PCOS and Letrozole success?

[TinyTraveller]

Hello! I was just wondering if anyone has any recent letrozole success stories that they can share please or anyone starting out on the journey and how they’re finding it.

I started letrozole this cycle after being diagnosed with PCOS but unfortunately I haven’t ovulated. Feeling quite down about it all

I had letrozole 2.5 mg

I ovulated on it

But didnt concieve after 3 cycles

Paid for private hyfosy
( 515 gbp)
My tubes are blocked

IVF beckons

If u dont concieve after 3 cycles
And particularly if u are over 35
I recommend a private hyfosy

@AnonTTC Hello! It’s nice to have another person going through a similar process on here. How are you finding it so far? I hope it works for you!

I had my first scan last Thursday and she said she could see a dominant follicle. I was shocked!! She expected me to ovulate over the weekend and I noticed some symptoms but didn’t get a huge peak on OPK so not sure if I did or not. Really don’t want to get my hopes up! Blood test on Friday should confirm whether I did or not. Even if I don’t get pregnant this cycle, I’ll just be happy to ovulate.

Hope everyone’s doing ok!

Oh welcome to the journey @AnonTTC keeping everything crossed for you. I started my second cycle this week on 5mg and have ultrasound next Thursday so will keep you posted! Xx

Hi @DiscoComfort .. yes so glad to find this thread! It’s going okay thank you.. I’ve only had 3/5 tablets so far but don’t seem to have any major side effects (some slight headaches but nothing much), I’m hoping that doesn’t mean it’s not working - ha!

Amazing news you had a dominant follicle :) it must be quite nice having that news your first cycle, especially if you’re not expecting it. Fingers crossed for your bloods on Friday. Sounds like you have a positive attitude towards it either way.

I’ve bought some clear blue OPKs as well as some cheap ones. I can already see I’m going to end up spending a fortune on them but after never having an idea if/when I’m ovulating it all feels very novel and exciting.

Fingers crossed for you too @TinyTraveller .. it seems 5mg is the magic dose based on the majority of people doesn’t it? My first scan is next Wednesday so we must be at very similar stages of our cycle!

Hello again,

Hope you're all doing well!!

Quick question.. I'm interested to know if any of you have made/been told to make any lifestyle adjustments whilst on Letrozole? My doctor didn't really suggest anything (other than the obvious suggestion of a healthy lifestyle which they would give anybody TTC).

I noticed you mentioned your doctor had suggested no exercise though @DiscoComfort , which (like you) I would find quite hard as quite an active person. Also, I have massively cut down on my drinking but as somebody who does enjoy a drink every now and then I've found it hard because even having one or two I feel guilty I may be affecting the chances of it working. Have you guys all given up alcohol completely, or still enjoying the odd drink? I think there's such a fine balance between giving it the best possible chance, and also letting it take over your life isn't there? Just looking for some advice I guess on how you have all approached it x

It's so hard to say what's best for others @AnonTTC but from personal experience I continued to exercise, played badminton twice a week which is quite high impact. I also drank, but I'm not a big drinker anyway so I'm talking a glass of wine with dinner or a gin and tonic at a gig. No more than three drinks a week. I also took supplements - vaginal probiotics, coq10, inositol, vit D and folate. I'd been taking most of these for several months before starting Letrozole so continued them. And healthy diet, lots of veggies!

I was told low gi foods

Less sugary foods

Lotsa,veg

Mediterranean diet is often recommended

I didn’t have any lifestyle advice from my GP taking letrozole @AnonTTC , not even to reduce my sugar intake which surprised me having PCOS. But I have tried to cut down on drinking, not during the week (and week after) that I’m on, but during the window of ovulation and week after as it can result in an unknown miscarriage. I’m still exercising 4 times a week

@AnonTTC my nurse at my scan told me to continue as normal and try to enjoy myself. She almost encouraged drinking 😂 I don’t drink a lot but have been having a couple of glasses of wine at a weekend and trying not to say no to things as that just makes me feel more down. I did go on a last min mini break with my husband a few weeks ago and we drank loads of wine and I ate everything I wouldn’t be able to if I was pregnant - oysters, cured meats, cheese etc. One of the few perks of not being pregnant so you’ve got to take these little wins!

Regarding exercise, I don’t have PCOS but have had irregular cycles and virtually no periods since coming of contraception over a year ago. I train quite a lot in the gym (strength/weights) and ran 2 half marathons this year so I think she wanted me to cut back in case that was the cause of my crazy cycles. It is strange though because I am a healthy BMI and cut down my exercise quite a lot the past 6 months. I would continue as you normally do. It seems for most people, exercise is encouraged (which I’m highly envious of)!

Thanks so much everybody for your advice/reassurance!

@CatmumTTC definitely sounds like a healthy balance. I've been taking the same supps as you for a while too, but I did stop coQ10 (purely because I was taking sooo many) so I might reintroduce that depending on how this cycle goes (I have heard it takes at least 3 months to start working so probably best to start sooner rather than later I guess).

@worldwidetravel2017 Thank you. My consultant did say similar actually about the med diet. I find it easier to implement when eating at home but when I'm eating out I probably let it slip a little. I guess as long as you're following it most of the time that should be enough.

@TinyTraveller thank you for your advice :) I think drinking in that window makes sense and lots of my friends who now have children adopted a similar approach.

@DiscoComfort Totally agree with you!!! Half of me is like shall I stop drinking completely, but the other half is like do I really want to let this rule my life to the point where I'm restricting doing things I enjoy? Like you, I don't drink too much but I really enjoy a wine at the weekends so I think I will try and think of it the same as you, enjoy it while we can!! Ha. Some of my friends who were TTC before me gave up booze and then found the month they actually got pregnant was when they let their hair down a little more and had a few drinks.. I guess it's all about balance.

Hey ladies,

How is everybody getting on?
I had my first flashing smiley today on my CB OPK test!! Having said that, I am
dubious as I’ve had flashing smileys before on non letrozole cycles.
I have my scan tomorrow so I guess I know then whether it’s a legitimate rise in hormones/whether this round is looking successful. It’s definitely working to keep me optimistic though, haha!

hope you’re all doing well x

Hey all, I have PCOS and conceived on my 6th cycles with letrozole (the first cuddle was a bust, didn't even ovulate!). I went private for my treatment because the wait to see fertility was ridiculously long in my area and I had no periods at all so there was no hope of a natural conception. I was just wondering, are you all getting letrozole through NHS/private fertility clinics, or have your GPs prescribed it for you? I'm looking to TTC again and find myself back where I was a few years ago - no periods and no idea how to get help without going private which is just so pricey.

As far as i know, GPs cannot prescribe letrozole - it has to be through a fertility clinic. Mine referred me back to the fertility clinic when we were looking at our second child and frustratingly, we had to repeat all the bloods, ultrasounds, SA, "in case anything had changed". If private is very expensive, have you looked at if your local hospital has a private arm? Our local hospital will prescribe privately and it's much cheaper than a fully private clinic.

Also, don't rule out the NHS route. Last year when we were referred, I was told it was a 28week wait just for the first appointment, but actually we were called after much less. I think maybe 3 months or something? So not as bad as the waiting lists led me to believe.

Thanks @CrispAppleStrudels that actually answers my second question which is will the NHS even allow me treatment for a second child. I know they don't allow ivf but I was hoping letrozole might be allowed and sounds like it is. I'll go speak to the gp about a referral, I've moved area since I was ttc for my first so hopefully the wait here is shorter. Gotta work on losing a few pounds as well while I wait:)

Good luck to all you ladies here! Xx

Looks like I am in a similar boat to you @TinyTraveller as my scan showed the 2.5mg wasn’t quite enough to grow any dominant follicles. I wasn’t offered a second scan though (just given 5mg for next cycle), so I’m in a bit of limbo as to whether I keep testing for LH though, feels as though I may as well give up on this cycle now 😂

I was expecting this result to be fair, so was mentally prepared for it but it still adds extra anxiety and makes you feel a bit rubbish doesn’t it? Especially since I’ll have to wait so long to start the next cycle now!

Good luck for your scan tomorrow! Hope this dosage has worked for you xx

That’s so strange that they’re not offering you another scan @AnonTTC ! Seems to be postcode lottery doesn’t it. I was the same as you, expected it during my first cycle not to work but I think I’ll feel quite down tomorrow if my second cycle hasn’t worked either after 5mg. Hopefully you won’t have to wait too much longer to start your next cycle! I was supposed to start provera etc all over again but then my period arrived the week before.

@LavenderSweetPea my fertility clinic also advised that the GPs don’t prescribe letrozole, only the fertility clinics. Apparently it’s linked to where the budgets and funding as they’re not linked.

@CrispAppleStrudels out of curiosity did you have to be seen to TTC for a year again for your second child or did you manage to get referred straight away for your second?

No, I didnt have to be trying for a year again. We started trying casually before going to the GP anyway (as came off contraception but not actively tracking) for a couple of months, then by the time we had got the GP appointment, had a first round of bloods, referred to clinic etc, we'd probably had been trying for over six months anyway. I was 37 at the time plus I had a PCOS diagnosis on my medical records. So I'm not sure if that made a difference.

@LavenderSweetPea yes, at our first appointment, they were very clear that we we wouldn't be eligible for IVF and we confirmed we were fine with that. We'd actually agreed that we didn't want to pursue IVF anyway and if letrozole didn't work, we were going to stop at our DD1. So we were pleased when they said they would be willing to consider letrozole / clomid. We were also in a different trust for DD2 in comparison to DD1 and had a much worse experience so it was quite a frustrating process. But we were probably spoilt by having our first treatment for DD1 at Guys Hospital, which is one of the best in the country for fertility! 18months on and it's all a blip in the past though, thankfully.

Thanks so much for sharing @CrispAppleStrudels ! It’s so great being able to have this forum and share stories and learnings with each other. Makes you feel so much less alone in the process

Hey @TinyTraveller ,

Yes - I actually got back in touch to ask them why afterwards and they said it was because I had 'no follicles that were even close' (brutal 🤣) so they know for sure it hasn't worked, so I guess that's my answer to whether this month is 100% out. It sounds like I can start my next round in early Dec, so not too long. I'm hoping I'm like you where my period comes naturally, because having to take the tablets again adds at least an extra week on.

Completely agree with you that the 5mg seems to be the sweet spot, and I am the same where if that doesn't work I'll be a bit anxious. Keeping EVERYTHING crossed you get the news you want tomorrow though! Agreed, it's very nice having a forum where other people are going through the same thing at the same time. Let us know how you get on :)

Good news @AnonTTC ive responded to the 5mg!! Looks like I’m due to ovulate over the weekend. She told me not to get too excited as it’s like I’m TTC for the first time technically, but still great that it’s working. Next step is to have a blood test next Friday to confirm whether or not I’ve ovulated. Was amazing seeing this one huge follicle on the scan

Oh amazing news!!! That must be such a relief :)

Really pleased the slightly higher dose has worked for you, and thanks for letting me know to help reassure me after yesterday. I've never actually asked to look at the scans so I think I will next time because I can imagine it's really interesting.

Like you say, even if this month doesn't result in pregnancy, it's still so nice knowing you have a chance like everybody else. Sending you lots of good luck!

Thanks so much @AnonTTC ! 5mg seems to be a great dosage so keeping everything crossed for you for your December cycle! Super interesting to see the scan so definitely worth asking! I’ve heard other people have been offered booster shots but the nurse didn’t mention anything about them - seems to totally vary depending on postcode.

Thank you.. you've definitely helped to give me some positivity that this next cycle will be successful. The 5mg definitely seems to be the best for most people from what I have read online.

I actually asked about the booster shot because I had read this too and it hadn't been mentioned to me either. My nurse explained that people are offered this if you attend your day 21 bloods and it shows you haven't ovulated even though you had a dominant cycle, so don't worry.. I feel like they will offer you if it's needed, but for the majority it's not so hopefully you'll ovulate over the weekend without needing the trigger shot!

I had a trigger shot from my second cycle onward. I had a dominant follicle on my first cycle but never ovulated. So my letrozole first was kept the same but the trigger shot added in. Honestly though injecting yourself isn't the most pleasant and doesn't exactly make you feel like your most sexy self to then go make a baby 😂

Hi!
I took letrazole (2.5mg) and ovulated really late on day 24. I also went low carb that cycle (about 130g of carbs) healthy diet in general. I think the low carb diet really helps to regulate your hormones. Anyway I got pregnant and are 7 weeks pregnant now.
Don’t be too upset if you don’t ovulate within the expected time frame you might ovulate late like me. Also test ovulation twice a day to make sure you don’t miss it.