was constantly faffed about

Polycystic ovaries is a normal variant, about 30% of women have them on scan

Polycystic ovarian syndrome is two out of three of polycystic ovaries, clinical.or biochemical evidence of too much testosterone, and evidence of irregular ovulation.

Doesn't sound like you have PCOS from what you have said and with regular periods there would be no treatment anyway The NHS are unlikely to offer anything re fertility if you're still with the father of your child so if you're looking for that you'll need to go privately

What is your BMI?

Has your partner had a semen analysis? You should also have a HSG to check your Fallopian tubes are open.
Fertility investigations are a postcode lottery unfortunately but in my area you can have everything other than IVF even if you already have children.

My BMI is 24. And yes, the only thing the NHS would offer me is a progesterone test to confirm ovulation and a thyroid test and both came back normal.

That is frustrating! All they will offer me on the NHS is a progesterone and thyroid blood test which I had and both came back normal. There was no mention of any tests for my partner. I haven’t asked though but I would have thought they would have mentioned it if that was the case.

If you use the symptothermal method https://www.acog.org/womens-health/faqs/fertility-awareness-based-methods-of-family-planning#:~:text=Symptothermal%20Method%3A%20A%20fertility%20awareness,signs%20and%20symptoms%20of%20ovulation.
Using this method you can find out yourself if you are ovulating or not.
I have PCOS. I get periods - they are not super regular. But I don’t ovulate every month. With a heavy uterus lining this is possible .

So I cannot see that you have PCOS in any meaningful way or that it should be affecting fertility. It's not unusual to take longer as you're five years older than last time. Consider cycle tracking with a clearblue machine - NICE don't recommend it but can be very helpful.

These may not be available to her as she already has a child with (I assume) the same partner.

I think it depends on the trust. My DH and I had NHS letrozole treatment to conceive DD1 and we were offered the same again (including repeating all the relevant tests) when we wanted to ttc for DD2.

Absolutely, depends on the area. Your experience is unusual.

thanks! I track BBT and CM and use OPKs and all indicate I am ovulating plus the progesterone test confirmed (at least on that cycle) that I ovulated. I suppose I just have to keep trying! I was naive to assume because I fell pregnant so quickly the first time would be the same the second time round!

You're five years older this time.......

We had problems conceiving baby number 2 and it turns out my husbands semen analysis results were really low. We got the book "it starts with the egg" and he took the supplements suggested in the book and within 3 months I was pregnant. So it worth your oh trying some supplements for 3 months and even you as well