Treatments for PCOS, so angry at GP

[JaneGnR88]

I was just wondering if anyone was prescribed anything (metformin etc) but their GP when TTC with PCOS.

I just had the most horrible telephone appointment with a GP who basically said we have to try for 12 months (been trying since October, one miscarriage) and that there was nothing they could do until then. He had no idea what he was taking about and did the whole ‘well that’s a positive!’ When I told him about my miscarriage and honestly my heart is broken.

On top of that they’ve lost my scan results and are chasing to find them.

Honestly I feel so so let down and just need to vent/advice.

I’m also going to to try and change doctors!

I was diagnosed with PCOS early last year. We hadn't been trying long at that point so my GP told us to come back when we'd reach the 12 month point like you.
No metform was prescribed or suggested, and from reading other experiences on here I think it's very much based on who you speak to. Even changing Dr's might not be worth the effort.
I'm sorry about your miscarriage, it must be a truly awful experience. Perhaps your Dr was coming from an angle that it's positive that you can get pregnant to begin with.
Can you book yourself for private fertility testing? My local fertility unit tested both myself and DP - I think the cost was around £400 incl a consult and discussion of treatment plans. You don't need to wait for 12 months for private testing.
Best of luck!

Thanks @AStar98 I think it was just so frustrating as I just want help, my hormones are all over the place and I feel we can’t even properly try because of how irregular I am.

Defo going to move doctors, honestly they’re awful!

Private is an idea, but I’m not sure it’s a cost we could justify just yet, but that’s for the info!

How are you doing now? Xx

The use of metformin is not licensed for PCOS but some GPs will prescribe it anyway - some won't.

If your GP won't you can try myo-inositol which some people find works just as well as metformin. This can be bought over the counter.

I'm so sorry to read this. My experience isn't current, and you might be doing these anyway but here's wait I did while I was waiting to get referred.
The book 'Taking charge of your fertility' was great for learning about cycles especially if your pcos causes irregular periods. I followed a diet for insulin resistant and the Verity website was great for advice. Preseed for lubricant as well.

I got prescribed Clomid after a year or so. I think that combined with acupuncture was what did it for me.

Is there a different gp you can see? Hopefully you can find someone more sympathetic x

Thanks all. I’m currently taking inositol, and a conception multivitamin, as well as fish oil daily.

I understand the wait time, I think it was the lack of bedside manner which hurt most, and the blanket - there’s nothing we can do. Just the last thing my hormones needed this week!

I’ll defo check out that book @Jayneisagirlsname thanks for the advice ✨

@Jayneisagirlsname was if your GP who prescribed clomid? If you read NICE guidance
@JaneGnR88 you will read that metformin is not to be prescribed in primary care. It is also not your GP who decided you need to try for 12 months - it's national guidance . Usually it's 18 months if you have never conceived previously.

One of the issues with PCOS for which metformin is useful for is insulin resistance. If you are overweight, losing weight will help regulate your periods .

I suppose it would be difficult to do a day 21 progesterone to check for ovulation as you have irregular periods but you could try an ovulation kit?

By all means be angry etc but I feel your energy is misdirected

In terms of testing - it's 12 months if you are under 35, 6 months if you are over.

If you are over 35 then push for some testing now.

Hi - GP here. It depends what you're trying to treat. With PCOS most women dont ovulate every month so if you're wanting help conceiving then you're probably looking at a referral to fertility services. They wont accept a referral until you have been actively trying for a calendar year. This is because statistically you have a 1/6 chance of conceiving per cycle if there is no sub-fertility, so it only becomes statistically significant that you havent become pregnant after you have failed to get pregnant for a calendar year. Otherwise you're still in the normal range. This does rely on you having a cycle every month however, which most PCOS patients dont have, so it is a little different. You could be referred to Gynae to be seen for PCOS rather than fertility - Gynae would probably be happy to start metformin.

Miscarriage is also a very normal outcome of pregnancy - including biochemical pregnancies 30-50% of all pregnancies end in natural miscarriage before 12 weeks due to chromosomal abnormalities - it is never anything the Mum did, though many women blame themselves. As is is a common occurrence only recurrent miscarriage (ie x3) is investigated.

Metformin can be an effective ovulation induction agent for non-obese women with PCOS, obese being defined as having a BMI of 30 or more. GPs however should not be initiating metformin. Whilst it does have a licence, this is restricted to initiation by specialists - see link BNF

Clomid is what most fertility services would use for induction of ovulation.

I would probably ask your GP to refer you to gynae rather than fertility - as it may be the referral criteria to fertility services are too restrictive. You normally have to spend months filling in a proforma with hormone levels, semen analysis and the like before you can be referred.

Good luck!

I think unfortunately with what our GPs are exposed to every day a lot of them become a little desensitized and as such dont respond how we might expect to sensitive topics.

We are going through ivf atm and unfortunately the what you have bee told is correct. If you are under 35 they wont do anything until you have been ttc for at least 12 months, over 35 is 6 months.

I have been told previously that if you go private and dont get any success going private and you then choose to go back through the nhs, sometimes having gone private means you are no longer entitled to treatment on the nhs, such as ivf. You would need to speak to your gp about this as it depends where you live and which ccg you fall under.

I changed my gp a couple of times over the years. If you are going through something like infertility it's so important to feel supported and understood by the professionals. If you got tells you to change, then you should probably change.

Good luck!

I was prescribed metformin but I went private. Usually nhs won’t see you until you’ve been trying for 12 months, or 6 months if you’re over 35. I really recommend going private for an initial consultation, I was prescribed it in my first session and didn’t have to go back as metformin worked in the third month of taking it.

Personally i have had very poor care from GPs for PCOS. I eventually saw a female locum with some experience in PCOS. She referred me to an endocrinology consultant who confirmed PCOS and put me on metformin. After 12months when that didn't work, the consultant referred me to the assisted conception unit for letrozole (a more effective version of clomid with fewer risks apparently) and internal monitoring to reduce risk of OHSS. I conceived DD on 3rd cycle.

Of course you can go private but i wonder if pushing for a referral first would help get you seen by the right person sooner? Once I had my first appt, things moved quickly (with the exception of the 6 month wait for letrozole when the first lockdown closed the ACU to new patients).

My advice dates back 18 years but I am pretty sure it’s still relevant.

I have PCOS and had very erratic periods, maybe 3 or 4 a year. It was impossible for the doctors to track my hormones as my cycle was so long and so irregular. After waiting 2 years (I was 35 at this point) it was suggested I have a surgery called LOD, laparoscopic ovarian drilling. It was a small hole by my belly button, general anaesthetic but a small operation with very quick recovery. I was advised by the anaesthetist to have sex in the next few days as it was a very effective operation but it wore off after a few weeks. I got pregnant straight away! After giving birth my periods retuned to monthly for the first time in my life and have remained so.

Best of luck!

Thanks so much everyone for your comments, it’s really helpful to hear peoples experiences!

Just to clarify I’m not angry at the GP for the advice, or the wait time, more that they really didn’t seem to care about the struggle I was having 😔

The suggestions of asking for a referral based on my PCOS rather than for fertility are so helpful so thank you! A massive part of the stress is my symptoms so even getting that sorted or under control would make me feel so much better I think xx

Wow @Zott that’s amazing, and a VERY belated congratulations! ✨

I found Accupuncture helped regulate my periods (slightly), and lessened the pain/bloating I would have usually experienced. I have PCOS too.

You can usually get a type of fertility Accupuncture, that will have specific aims.

@JaneGnR88 thanks, he sat his A levels this summer! I just checked the NHS website and the op I had is still listed under PCOS treatment section. I have read lots of PCOS fertility threads over the years and never seen it mentioned, have often wondered if it’s not done very often.

I was never prescribed anything but I was referred to the hospital after a year of trying to conceive and investigated on to see what was happening.
I've had two babies since ( conceived naturally) so don't give up hope x

When I was diagnosed I hadn't had a period in around 6 years, straight away I had blood tests for 9 weeks, I hadn't ovulated once. They referred me straight to a gynaecologist who helped with all the fertility.

Your GP wasn't great with the comment about being pregnant before, however, my gynaecologist said that it is good if you have been pregnant before as it shows your body does know how to.

I was diagnosed May 2018, I'm currently putting my DD's to bed, they are 3 & 1
Goodluck OP xx

Thank you all so much for your comments and suggestions, I honestly appreciate it so much 💖

@hannahkate1989 such good advice, I’ve been hoping I could keep away from actual medication but feel like I’ve hit a wall, I could just be being impatient too though (which is very like me!)
I’ve had a look at that link and it looks great, gonna order a sachet and see how I go!

Thanks again everyone!

@hannahkate1989 , how long have you been taking the Yoppie powder and have you seen any significant symptom improvement?

I am sick of pulling hairs out of my chin, and at the same time losing it from the top of my head! 😂