2+yrs TTC #1 unexplained infertility, trying Letrozole before IVF in Dec/Jan

[GingerBrummie]

Hi all,
Im getting to the end of my tether with TTC & I guess looking for any similar people in my situation.
Im 38, been TTC #1 for 2yrs 2months Ive literally had all tests under the sun, Im fine as is DH (47). Probably just our combined ages. I recently tried Clomid, trigger & prog pessaries for 2months for an ‘extra boost’ got excellent follicles & lining but alas no pregnancy. My RE switched me to Letrozole, i took first tab last night, CD 2. I will get scanned again & will try again next month before doing IVF in Dec/Jan. Fortunately where I live I get 3 IVF cycles free on the NHS so I know I shouldn't complain.
Ever since coming off the pill just over 2yrs ago I spot a week before my period, I've seen endless docs (private & NHS) & they say it shouldn't prevent me from conceiving. Ive spoken to other women who had same problem & conceived easily. (My progesterone is great, no fibroids, endo etc). Ive wasted a small fortune on acupuncture, supplements but nothing is helping.
Anyone in a similar-ish boat? Starting IVF soon or just generally fed up with unexplained infertility?

Hey @GingerBrummie I'm the same as you re the spotting for a week before AF since coming off the pill - it really gets me down but no doctor that I've seen seems to be in the slightest bit bothered by it. I'm starting IVF in 3 weeks for the first time but we do have male factor so knew we needed it for the best chance really. No NHS support where I live once you hit 39 so we're having to fund it ourselves as I turned 39 at the beginning of lockdown.

Hi MF1981,
Thanks for replying. Ive come to the conclusion that the spotting cannot be a serious problem, I obsessed over it for the first year TTC however Ive had a million blood tests/ scans etc & they are all fine. Ive tried acupuncture, B-Complex tabs but literally nothing makes a difference. I know women still get their “usual” spotting even when they do get a BFP so maybe the docs are right. Shame about your funding, are you in the UK? Good luck with the IVF

Hi @GingerBrummie
Same situation here, we have been ttc for years, tried acupuncture, herbs, supplements you name it, also suspected LP issues. I've been put on Letrozole for 6 months and it didn't work.
At the beginning I thought I'm the only one with this issue but apparently as high as 20% of the cases is unexplained.
I gave up and heading for IVF now, not getting any younger so don't want to waste time specially in the pandemic.
I really wish Letrozole works for you. X

Hey! Also another 'unexplained' here although we haven't had too many tests done actually. Because we are still in 20s and have been TTC for 4+ years we were put straight to IVF waiting list really (well, when I say straight I mean no other tests, the time to get on the list was a while!)

We got letter in over the weekend for our appointment to discuss treatment. Went on waiting list in May this year. I'm thinking Jan/Feb next year is when we will start as appointment is end of Nov and I doubt they will start us in Dec with the festive period.

It's really tiring yeah. On the plus side I'm glad to be moving along with things, but I did start AF again today so it's like another kicker each month. Really hoping IVF works for us.

@GingerBrummie yes in the UK - if I’m reading your name correctly as your location then I’m just up the road from you really.

Hi @MF1981... i actually moved to London many years ago. Top age limit here for IVF on NHS is 40, so just marginally higher than yours. Good luck with it :)

Welcome @ Chicasimona... yep I can relate, done the herbs etc etc...sorry to hear re Letrozole, will you/ have you tried Clomid too? Why do you think you have LP defect? And have you tried progesterone pessaries for it? Sadly they still didnt stop my spotting.

Hey @willithappen, sorry your AF arrived. 4+yrs must be tough... Despite being in your 20s NHS should still carry out all the std tests, bloods, hycosy, SA, scans etc before IVF. Hopefully you’ve had those all done? Have you tried Clomid or Letrozole? Im only trying them as a last attempt before IVF.

Thanks for replying ladies. Im fairly certain IVF is on the cards for me.... i still keep hoping a miracle will happen :)

I got std test with my smear just before I went to GP for more tests, I can't remember if I did another at the time or not actually. I did get day 21 bloods done and partner had 1 SA done. I went for a HyCoSy also which showed one open and one 'more than likely open'

I think because it's been so long it's difficult to think it's progressing much. It was October last year we first went to GP

Hey @willithappen sounds like you’ve been tested and its just rotten luck?
I sometimes think IVF might actually be good in that they may undercover the real problem then.

Yeah, it just seems other people have a lot more tests and things they try out than I have had. Haven't been tested on any other days or tried anything just straight to IVF. But I think because of the length of time that's why and if that's the end route anyway I'm fine with cutting out anything in the middle that might delays things and not work.

Just gotta get through the end of this year and hope for the next start of next. Fingers crossed for a better 2021 for us all

Hi all
Sorry to hear about everything you have all been through. It is so frustrating not having an answer. I find it frustrating not knowing why we can't conceive and would like to push for a HyCoSy but worried waiting for it will take up precious time I don't have. And if my tubes are blocked (i have a feeling they may be) I'd have to do IVF anyway. I'm 36 but my AMH is low so I have been advised to start IVF. But due to low AMH i am unlikely to respond well. Only get one cycle on the NHS too so really hoping this first one works!

@GingerBrummie Do you mind me asking what supplements you have tried for the spotting? Since i have come off the pill I started spotting. Sometimes it feels like my period has actually started for a day and then it goes away and comes back when it is due. I have started seeing a naturopath recently and she has recommended i start taking Vitex. Have you had any experience of this? Apparently it helps with regulating the Luteal phase.

Hi @Jane1284
Sorry to hear you’re in the same boat.. it sucks. For me the hycosy was quick & painless (I know some suffer with it but definitely not me). Apparently it increases the odds of conception for the next 3 months after so I would definitely push for it whilst you are on waiting list for IVF. At least if its blocked you will have an answer? I just hate the not knowing.
Re spotting: i started by having progesterone checked twice, both times it was 47 so very good. Then they checked for polyps/ fibroids/ endo etc but nothing was found. As I spot exactly 1 week before my period every month it was clear its not something ‘physical’ because its not consistent spotting through the month, its cyclical which suggest its a LPD / hormonal issue.
Anyhow.... RE had no suggestions on how to fix & was certain it wouldn't get in the way.
I saw a fertility acupuncturist, who said it was common & that he could “fix” me, he was great but sadly nothing worked, he prescribed me herbs which didnt help either. It was all getting too expensive so I had to stop after 5 months.
Now I take a B-complex pill daily as B6 is meant to help but you have to take it as a complex, still no impact. I looked at Vitex but was worried it may affect my cycle so never tried it. I dont start spotting until 10dpo so im thinking if the egg did fertilise it would have enough time to implant before the spotting starts, what dpo do you start spotting?
Sorry for the long thread.

Hi @GingerBrummie
Thanks for your detailed response. Really helpful. Agreed that the not knowing is driving me mad. I feel all i ever think about these days is TTC/infertility.
I really want the hycosy and i did ask about it but they were so keen to get started on IVF which made me super panicky about how much time i have left. Since I am unlikely to respond well to treatment I feel like i want to get started ASAP- does that make sense? I'm booked in for my blood tests next week followed by the nurse appointment the week after and a baseline scan second week of Nov so hoping I will be starting Nov/Dec. It all happened pretty quickly after being told about my low AMH in September. I get the one cycle on the NHS but i wonder if I can still get the hycosy on the NHS after this cycle before I go private. Something worth looking into. How long did you have to wait for your hycosy after they recommended it?

If you start spotting at 10 dpo then you should have time for successful implantation. Unfortunately I only have an 11 day luteal phase which is quite short and could impact implantation- especially when i am spotting early. I think this is why my Naturopath wanted me to try Vitex to see if we could extend my luteal phase. I usually ovulate on day 17 and then start spotting quite heavily on day 26/27. Then it stops completely and AF comes as expected a day or two later. But AF is super light. I was on the pill for 20 years so i guess i shouldn't be surprised that my cycle is still out of whack.
I read a really interesting book recently called Period Repair Manual. I got it on my kindle for £1. Hasn't fixed my issues but was definitely an interesting read and opened my eyes to possible lifestyle changes that may help.
x

Hi @Jane1284
That is quick, looks like your IVF will be very soon, I really wish you the best for it. I start my first injections end of Dec, over Xmas! Im dreading it & still madly trying everything before then. (Brazil nuts, pineapple, legs in air, constantly wearing socks)! You name it, Im doing it!
If you’ve never had a hycosy on NHS then they should give you this test before or after IVF. My NHS clinic are quite reasonable but Im sure they are all different. Can you do it privately instead, it could happen within a week im sure if you went that route? The waiting list at my clinic is very short fortunately, its massive & I think they get thru patients quite quickly.
From memory Vitex takes a few months to take effect & if you are starting the IVF drugs next month maybe just be cautious.
Strangely my periods have also changed since coming off the pill, they are now 2.5 days instead of 6!
I seriously wish I could just get pregnant NOW as Im literally obsessing over every little change & TTC constantly that its becoming unhealthy. Im sure you relate.
I really wish you the best with the IVF & I would love to hear how you get on with it all.

@GingerBrummie- that's a very good point about the Vitex. I hope it doesn't interfere with the IVF drugs. I guess I can asked the nurses when i have my consult. Kicking myself for not being more forceful about the hycosy now. I could have fit it in while i was waiting for the treatment to start. I guess i should put it out of my mind for now and i can look at it early next year after i know how my first round of IVF went.
I am similar to you on the period front. i used to have long heavy periods while on the pill and now they are so short and light. I thought it was good at first but now I am realising it is not. I'm on day two at the moment and hoping for it to last longer. How times have changed! ha.
I totally relate. Want to be pregnant now and find it so hard with everyone around be getting pregnant very easily (so it seems). I am taking so many supplements. Have overhauled my diet. Cut caffeine and alcohol. All of which may have zero effect but at least i feel like I am doing something.
Thank you, I am actually quite excited to start IVF now as at least it is a step in the right direction. The drugs will be scary but I am sure I'll cope. I know it may take a few rounds, especially with my low AMH, but i have to stay positive that I will get there in the end somehow. I really hope you get pregnant naturally before December but if not good luck with your IVF. Not the best way to spend Christmas but hopefully a really positive start to the year for you! x

I’ve never heard two people on these forums that I can relate to more! Your spotting sounds exactly the same as mine! Always starts around CD22 or 23 so around 8 or 9 days post ovulation. Can get to the point where I think it’s my period but then it stops completely for a couple of days and then my period comes. Periods are now lighter and shorter than they’ve ever been but my cramps are quite intense for the first couple of days - that’s how I distinguish that it’s actually my period. Same as you guys - hormones are fine and nobody seems to think this is an issue! It’s bloody annoying though! I’m starting IVF at the beginning of November so I’m really hoping it doesn’t impact the treatment or is a reason why it won’t work.

@MF1981- that is really interesting you have such similar spotting. Do you track your waking temperature? I have for the past 4 months and last cycle I noticed that my temperature dropped suddenly on day 26 but went back up high the next day. I started spotting on day 27. I believe the high temperature in the luteal phase is caused by progesterone so i wonder if my levels aren't staying constant. I did worry about how this would work with IVF but then i suppose they will give us progesterone after transfer anyway? Not sure if this could stop us from spotting. I guess it is a question for the nurses. Have you had your nurse consult yet?

@Jane1284 I did for a couple of months but stopped this month as I can't try naturally this month so have stopped all the tracking to try and help me relax a bit more prior to IVF. The first month I tracked it, my temp was all over the place after ovulation but the second month was a bit steadier with slight dips on days 20 and 26. Ovulation was some time between days 13 and 15. I too was worried about my progesterone but they said that my blood test looked fine and that they give us extra progesterone post egg collection anyway.

Glad to hear we shouldn't worry too much about our progesterone levels and IVF. Not tracking this cycle sounds like a great idea. I hope you are managing to relax a bit more. Sending you lots of positive vibes for your IVF cycle. I really hope it goes well and you are successful x

Hi both,
I tried progesterone pessaries for the last 2 months but it didnt stop my spotting so I dont think its a progesterone issue. Ive read many success stories where women still had this strange spotting situation but still got their bfp & no period - lets just hope that will happen to use
Best of luck X

Really hope you’re right! Fingers crossed we all get good news!

Hi OP,
Not sure I have much light in the tunnel to add but thought i'd share as have similar ages and have just had 1st frozen embryo transfer so thought this info may be useful to know.
We have unexplained infertility which means there is no reason why we shouldn't have kids as everything is working correctly for both of us, I'm 39, DH is 49. We are now in the middle of the dreaded 2 week wait to see if the embryo embeds but am not hopeful to be honest as had a problem with the meds and missed a few days of Oestrogen so my lining is probably non existent.
We had 8 eggs frozen which turned into 4 frozen embryos and everyone tells me how lucky I am as you only need 1... but to be honest I am just frustrated/annoyed/upset with the whole process and wondering why other people/friends get pregnant without having to go through all this.
There isn't the option of NHS funded treatment for us or to undergo any fresh cycles or freeze more eggs so this is it for us. In a way it's nice to have an end in sight but if that end is one without a baby i'll be devastated particularly when I think of all the money i've burned through trying.
I'll keep you updated but wishing you all the best and hopefully one of us gets a good result soon as it would be lovely to hear some good news.
Good luck everyone.

Hi @fib11235
Thanks for sharing. Is this your first IVF cycle? I really hope it works out. So you’re only allowed 1 cycle on your NHS? If so what happens to the frozen embryos, can you proceed privately if this doesn't work? Sorry, Im not that clued up with IVF, my first app is Dec. Do you do anything special in your 2ww? I lay on back on floor with legs up against the wall daily for 5mins. Its meant to help with getting blood up there with the lining which could help you. Sounds stupid & I agree, no one else does this & gets pregnant easily....
Can I ask if you tried clomid or letrozole before you started IVF?
Best of luck to you. Im also in 2ww hence on mumsnet

Very similar position. We've been trying since August 2018 so 2 years 3 months. Coming towards the end of my first cycle on 5mg letrozole following an explained infertility diagnosis. I also always spot before my period but usually on average of around 4 days before my period starts - also flagged this continuously, and always been told it isn't an issue. We're both 29. The consultant recommended we try up to 3 cycles of letrozole (although she's given me 6 cycles worth) and then go down the IVF route after that, if needed. In my mind, I've told myself it isn't going to happen naturally got us 😔

Hi @GingerBrummie
We weren’t eligible for nhs funded treatment due to age so went abroad and underwent 1 cycle to freeze eggs. Was then meant to use a fresh semen sample but partner has white coat syndrome (fear of hospitals) and wasn’t able to produce a fresh sample on demand so we ended up back in the UK, producing a sample at home then getting it frozen at a private UK before getting it sent out to Spain 3 months later. This is definitely not a cheap/recommended way of doing things but I have just had both a +ve blood and urine test at the end of my 2ww so hopefully worth it. Now have to wait until a 6 week scan to check there is a yolk sack present but definitely getting closer, how are you getting on?

Hi @fib11235 thats excellent news & congratulations, you must be elated. I hope all goes well at the scan. It all sounded quite a faff but Im glad you got your result. I can never understand why some people are allowed IVF on the NHS & some people cannot, I thought it was just a case of trying for 2yrs & meeting their criteria in terms of bmi etc, all seems unfair but thanks for keeping me updated. My spotting started as usual yesterday at 10dpo so I have 1 more letrozole then IVF.

@lankyliscuits looks like we’re quite similar in our journeys. Are you having follicle tracking with your clomid? They make sure you are responding okay etc & measure the lining. Are they giving you progesterone pessaries, might be worth asking for them especially as it doesnt do any harm. I also have a trigger shot as thats also meant to give a little extra help!