PCOS ‘late cycles’

[TommyShelby]

We have been trying to conceive for 22 months. It has been a very long and torturous time for us. I have been diagnosed with PCOS and I am in metformin for this. I had a miscarriage at 10 weeks in April which was horrendous. Since then, my cycles have slowly regulated (for PCOS) and have shorted from 50+ days down to 32 days and 39 days since the miscarriage. I am currently on day 46 with no sign of AF. I tested a week ago and results were negative. All I can think about is if I could be pregnant? I am so fed up of negative results and with each cycle my hope dying a little bit more. Can anyone offer any reassurance

Hi Tommy. It sounds horrendous, I'm sorry you are going through this, particularly with the miscarriage so recently.

Of course, it's possible you COULD be pregnant, in which case take another test in a week or two. It's also possible that in this cycle you didn't ovulate and so either have ovulated at some point and your period will turn up, or you are still waiting to ovulate.

That is the incredibly frustrating thing about PCOS.

If it's any consolation, my PCOS, post DC1 was sort of semi-self regulating and I was getting cycles that were 30-40 days for two or three cycles then a longer one of 50-70 days. All very erratic. I conceived DC2 during one of those longer cycles by pure good luck.

So sorry to read this .

Are you under the care of a consultant gynae at a subfertility unit?. If so how often do they see you and when is your next appointment due?.

What else have they suggested treatment wise apart from taking Metformin, anything at all?.

I would personally not test in the near future given a negative result just a week earlier.

I have heard good things about The Miscarriage Association so I would urge you to contact them too.

@atila - no not under any consultant care unfortunately. I was convinced something was wrong (family history of pcos too) but kept getting dismissed by gp, had to go private to get the diagnosis. In January I was referred to gynae but have not heard anything since and when I try and chase it up I keep getting that I’m on the list - it’s so infuriating.

I am on 1500 mg of metformin a day and I honestly don’t think it’s done a thing. When I try and raise it with gp they show no interest at all. It wasn’t even them who prescribed it, it was the consultant at the London women’s clinic who reccomended it and they prescribed based on a letter from him, without even seeing me.
I have acupuncture for pcos as I regularly have it for migraines anyway so thought it wouldn’t do any harm.
Before the miscarriage I was also taking myo-inositol but I wasn’t sure if that could have been a factor in the miscarriage so have been slightly scared off it

If it is useful as well, I am only 26 and apart from some dodgy wisdom teeth and occasional migraines, I am otherwise fit and healthy. I don’t really fit the standard pcos stereotype of being very overweight. Maybe I could lose half a stone, but otherwise I’m not your typical pcos blueprint. The miscarriage was the most unwell I have ever been.

Inositol from 3 months before pregnancy to 12 weeks into the pregnancy helps prevent pcos related miscarriages. Have you had your thyroid tested? If you have antibodies and / or your tsh isn’t below 2.3 then that can cause miscarriages too.

And a normal BMI isn’t always ideal for women with PCOS. My gaene and fertility consultant both said I need to aim to be in the 18-22 bracket rather than the 22-25 bracket longterm.

@teddybear no I’ve not had my thyroid tested, I’ll take this up with my gp. As you can probably gather, my gp is a bit pants.
I hadn’t realised this for the bmi - I’ll definitley try this. Thank you

@TommyShelby I feel your pain I also am on 1500mg metformin for my pcos. Found out I was pg in march but started spotting april and didnt finish mc until 6 weeks later. It's so frustrating waiting on af to arrive when it's all dragged out. I'm ttc 13 months and between one thing and another I've only had five or six cycles in that space of time. Are you taking any clomid.

I'm on 2000mg of Metformin a day now to regulate me. Your dose does seem low.

One thing I would say is that if you can afford to go private, it's (relatively) inexpensive to get fertility treatment for PCOS (compared to other infertility issues). In my case (the first time), it was the cost of consultations - initial one with tests (including scan) to check on what was going on (although my consultant didn't do the PCOS tests as I had those from the GP - she just did a selection of others to rule out obvious other issues, nothing too detailed). Then, following an initial course of metformin which didn't help, a follow up consultation. Prescription for Clomid was extremely cheap as it's now a generic - I think I paid less than £10 for two months' worth.

Then a consultation on day 5 (I think) after taking the Clomid with a scan to check the follicles.

Obviously, relatively speaking, mine was fairly straightforward. But my point is that it's nowhere near as expensive as IVF or similar. Might be worth considering.

PS I refused to test constantly when I had PCOS but my consultant wanted me to test. And certainly, it would probably have been good with DC2 as I was quite far along before I figured it out! :)

@dublino I’m so sorry to hear that you went through that. It’s bloody awful. No, not on any clomid. My gp is just a brick wall it feels like. I keep feeling that they have a ‘it’s just of those things’ attitude to it

@BlingLoving ok that’s great to hear your experience and that it wasn’t too expensive. It’s good to know that that is an option for me.

@tommyshelby - my GP was super supportive but told me if I could afford it to go private even though she'd refer me to the NHS. I don't think GPs can prescribe Clomid (and it does need monitoring which they can't do). 20 months after seeing the GP originally I was pregnant (as it turned out) at what was my first, and last, appointment with the NHS consultant. And they were so mean and dismissive of me in that appointment that I cried for ages afterwards (although, in retrospect, that could have been the result of what was a very early pregnancy at that stage!!)

Don't get me wrong - it is still expensive to go private. Just a fraction of the cost of going private for something like IVF.

Good luck. I do feel your pain.

@TommyShelby I have to say my go and nurse I'm seeing are both super supportive and were really like ok you want to get pregnant let's go. Is there another gp you can see. I live in ireland so maybe its ran differently on uk. No point staying with them of they ain't gonna help you out. It was clomid that helped me back in march 2nd round and just had 4th just there and hoping to ov in next few days. If you do go on the clomid you will need scans around day 12-14 to make sure your dose isn't too little or too much.

@dublino I definitely think I’m going to push for clomid if I’m suitable. Ttc is really starting to grind me down