The 40+ infertility roller-coaster. When to get off? thoughts please!

[crystalrock]

Hi everyone. Longtime MN lurker, first post.

I’m not seeking any hard advice here, just and reflections and/or common experiences to help me process and decide what to do next.

I’ve had a difficult fertility journey since starting TTC just over two years ago. It started well, pregnant in 3 months, but suffered a MMC at 7.5 weeks. No joy since then and had my one round of NHS funded IVF in Nov. Despite an abysmal response (two eggs, though I knew only one (the one my body had naturally selected) would be any good as the other one developed late/was small), miraculously the ‘natural’ egg did really well and produced a good quality 5 day blast. It stuck and I’m currently 8+3. However, had an early scan y'day and whilst the doc wouldn’t give me any odds (she just said the risk of MC is ‘higher’) I know numerous signs are pointing to a v high chance of imminent MC (fetus is expected size but heartrate is 90 bpm, small gestational sac (only 3mm bigger than baby) & yolk sac on the big end (4.2mm)). I’m fully expecting the pregnancy to have failed/be well on the way to that when I have a follow up scan next week. Everyone is telling me to think positive, but honestly I’d rather face facts and I can’t see anything hopeful in the data, esp given the heartrate.

After much crying over the last x2 days, I feel more accepting now of the situation and my mind is turning to what next. Given my non-existent response to stims, if I do try IVF again, then I feel natural modified (likely at Create) would be the way to go. However the fertility roller coaster is so intense and draining, and I’m wondering whether to stay on, or get off.

Does anyone have any reflections/thoughts on my experience? Does anyone have experiencing of natural IVF? I just turned 43 two weeks ago. Thanks all

I am a little bit older but due to my age, I went the donor route. I realise it's a personal decision, but when I told my specialist of my decision he was in immediate agreement. It can be hard to get your head around it, but I suppose I view it that I will (hopefully) grow the child inside me, so it will still be mine. Sending you virtual hugs.

thanks so much for responding @Greenlee, and for the virtual hugs. I'm not sure the donor route is for me, but who knows how my mindset may shift in time. Huge good luck on your donor journey - the odds look so much more promising than the natural route, so fingers massively crossed for you :-)

anyone else?

Hi, sending you lots of positivity and hope your scan next week goes well.

I am 40, will be 41 in April. Have just done batching with CRGH, we did 8 cycles over a year, 3 got to egg collection and we got 4 embryos frozen. 7 cycles of Mild and the last cycle we asked to do a higher medicated cycle which ended up getting the 2.

I chose CRGH due to success rates for our age group. Someone also told me about duostim which is two collections in one cycle, there's only a couple of clinics that offer it but this person had a really great response and got lots of top quality blasts to freeze. Wirth a Google as if I had to stim again I would definitely do duostim.

It wasn't easy as you can see from the responses, 5 cycles were no folicles developed at all as i am a poor responder and we just had to wait for good months. In those good months most times we had 1 lead folicle and loads of tiny ones that didnt develop.

i cant say when to get off the rollercoaster as im still on it. But we said we wanted to make sure we had tried everything before deciding on next steps.

I wish you all the best ❤

thanks so much for sharing your story and for the good wishes @SPR40 . Gosh 8 cycles in a year is intense - well done for persisting and getting 4 in the freezer. Are you at the ET stage now?

The one cycle I've just had was with UCLH & CRGH (NHS funded) - I thought CRGH was good (esp on the embryology side) but I don't think they do natural IVF so am assuming at this stage (that if I do cont.) I wouldn't stay with them (unless they can convince me another go with Mild is worth it - but I would be hard to convince, my body seems pretty clear!).

Can I ask if you ever considered natural IVF given you only seem to produce 1 lead follicle (on the good mths), like me?

I'll also look into duostim - thanks for the heads up on that.

Hiya I completely understand as my body said no thank you to the meds too most months. I think every cycle we had they considered cancelling due to poor response, but we opted to carry on and managed to get 1 from the first 2 back to back Oct Nov 21 then nothing for 10 months and then got the 2 from switching to a every day approach in Oct 22. That year was the most challenging year if my entire adult life so I absolutely completely overwhelmingly understand. I did in the middle just feel like giving up and many times cried...alot!

I did consider Create and Harley Street HSFC but went with CRGH on the basis of the freeze all approach.

We are in the transfer phase now as our goal was 4 and we got there. If the 4 are unsuccessful then we will go again with the stims xxx

I will keep a look out for your update, I do hope it is positive news. I know this journey is so hard. I am an expert lurker but sometimes you also need to just talk and vent to people who are on a similar journey xxx

I know the feeling of your body saying "no thank you" to the drugs – I felt I may as well have been injecting water! That first progress scan where they said it’s literally doing nothing was devastating.

No joy at all for 10 months must have been utterly soul destroying – I’m in total awe that you ploughed on through that.

It really does take over your life. My mind has been deep in an ‘infertility hole’ since the scan on Tues but I know I need to try and pull out of it (at least for a bit!) soon as it can become very corrosive after a while. So good to talk to someone who understands though!

On ‘freeze all’ – can I ask is your understanding this is not the approach Create take? I had assumed that if e.g. I go for a 3 cycle package they’d freeze all then transfer at the end. But may have that wrong!

Huge, huge good luck with the transfer phase – such a nail-biting time! Do keep me updated if chatting is helpful.

I’ll update here on my scan next week but I’m very much resigned to this one being over. The only way I think I can get through it tbh! Sending lots of warm wishes xx

I really really hope it isn't over for you, but I absolutely understand the mental preparation we have to do to ready ourselves. As you can see I do it by thinking about duo stim even though I'm not in stim stage, it's the if I need to do stim again protection wall I have built 😊

It might be that Create do offer that, it's been a whole since I had my consultation. I think when I went I just happened to have a random negative experience with the doctor I had my results consultation with. They wanted to do ICSI and I didn't think I needed it but they were pretty much refusing to remove it from my proposed plan. It was quite stressful and when considering the options that made me not choose them to be honest. But so many people on the forums have had fantastic experiences with them so mine must have just been a random.

Sending you lots of love, strength and positivity 💖 What day is your scan next week? Xxx

Yes, once you've been in the infertility game for a while, you understand how vital mental preparation is. I was chatting to a friend a few weeks back about my plan to explore natural IVF if my current pregnancy failed and she remarked it was odd that I was so focused on IVF when currently pregnant! But I just don't think you can really understand unless you've been there.

My scan is on Tues next week. Can't come soon enough (so that it can be over with!).

Thanks for the info on Create. I think my plan is to have a consultation at both create and CRGH, see what they say and then take it from there.

Are you currently in a 2ww, or gearing up for a transfer? Sending much love and positivity back at you 💖

Hi I am pregnant at the min for the first time in my 40 years, it is so unbelievably exciting yet scary in equal measures. It really is indescribable if people haven't been in the situation of IVF. I count everything in sleeps so only 5 more sleeps to go until your next scan and in the interim you have a small distraction of considering options and have a plan if they are needed, but I hope they are not.

Similarly I have my "plan" lined up, which is to transfer the next one. Repeat x 3 and then back to stims. I think having the plan keeps me sane in the moments where it doesn't feel real or I have a twinge or my boobs stop hurting.

I thought IVF was the hard part, wow was I wrong!

Here for you ❤

SPR40 thank you very much for sharing your story,. i did 3 rounds of egg freeze and recently fertilized them with no success. so looking for stimulation again Could you please tell what is your AMH? (My one is 0). As i wonder if they would stimulate me.

Ah that is such wonderful news @SPR40!! How far along are you? I find it really reassuring that us ‘one-egg-wonders’ can have success. I’m really starting to believe that (for some of us at least) quality is more important than quantity. Whilst you struggled hugely to get your eggs, the fact that in the end 4/4 resulted in embryos is pretty amazing and well against the odds (if I’m right in saying this is what happened to you?). I couldn’t believe I got pregnant with just one egg, so my hope is if I can roll with my body and get a few more single eggs out, one might stick for the duration.

I really hope the pregnancy journey isn’t too agonising for you – it’s so hard to balance being pragmatic about the odds etc, whilst part of your brain is also screaming “but you’re pregnant, accept it!”.

crystalrock fingers crossed for you!

crystalrock did you do PGT of the blastocyst?
SPR40 - did you do PGT before freeze?
From my frozen 21 eggs I had only 1 day five blastocyst, but it stopped growing and they didnt even do PGT.

ah thank you @Londong. No I didn't do PGT testing - it's not available on the NHS (you can't even pay to add it on privately when doing an NHS round). I'm not sure i'd doing PGT in the future however given the emerging research showing it's limitations. It's tempting to do it in the hope of avoiding further miscarriage, however knowing that it could mean throwing away an embryo that could result in a healthy baby puts me off it. If I produced more eggs though I might feel differently. So sorry to hear your egg batching didn't work out. Maybe a natural IVF route could also be worth exploring for you?

Love the "one egg wonder" title lol xxx
I was similar to you had more than 1 egg collected but only 1 really was viable the lead one, apart from the last cycle.

Cycle 1 - 3 eggs collected, 2 fertilised, 1 day 3 and 1 blast
Cycle 2 - 2 eggs collected, 1 fertilised and made to blast
Cycle 3 higher meds - 2 eggs, 2 to blast

But as I said every cycle they considered cancelling as I am slow to respond and my collection is about 3 days later than planned as I have to stim longer to get the big enough while trying to prevent premature ovulation which my body fights against the meds once my LH is over 11.

The last cycle we had to trigger even though they hadn't got big enough as my LH was so high. The clinic wanted to cancel we said nope we go ahead. I was even scanned on the morning of egg collection to check they hadn't popped out already.

I think at that point of having a year of cycles I understood my body quite well and trusted myself to make the right decisions. Actually I give hubbi the credit he is very logical and does a lot of research to support our decisions mine are purely based on emotions lol

I didn't do testing either for exactly the same reasons as you, so i know there are higher risks involved, but after all the work creating 4 embryos I didn't want them to mess with them and I didn't want them to potential discard a viable one with everything I have read from the American research. So we took our chances. Every week has just been filled with 50% excitement and then 50% worry.

I am absolutely with you on the fact that your body is giving you an egg which is fab! ✨️ xxx

4 more sleeps xxx I hope you are doing OK and taking care of yourself. ❤️

Haha yep the ‘one egg wonder’ title just came to me as I was writing – I’m going to stick with it now! 🙏

Your egg quality does look really good from those stats – 5 embryos/4 blasts out of 8 is really good! Many women would kill for that. The down side though is only getting 1/2 a pop means a much longer slog – as you can well attest! But amazing that one has stuck and you have x3 more backups. If I do x3 rounds of banking with natural, I’d be happy with x2 blasts at the end I think.

Is there a reason they didn’t try you on higher stims earlier? I was on the max (as I understand), so no room for manoeuver there.

That’s crazy they wanted to cancel a cycle you ended up getting x2 blasts from. It's a little daunting how so much of this can be in our hands – that we can’t just hand ourselves over to the professionals and trust 100% they will make the best choices. It does add to the stress I think. But great that you took control and trusted yourself. I’ll take that thought with me on the next stage.

I keep debating whether to go to an EPU for a scan tomorrow so I don’t have to wait till Tues, but I know it’s more sensible to give it the week as will likely give a clearer picture. Everything in the data I can find is telling me 80-90% chance of demise given the heartrate + the gestational sac is small which is another big red flag. So going with about 2% hope. Right now I’m mainly hoping for it to be conclusive either way as the limbo is really tough. As soon as I can move forward, the better.

Hope you have a nice weekend lined up!

Hi lovely, did you decide to gi to epu or wait, only 1 more sleep to go xxxx how are you feeling?

They didn't change to higher before as we had those 2 successful back to back cycles and my FSH can get super high. The highest it has been is 43.8 and it needs to be under 16 to start so I was having a downreg with the mild which they couldn't give me with the short flare as the downreg is later in the process. So when we went to high we would have to wait for a naturally good FSH month. We were fine with that as we had just gone through 10 cycles of suppressed FSH with no activity or folicles developing then shrinking so we were fine with waiting. We had to wait 1 cycle the first month of no down reg fsh was 21 the second month it was 12. On suppression it was 1 and 2 but I wanted to see what Mt body naturally wanted to do as if it was surpassing what was a high month Mt view was that there would not be any viable folicles anyway but we would never know as fsh is suppressed. Dr said that's not how it works but based on the 10 months it made sense to me lol.

The first ever cycle we had only 1 folicle developed and was slow and small and they wanted to cancel that one too. They were shocked when we said we wanted to continue and put a note on my file to say if only 1 continue. We had an extra 2.5 days of stims to get to trigger.

The 2nd cycle I thought I was going to have loads of folicles but my lead folicle had other ideas and blew up super speed so we triggered to catch it.

And then the 3rd is the 2 that were super slow as normal but LH peaked so we triggered.

I forgot to say before we went private I had 2 cycles with NHS, first nothing grew, 2nd premature ovulation converted to IUI. Literally the worst experience of my existence and sent me into depression, as neither counted as cycles I still had 3 cycles of ivf available but I couldn't leave it in their hands they were too disorganised and chaotic. After the failed IUI in April they didn't do my follow up even though I called every day until mid May, then we went private and they finally called me back in.....December!!!!!!!!

I think that's why when we went to CRGH I took control as with NHS I felt that at any point they could whip it away from you but with private if I want to keep going when it's a potential crap cycle then that's my problem as I am paying for it.

There are so many moving parts it is honestly a miracle to get to each step.

I hope you are ok xxx

God it’s so crazy how much things in the body can fluctuate so much from one cycle to the next. And not always in an age-driven downward trajectory. I can't believe how grueling that must have been for you to be monitoring and scrutinising your body over such a long period - it must have been utterly draining.

That’s really true what you say though about at least having more control over things when private. Like you, I has such a roller-coaster with my NHS round – first they were going to cancel (which I was totally gutted about), then they said actually carry on for a bit, then they said convert to IUI, then they said actually we can’t (as I have one suspected blocked tube so not worth it) and finally they said they’d go ahead and collect the one egg, despite telling me all along the way they don’t do EC for x1 egg (as risks of infection etc outweigh chances of it working - which is total rubbish as when they realised this was my only NHS round, IUI not an option & EC my only hope they suddenly downplayed this!). The roller-coater aspect hugely added to the stress. Also, had IUI been an option they'd have never let me get to EC. And yet EC proved worthwhile.

Anyway, I’m hoping the lessons I’ve learnt from this round (I’m a low responder, collecting x1 egg is worth it etc) will put me in a better position next time. Tbh the worst part was finding out I’m a low responder but now I know this, I’m hoping the worst shock is out the way, and that going private will also reduce some stress as well.

I didn’t go to EPU in the end as thought best to hold out. I feel fine physically, but just want tomorrow over now. But not long now. I’ll keep you posted xxx

The NHS rollercoaster is crazy, I cannot explain how different it felt when we went private. I can't say the service was any different it was more how I felt about it. Its so blooming expensive that I was going to ask all the questions I wanted until there were no more questions to ask. Why this medication, why this protocol, what were my blood results every time they called to say carry on with the protocol, what was my E2 and LH rhey were like eeeerm we will need to call you back. They were just not used to someone being all in the details. When my LH started to creep I was the one that said to them are you not worried about this LH do you not think I should start the suppression tonight, they called me back and said yes. Honestly it was so freeing. One of the 10 cycles they said to keep going but we knew from the E2 drop it was never going to work so when they eventually abandoned we were able to say yep we knew just widnered what it was you were tracking and did it help...it didn't lol!

I am thinking of you and hope tomorrow goes OK and none of this chat we have had matters xxx ❤️

Hi @SPR40 just writing with an update: as expected, not good news I'm afraid. There was very little growth from last week and no heartbeat. I was actually pretty calm receiving the news, as I fully expected it, and I did a lot of preparing and grieving last week. I was also relieved it wasn't inconclusive.

They wanted to me wait for a couple of weeks to see if it passes naturally, however I pushed for an op as know (from experience) that it can takes weeks for the body to clock and I want this over with. So they've booked me in for an ERPC on Monday (which i had with my first MMC).

I am gutted, but feel strangely OK right now. I've had so much anxiety since finding out I was pregnant 5 weeks ago, particularly over the last week of course, that I kind of feel relieving not to have to be worrying anymore.

I have a follow up with a CRGH consultant in a few weeks and am going to book a consultation & scan at Create after next week once the bleeding has stopped (which didn't take long last time). Then it's back on the horse!

Your point that private is better than NHS has been really helpful to hear, makes me feel a lot better about the next step... xx

crystalrock thank you for sharing your story❤. Just to let you know create has virtual evening today 6pm...

I am so sorry to hear your news. 💔
I hope all goes well next Monday and your recovery is quick. If you have any queries when you start your next steps or just want to talk please contact me. Here for you every step and sending all the love and positivity for the next steps. This is the start if your next chapter of your story xxx

Also you may feel strong today but please remember you don't need to be, its really sad and you are allowed to be sad, angry, whatever emotions you feel. I hope you have a support circle in the real world but in the virtual world here if you need to talk on here or by private message xxxx

thanks so much for flagging that @Londong - I'm going to have a little break from all things fertility for a few weeks, but i'll def check out one of their virtual evenings in a few weeks time

thank you @SPR40 for your incredibly kind and lovely words and for the offer of ongoing support. It really has helped chatting with you this past week, so a very warm thank you to you❤

And yes absolutely, it'd be great to stay in touch - you seem to be a real expert so I may need to pick your brains at times! Also lovely to just chat as well about how it's all going. I do have a very supportive partner (though he struggles with the loss as well) and friends and family around me, but it really does help to speak with someone who gets it first hand.

Do of course reach out to me as well if you face pregnancy worries or stresses and it would be helpful to chat - please don't think that this would be insensitive at all, I'd just be happy to help. You've been on such an incredibly tough journey and I know you'll still be dealing with a lot of emotions everyday. I'll be crossing all my fingers that everything goes well for you - a fellow member of the one egg wonder club! 💓