Recent unexpected PCOS diagnosis: Metformin or OI with Letrozole?

[cbm7289]

Hi all, would like to hear others' experiences as am new to all of this! Appreciate any time you can give to sharing your thoughts.

I am 34 years old - have always had very regular cycles and was periodically on/off the contraceptive pill in my 20s. Was then on the pill for approx 3.5 years until June 22. Came off the pill and had 4 cycles as clockwork. My Nov cycle was then 2 weeks late, and after that I've had nothing. Really unusual for me and thought it perhaps could be stress related. At end of March I was given a blood test - everything was normal - and so then was referred to the gynaecologist. The NHS appointment was for Jan 24 (!!!) so yesterday paid for a private consultation and scan. The ultrasound showed I have polycystic ovaries - and so the doctor diagnosed me with PCOS (although I am aware you can have PCOs without having the syndrome). This was a big surprise given my history of very regular cycles, and the fact I have absolutely no other symptoms at all to suggest I might have it.

I was asked whether I wanted to have a baby - my partner and I were planning to begin trying just as my periods disappeared - and (I was slightly taken aback by the diagnosis so didn't ask as many questions as I should have) the doctor ended up prescribing me norethisterone to induce a period and then letrozole. Essentially an ovulation induction process. This was the first thing she mentioned, rather than anything preceding this. Alongside that she has given me 1000mg metformin per day and myo inositol. Having now had a bit of time to reflect and research to understand what all of this actually means - I can see that often metformin is prescribed for a period of time before then suggesting OI/letrozole/clomid if that doesn't work. I have contacted the consultant to ask whether this is also an option for me, but I have been asked to pay for a follow-up consultation which I am a little reluctant to do as feel I wasn't really given all the information I needed to make a decision in my last consultation. The OI was presented as a bit of a foregone conclusion and my only option if I wanted to conceive.

I am overall a bit reluctant to have to take a lot of medication unless really necessary - perhaps my body would respond to just metformin which would make the OI unnecessary - but perhaps this is also a bit of a naive approach to things? Has anyone else gone straight to OI/letrozole/clomid rather than taking metformin first to see if that works? It seems that if OI doesn't work after 6 months the next step is IVF - which is quite a sudden and big thing to have to contemplate given my partner and I hadn't even really started trying properly and given that my history is not one of irregular or missing periods. Perhaps wishful thinking but could the absent periods just resolve themselves if they are 'reset' with the norithisterone/metformin and my cycles resume as normal?

No real direct question here, just very keen to see if any of what I have described resonates with you or if you are able to let me know about your experiences with any of unexpected PCOS diagnoses, using metformin, or having OI with letrozole etc?

I was prescribed metformin at my first appointment in March last year and then clomid ( similar to letrozole ) at my follow up appointment as they wanted to do bloods first but yes they were prescribed to me straight away. I have not taken clomid for several reasons one of them being I had no periods and it took months of them assing around and a complaint before i was referred to a new doctor who prescribed me provera ( similar to Norethisterone) we also had received my partners results during that time ( which has resulted in being referred for ivf) and then during a pelvic exam there was a concern with my left fallopian that needed investigating. Anyway Given the all clear In October we were advised to trial clomid while we await for fertility clinic. I had a dye test in November and in order to received that it's done on day 10 of cycle so I had to have a period and I took the provera and I don't know what the heck happened but I went from having 1 to 2 periods a year to now having regular periods , ovulating and one pregnancy in december( after nearly 18 years trying ) but it didn't stick. I truly think the provera somehow reset me cycles. My November cycle was provera induced and I had a period 1st december and honestly couldn't believe it. I also started taking myo inositol I december and that month I had ovulated and conceived. My cycles are getting longer but there has been so much improvement. I took metformin from march 2022 and it never made a difference. It did bring on my period 30 days later after starting but after that it had absolutely no effect on my cycles.
I believe the metformin is prescribed because insulin resistance with pcos can affect the ovaries working. Did they check your insulin levels? Mine were pre diabetic so metformin was really pushed on me. Some women respond to metformin and some don't but as I said it had no effect on my cycles. Myo in a natural supplement its b vitamin . If your very uncomfortable my advice is take the Norethisterone and start myo inositol. If in 3 months there's no difference you could try adding in metformin and then deciding if letrozole is the right choice for you or not

As you've said PCO alone doesnt confirm PCOS and my gynaecologist said that 20% of young women have ovaries that look polycystic on an ultrasound.

I am in the same boat (though went a year with no periods after stopping the pill.) Even though my ovaries are polycystic my consultant isnt 100% convinced by the GP diagnosis due to lack of other symptoms and there has been a question mark over how much of it was just pill withdrawal.

I was prescribed metformin for half of that year and my periods only returned once I gave up on it. I agree with post above that suggests asking for a check on insulin levels because if they are normal metformin will be pointless. My blood sugar control was absolutely fine already so metformin did nothing for me but delay the process of starting a drug that could actually help!

I'm on letrozole now to regulate my cycles and to 'strengthen' ovulation - only first cycle currently but fingers crossed.

Have you been offered monitoring with the letrozole?

Hardest thing for me with the metformin was feeling like it wasnt working but not being able to tell for sure. The benefit of the letrozole is that I'm getting scanned to see if it's having the desired effect and means I can hopefully avoid wasting another 6 months on a drug that isnt working for me.

Thank you this is really helpful.

@MK85 - Thank you for the advice re insulin testing. I think I will go back to my GP with the ultrasound scan results and perhaps they will be able to refer me for more blood tests or an endocrinologist. Diabetes does run in my family (my dad has developed it later in life) so there is probably a genetic predisposition that perhaps is coming through? I don’t seem to have any other indicators of insulin resistance on the flipside though - do you know if you need to show other symptoms or can you have insulin resistance with no physical effects?

@Anon9899 - That’s so interesting that your consultant (presumably a gynae?) didn’t want to diagnose you with PCOS. I was a little taken aback at how quickly the doctor honed in on that given my history of very regular cycles, no other issues and also that I did have periods immediately post pill (and the fact I have no other symptoms!). Could I ask why letrozole was recommended for you given that your periods had returned? I hope it works anyhow - and very glad they’ve moved you on from metformin given that was having no effect!

Just want to say that I am ABSOLUTELY FECKING DELIGHTED that a doctor has actually prescribed inositol! 🎉🎉🎉🎉 Have they finally acknowledged its amazingness?!

I can't help with the other drugs I'm afraid, because inositol alone regulated my periods. It took about two or three cycles iirc, and after three months I noticed the impact on the insulin resistance too (which I didn't realise I had). I was upper healthy BMI, but the inositol helped bring it down to mid healthy BMI, without changing my diet. So I definitely had some level of insulin resistance. I've had regular cycles for years now, and easily conceived three babies.

I don't think the insulin resistance was the cause for my difficulty not getting pregnant as we've been trying for nearly 18 years ago and I was always a healthy bmi and blood sugars were normal . I became pre diabetic somewhere in my early 30s ( also runs in family) but had no further symptoms so I didn't even realise I had became pre diabetic. The metformin has my blood sugars under control but I still had no improvement to my irregular cycles even after the 9 months of taking it. It was only when I took the provera in november and started myo inositol In dec that I got pregnant that same month. I think there's something more to myo that just it's insulin effects as that's what the merformin does but even controlling my glucose levels didn't help my cycles

I don't know if I have PCO or PCOS but I was prescribed metformin and clomid early on. Fast forward 5 years and lots of failed ivf, three surgeries (main one being a big adhesion in my uterus) and 4 miscarriages I am currently pregnant from a letrazole round. I've always ovulated anyway, the letrazole is to boost my chances (I am 40 now). I had three follicles ready to ovulate in the lead up to a trigger shot (was the same for the previous 3 cycles but no bfp then).

Personally I'd go for the myo inositol, metformin (i take 3000, so 1000 isn't a big dose) plus the letrazole. However, I am very used to taking lots of drugs after all these years. If you want to take it slowly, start with just the myo inositol and metformin.

I also have a naturally conceived nearly 7 year old, before I knew about the pco/s. My cycles prior to ttc were usually early to mid 30s long with the occasional random long one thrown in.

Realised that wasn't clear. I do have PCO, just not sure if it's the syndrome or not.

I was diagnosed with PCOS due to lack of periods, scan showed multiple cysts and blood tests showed high testosterone and insulin resistance.

I was not offered any kind of medication, GP knew I was TTC and just told me to lose weight.

While incredibly frustrating at the time it did work. I found that once I'd lost about 10% of my body weight my periods came back nice and regular and ultimately I was able to conceive.

What is your weight like? If you want to avoid medication and you're overweight you could try losing weight to see if that helps. You are likely to need to follow a lower carb eating plan if you are insulin resistant, look up diabetic nutrition advise as a place to start.

PCOS sufferer here. Diagnosed at 28, managed to broadly manage with diet until 33 when started taking metformin after dropping to only 2 periods a year. Took metformin for a year and periods came back but we were TTC at the same time and blood tests showed although i was having periods, i wasnt ovulating regularly. So switched to 3 cycles of letrozole and DD was the result of the third cycle (born just before i turned 35).

A few things jump out at me from your post:

• i was treated by an endocrinologist consultant at Guys and St Thomas' in London. He said metformin can take several months to work. So im surprised you've been prescribed it alongside letrozole? He explained it to me as very much metformin first step then letrozole only if metformin doesn't work.
• metformin can have pretty nasty side effects on the gut. If you get D&V, you can ask for a slow release version which is much more gentler.
• make sure you are offered monitoring (ie internal scans) to check if you are ovulating if you do take the letrozole. I had to increase my dose for it to start to work so you dont want to "waste" cycles by not knowing if you are ovulating or not.

If you don't want to rush into meds, there are loads of good websites out there with info on PCOS friendly diets + myoinositol to aid fertility. Always an option to try something like that first?

I was diagnosed at 32, the dr never gave me any medication, just give me the pill told me to lose weight and come back when I wanted to get pregnant. I took a powder containing a combination of myo-inositol, chiro d inositol and folic acid and that worked wonderfully for me, regulated my periods and helped with the horrible pms, I got pregnant after 6 months of trying. I also cleaned up my diet and introduced some low intensity workouts.
Everyone is different of course but i would certainly recommend taking inositol.