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

@Pixiedusted im still waiting for a phone call and it’s day 25 today I did ring them but they said they will pass message on to the nurses to ring me. Have you got any ovulation symptoms? 🤞

@Sweet211 I hope you hear soon.

I think I’ve just hit my peak so will hopefully be ovulating tomorrow and I’ve booked my blood tests for 7 days after. I know this could be my mind playing tricks on me but I do feel achy in the ovary area, I’m not sure I’ve felt that before so I’m hoping something is happening!

I had a similar story. TTC (though I've known I had PCOS since my teens) at 34, got pregnant after 6 months, had a miscarriage. Couldn't get pregnant again, was already in the system for fertility treatment due to me knowing I had PCOS. Was prescribed Letrozole, was on it for 6 months with no monitoring so no idea if I was ovulating with it, but the tablets had an awful effect on my mental health and I think stress was a big barrier to me getting pregnant. The other thing you have to think about is egg quality which is notoriously poor for PCOS sufferers so even if you are ovulating, the eggs may be of such poor quality that nothing is happening.

After the failed 6 months on Letrozole I went on to have IVF, I now have a wonderful 21 month old boy - IVF worked first time and we also have 3 frozen embryos. I will probably never end up using those as I had a suprise pregnancy this January and I'm currently 34 weeks with our second at 39 years old.

@Loulou2202don't give up hope if this doesn't work, there are still options and lots of hope, it can happen for you. I would say don't delay IVF as waiting lists are long and your doctor referring you can still results in many months of waiting whilst the clinic have space for you

@Pixiedusted I’ve rang again they said they short staffed and somebody will ring me back it’s day 28.

@Pinktruffle good luck with your pregnancy. I have pcos I conceived with ivf few years back now my lo is 5 I want sibling for her I’ve got no embryos left I’ve used them all I’ve had failed, chemical pregnancy I can’t afford it so giving Letrezole a shot.

Hi @Pinktruffle thanks for sharing and I’m really pleased IVF worked for you and you got your surprise pregnancy too!

This is kind of what I started this thread for initially , to try and understand what else could be the issue and your right I think at this stage it must be egg quality , as I think I was ovulating prior to Letrozole anyway albeit very intermittently but I can’t be sure .

In that case IVF would be the most sensible next step and without it I won’t know if egg quality is an issue, but then that fills me with fear that IVF will be unsuccessful too as all my eggs will be crap lol.

I just don’t think I was/ am mentally prepared to be at the “last resort” stage if that makes sense, but I think I’m starting to accept that IVF is likely the best treatment for me and my situation and I just hope I meet the criteria and the waits are not too long. I only get 1 cycle funded in my area too so that’s stressing me out too.

@Sweet211 Thank you, I only have a few weeks left now :)

All the best to you, hopefully the Letrozole will work and remember there is always a chance of a spontaneous pregnancy too. Fingercrossed for you

@Loulou2202 IVF is always scary, and the truth is that you just won't know until you do it. The odds make it all very daunting but all you can do is give it your best shot. There is things you can do to improve egg quality in the run up to IVF, I was recommended Inofolic (also helps prevent miscarriage for PCOS apparently) by my IVF doctor so started using that straight away, I also used some supplements - namely Procieve powder and I had acupuncture. I'm not sure the acupuncture did anything to improve egg quality but I found it very relaxing so carried on with it.

I honestly wouldn't discount the effects of stress either, I think that had a huge impact on me though how you are meant to relax whilst experiencing infertility, I have no idea!

Thanks @Pinktruffle I really do appreciate the advice.

I have been taking co enzyme q10 and also inositol and have been pretty much been taking those daily for over a year along with vitamin d and folic acid.

I have literally just upped the co enzyme to 200mg a day just recently once it dawned on me egg quality might the root cause and the dose I was taking was really low.

My partner takes the procieve max sachets for men daily and I moved off procieve supplements myself as it seemed to me messing with my cycle but in hind sight that was probably the PCOS that I didn’t know I had at the time so might go back to them I will look into the Inofolic though for sure.

I also started acupuncture a month ago and had it for a full cycle and a bit but I stopped it , due to the cost and the fact I was taking the Letrozole I thought I’d stop and I’m going to start again when I’m off the medication so at least I’m trying something in the meantime if I have a wait for next steps.

I agree with you about stress. I really do try and be mindful of it and not get myself worked up about work or other trivial things but you are so right, it’s very hard and I find it hardest when I don’t have a plan of action so to speak hence so when my letrozole was coming to an end, the spiralling started again and this thread was born :)

@Loulou2202 good luck on whatever you decide to do I did ivf few years ago it was mentally and emotionally draining but it’s worth it at the end If you have pcos then they will prescribe you metformin similar to inofolic. I’m on 2nd cycle 5mg of letrezole they’ve not even rang back for the results and now it’s day 32 I’m due on soon I don’t know what to do now and how much ivf will cost I’m nearly 40. I feel so deflated my lo wants a sibling.

That's interesting @Sweet211 as I wasn't put on metformin for my IVF cycle, just the usual short protocol drugs. Physically I didn't think IVF was that bad but emotionally it is very difficult, you have so much riding on it and that pressure is a lot.
I don't think IVF itself would be massively more expensive based on your age - you might have a to spend a little more on the drugs though depending on how you respond, you may need more or a longer protocol. I would look in to it if it something that is an option for you. I'm 40 next year and when I was doing my research I didnt see a price difference. Going abroad was notably cheaper though, we had looked at the clinics in Czech Republic and Greece as options. The one in the Czech Republic had particularly good results for over 40's but I don't remember the name of the clinic now. Best of luck whatever you do

@Pinktruffle I have to do 2 more cycles of letrezole but they are not going to monitor they said if I don’t co conceive then I need to make an appointment with consultant they didn’t even give me my progesterone result they said it was workin on me the letrezole. I’ve never responded to clomid.

So it sounds like they've done some tests at least? I find it frustrating when they prescribe Letrozole without scans, at least offer one so we have some reassurance it's working! I paid for a private one and that was a complete farce, they couldn't seem to understand what they were checking and just kept confirming my PCOS.
I found out at the end of my Letrozole cycle that the hospital would have done a private scan for me to confirm ovulation but it was too late by then, they should have told me that when it was prescribed!

@Pinktruffle I had the same frustration as you I wrote about it on other thread I was a part of I agree some monitoring even on a couple of cycles would go a long way. Also there is a slight risk of OHHs taking these meds and you would think they would scan you to keep a check on that. That’s bad about the private scan too, you would think with private treatment you would get what you asked for. It’s such a strange thing and managed so vastly differently in different places.

@Sweet211 I suppose if they said it was working then you can assume your results confirmed it but it’s a shame you have to chase them up so much and they don’t give you the numbers. Sorry your having such a challenge with it. Thanks for the metformin advice it’s something I will be asking about at the appointment.

Hey how’s everyone getting on @Pixiedusted what stage are you on?

@Sweet211 hey! How are you? Iv literally just had a text this week to say my IVF funding has been approved. It took around 8 weeks to get done and I had to have a load of my tests re done . My AMH has dropped by half in a year which was concerning but it was very high originally it’s now in the normal range but no one seems to be able to give me any answer as to why . We get one cycle on the NHS so I have to wait 2 weeks and then follow up with chosen clinic. My partner has had a 2nd SA done as he’s only ever had 1 a year ago so results will be back soon and depending on how it looks will decide if we need ICSI or not. How are you getting on?

@Loulou2202 thats really good news! Sometimes they do take longer which clinic you with? I’m on 4th cycle of Letrezole Stil no luck

Good evening ladies,
I hope you're all well and that there has been positive news for you all 😊
Just going to jump on the thread here.
Nearly 34, fell pregnant easily 3 times but all ended in early miscarriages including one missed miscarriage experienced with 2 different partners, been TTC this time round since May 2020. Turns out I stopped ovulating at some point so 3 cycles with clomid, ovulated but no pregnancy. HyCoSy clear and all bloods fine so just on my first cycle of letrozole.
My main question is have you all got PCOS? I have never been diagnosed and they didn't find any cysts during the HyCoSy and have normal bloods, but really wondering if I might have it with being prescribed the letrozole.
Probably adding 2 + 2 and coming up with 5 but just curious.
Also I completely get about the stress and detrimental effect this can have on your mental health

@Sweet211 fingers crossed for you! how many cycles do you have left?

@JennyB172 welcome to the thread, and really sorry to hear about your losses.

To answer your PCOS question, yes i do.

I had a high AMH which was the first indicator and then confirmed PCO on an ultrasound about a year ago… prior to my mc I had no idea I had it or any reason to suspect.

It’s not uncommon to prescribe Letrozole to induce ovulation for “unexplained” reasons before resorting to more invasive investigations or IVF.

So it not mean you have PCOS but I can see why you would be thinking about that and personally if were you I would probably like to understand a bit more about why you may have stopped ovulating suddenly ( if it’s not normal for you) . If you have a high AMH or any other symptoms it might be with checking with your consultant again x

@Loulou2202 ive got pcos and I’ve got 2 cycles of letrezole left I’m currently on day 42 still no sign of my periods I don’t understand why my cycles have gone longer

@Loulou2202 thank you for your response. I had my AMH tested but don't know the result yet, I have asked for the consultant to call and update me but now luck yet.
First cycle of letrozole did a good job for ovulation but it didn't happen for us again this month as we got another BFN (story of our life) but we're picking ourselves up and we'll try again this month.
I hope things are heading in the right direction for you 🙂

@JennyB172

Hopefully they come back to you soon, high AMH is not an absolute for PCO but it’s helpful in conjunction with other symptoms.

I feel your pain on the BFN front! I know it’s really hard month after month but on the bright side though it’s great you got confirmed ovulation that’s a positive thing! Hopefully the next cycle will bring you good news.

We had out first IVF consult today so things are moving along, thanks for asking :)

@Sweet211 are you still waiting? I wish I could give you some advice but I didn’t have the same issues when I took Letrozole. Maybe you should try and ask for a monitored cycle on your next one so they can keep an eye on you.

Hi ladies, just been following your experiences and it's so interesting to see the different advice we are all given for pcos.
I have 'lean' pcos, and haven't had a natural period since I came off the pill in 2021. After a year of nothing TTC (without periods which was of course not successful) I have gone private to try and get some support. I did one round of 2.5 letrozole in jan but got nowhere with it so now in march I am being put on menopur, then a trigger shot then progesterone... I really hope I ovulate.. even that would be a huge win for me...
Has anyone had any experience with that type of process?
I'm tempted to just try this once then go to IVF, can't believe that's now an option to consider but can't go through this emotional rollercoaster of trying out all these treatments, just feel like a guinea pig that isn't doing what it should! X

Hi@10degreessunny , I agree it seems lots of us get different advice/ approaches to this whole fertility thing depending on where we live lol!

I don’t have any experience of the process you’ve mentioned so I’m afraid I can’t help you there.

I thought they next “ typical” thing do would be to your up your Letrozole dose to 5mg and see how you get on but that’s my experience as an NHS patient and the next step would be IVF on the NHS for my area.

I am assuming there must be a reason they are suggesting this process to you.

It could be any number of things to do with your test results/ numbers/ scans/ time TTc/ your age etc.

If it’s not been made clear to you then you should go to your consultant ask for a clearer explanation on why this method is being suggested as the best course for you and then you can decide to try it.

It really can be an exhausting process I know, I hope you get the information you need and whatever you decide to do works for you x