Advice please…. PCOS / Infertility / Letrozole

[Loulou2202]

Hi,

Im hoping someone can share some wisdom with me , as obsessively googling is not doing me any good and I might find someone on here with some experience of my situation. It’s a bit of a long one so please bare with me.

Background

I’m 33 . Have been TTC for almost 2 years.

I came off the pill 2 years ago and got pregnant month 2 of TTC ( no cycle tracking or anything like that).

The pregnancy sadly ended in a MMC at around 7/ 8 weeks, and I haven’t been able to conceive again since.

Currently under care of fertility Dr on NHS , had the usual tests.

Partners SA was fine, within normal ranges. I have had a HSG ( clear) but have been diagnosed with PCOS ( high amh). As far as I know all other blood work was normal.

I have fairly regular periods but it appears wasn’t ovulating , which made total sense as to why we weren’t conceiving and was prescribed Letrozole .

I was really sure it would work given that appeared to be the only issue preventing us from getting pregnant.

However I’m now on my 5th month of a 6 month course of Letrozole ( my clinic does not monitor so no scans but did have a day 21 blood test that confirmed ovulation on month 1) and I’m running out of hope that it will work.

Heres where I’m looking for advice;

If I’m ovulating as the letrozole is doing its job , what else could be preventing me getting pregnant?

Has anyone else taken Letrozole for the same reasons and it’s not worked? Did you ever discover another issue that was impacting you or is it just put down to bad luck?

Are there any other checks other than a laparoscopy that I should have done ?

My consultant seems more interested in pushing me to IVF ( which is poorly funded in my area and I’m not even sure I’m eligible for) than actually trying to understand what’s causing the issue and I’m feeling a bit lost and hopeless.

P. S I fully intend to talk to my consultant at my next appointment and ask these questions but it’s not until end of September and I want to ask the right questions / ask for the right treatments.

Thanks for reading

Hi @Loulou2202

I can’t offer much guidance I’m afraid as I have just finished taking my tablets on my first cycle but my circumstances are similar.

I’m 36 and have been trying for over a year with no luck whatsoever. I’ve had regular periods in that time, positive ovulation tests, a scan showing a decent follicle but my progesterone levels are too low to show ovulation. I don’t believe I have PCOS.

What dosage are you on? Are you taking any supplements in addition to the letrozole?

I’m with you on the Googling, it is not helpful but I can’t stop myself trying to find answers.

Thanks for the reply. Sorry to hear your going through it too it sucks doesn’t it!

Letrozole does seem to work for a lot of people so please don’t let my situation dampen your spirits .

I’m suspecting another issue in my case but just don’t know what it could possibly be hence reaching out on here.

I started on 5mg , I believe the starting dose is usually 2.5mg but it worked for me and I guess saved any wasted cycles getting the dose right .

I do take a few supplements , co enzyme q10 for egg quality, folic acid, vitamin D and also inositol for the PCOS. Partner takes Proceive max for men which is expensive but full of loads of good stuff so we really are trying our hardest.

It really does suck and I don’t think people who haven’t experienced it really understand. I’ve not coped well.

I’m taking all of those too apart from the inositol and I’m also taking a couple of herbal remedies to try and cope with the stress.

I am trying to be more chilled out about it, this cycle I’m just really hoping to get the blood results to show I’ve ovulated and then go from there. I’m trying to be positive but not get my hopes up!

My consultant has said I wouldn’t be eligible for NHS funded IVF for another 6 months ish anyway and I’d need to lose a bit of weight before so I’m just trying to concentrate on my health at the moment.

Do you have a review appointment coming up? I hope the consultant can give you the answers you need.

Hey @Pixiedusted I’ve got pcos too just hoping I ovulate don’t know if I’ll ovulate with letrozole they saw follicle on day 12 of scan have to go for day 21 bloods. Which clinic are you with?

@Pixiedusted I completely get what you mean. I go through really low points , I’d been better since the letrozole was prescribed as I felt like I had a plan but as the end of the treatment comes I can feel the anxiety rising again.

I do have an appointment at the end of September to talk about next steps so will have to discuss my concerns then but my last appointment lasted less than 4
minutes and he didn’t seem interested in anything I asked tbh.

Fingers crossed for your day 21 test , remember your only month 1 so if it doesn’t work you can always up the dose next cycle

I’ve got pain on my right ovary like just above the groin area under the stomach it’s been coming and going like a dull ache, sharp pain

Bump

@Sweet211 is that because of the PCOS or do you think it is ovulation symptoms? What day of your cycle are you on?

@Loulou2202 i’m sorry to hear your appointments haven’t been that great, are they face to face or over the phone?

@Pixiedusted mostly phone, the only f2f was the day I was given Letrozole. I don’t like to sound ungrateful as I know the NHS are stretched but it feels very much like you are just a number

@Loulou2202 letrozole's efficacy maxes out at 38% over 6 months even when the doses are correct. So unfortunately it's often just not enough. I agree the NHS clinics are a bit minimal in their approach (just about to go onto 7.5mg myself under the NHS!)

@IWillBeWaxingAnOwl thanks for sharing , I gathered if it’s not done the trick in 6 months there’s little to suggest any longer would. I am ovulating though that’s the thing I’m struggling with so technically it’s doing a grand job lol I just want to know what the missing link is, I know online forums are not a replacement for medical advice but it helps to vent and hear other peoples wisdom :)

Sorry I didn't mean to sound blunt or unkind @Loulou2202 - I honestly wish I knew. My NHS clinic wouldn't recommend any supplements but said they have a recommended list for IVF patients to improve egg quality... So why not tell us to take them now?! Don't I need good eggs now?!

It feels like they don't invest much in letrozole I agree, but not sure why as it's so much cheaper for the healthboard than IVF!

@IWillBeWaxingAnOwl oh no you didn’t at all, I appreciated the statistic I hadn’t know that before :)

Yes! Exactly that. Im not sure of your background but I listed a few above that were cleared by my clinic if they are any interest to you but they are pretty standard supplements and if your a regular on here you’ve probably taken them all by now.

I know there isn’t a one size fits all treatment for everyone and varying issues that come with infertility but it seems the way things are done and approached vastly vary across the country too which really confuses me.

Thanks @Loulou2202 - the only one I don't take the same as you is Q10 (can you recommend the one you take?)

I got mine from Myprotein but they are out of stock , these seem to be the same thing

www.hollandandbarrett.com/shop/product/holland-barrett-coenzyme-q-10-tablets-30mg-6100129572?skuid=007273

I’m taking 30mg, online says you can take between 30mg and up to 200mg but I was nervous about knowing which dose to go for alongside other ones I was taking so I stuck to the minimum but I personally might take a higher dose now given the lack of success .

I’ve been taking these ones if either of you wanted to try a higher dose

www.amazon.co.uk/gp/aw/d/B07RF8GRGT?psc=1&ref=ppx_pop_mob_b_asin_title

I’ve been taking it for 2 months and I think they say it takes 3 months to make a difference.

@Pixiedusted I’m on cycle day 19 I don’t know what to expect with my blood results I’ve got no cramping or anything today.

@Pixiedusted thank you.I have just ordered a couple of bottles of the higher strength after doing a bit research , I don’t think it can hurt to try :)

@Sweet211 did you get your test results? I’m on day 16 today and I think I’m going to ovulate tomorrow.

@Loulou2202 thats the stage I am at, it feels like there is nothing you can do but try things which other people have had success with.

I was on clomid for 3 months and letrozole for another three and despite ovulating I didn't get pregnant. I have PCOS but seemed to be ovulating on metformin so I'm not convinced that lack of ovulation was the issue with me. All other tests and DH and I were normal.

When the consultant was signing me off from the letrozole treatment I asked her what the problem was if it wasn't ovulation and was told "maybe something microscopic". I still don't know what that means. I never had EWCM so I wonder if that might have been it?

I'm not in the UK so have no public IVF here but rather than staying on letrozole which she offered me I just paid for IVF because letrozole clearly wasn't going to solve my problems and I'm 35 so time isn't on my side.

Not sure if that's helpful but that was my experience.

Hi @Somatronic , thanks for sharing. Sorry to hear your having difficulty too.

I have metformin on my list to discuss at my appointment, maybe I can go on that whilst I wait for next steps. il have to wait and see what the consultant says.

regarding the CM, I never really did either but I guess I wasn’t ovulating so it makes sense for me.

If you think you are ovulating and that’s an issue you could try “pre seed “ if you’ve ever heard of it? It’s supposed to mimic the CM and help the swimmers get to where they need too. Not sure how helpful it really is as it hasn’t worked for me but it’s safe to use. Not sure if it’s available where your located but I thought I’d mention it in case you hadn’t heard of it

are you going through IVF now? If so, fingers crossed for you!

@Loulou2202 thank you!

I'm surprised you're not on metformin for PCOS? I was on it for maybe 2 years and I think it definitely helped me (not in getting pregnant obviously but with ovulation and appetite control). The diarrhoea was absolutely awful but I think I got a worse dose than most people!

I tried one of the conception lubes and had no luck. I've tried almost everything over the years haha.

Thanks for your kind wishes. We were very lucky and IVF worked for us so I'm currently 23 weeks pregnant.

Wishing you all a short journey onwards to motherhood. It's so tough when there's no clear reason or explanation as to why it isn't happening xx

@Somatronic

Im with you there! I don’t think there is a thing in the internet / advice forums I haven’t tried that I can get from Gp or do myself so far.

I don’t know about the metformin I was told by one dr I wasn’t a candidate it as I have “lean” pcos and my weight is fine but my infertility diagnosis is pcos as there is nothing else so Im the absence of any other issue I don’t see why they wouldn’t try. I also know of someone who didn’t conceive on letrozole but did on one month metformin , maybe it was luck but you just don’t know.

Amazing that IVF worked for you! Sending you all of the good luck for the rest of your pregnancy and beyond

@Loulou2202 just FYI that my doctors said my weight was fine so I presume I have lean PCOS too though they never used that specific term. Both my gynae and endocrinologist prescribed metformin despite this (gynae initially and then endo doubled the dose). Worth thinking about anyway.

@Somatronic yes I assume it’s just a term some doctors use for women who’s weight does not seem to impacted by the condition. Thats really helpful to know , thank you. Appointment is end of month so fingers crossed!