Completely heartbroken. Infertile at 35?

[HopefulElle]

Hi everyone,

I’ve had a bit of a confusing journey to get to this point, we had been trying for 2 years before seeking help. Both generally healthy, active etc so I wasn’t overly stressed about it straight away. After initial tests we were told that we had “unexplained infertility”, that there was no medical reason we hadn’t conceived and that we should proceed to IVF asap with decent odds of success. AMH hadn’t been done so I was told that would be necessary to determine the dose of meds needed and then we proceed.
All seemed positive.

However, today I’ve had a devastating follow up. My AMH results are 0.4 or “borderline undetectable”. These are off the scale low, even if I was 45 (I’m 35). I’m so shocked and literally just cannot stop crying.

I also had low follicle count, but apparently not a red flag in itself (wasn’t flagged as a concern in first consultation). Combined with my AMH result though, today I’ve been told I’d be at very high risk of not responding to stims at all, high risk of no viable embryos, high risk at every stage basically - estimate at this point is 5% chance of success.
I’m beyond devastated. I’ve never heard of anyone having such a low AMH at my age. Or at any age.

Trying to decide whether we go ahead and give it one go anyway, a tiny chance is still some chance .. or to accept that it’s beyond unlikely to happen. Or both. I feel awful, like all hope has been ripped away and I don’t know where to start with dealing with this.

I don’t know why I’m writing this really, partly just a distraction from crying.
On the off chance anyone had results like mine, I’d welcome any advice on what you did next, or how you handled the grieving.

I haven't had results similar but I don't see why you wouldn't try. I know nhs need 3 eggs from ivf to allow you to have more than 1 ivf cycle but personally I would try as much as I could. If you could get nhs quickly then maybe do that or at least a private cycle but it is all personal and up to you. The %s are just that. I had a 55%+ chance of it working and it did then I lost it and they don't know why. Yet I know someone who had a 20% chance and they have had a healthy baby before me. The numbers are on the low side but they exist so try what you can manage.

Sorry to hear about your results. My amh was 1 last year at 33 years old and I am going to start a cycle of IVF. I'm not getting my hopes up but the fertility clinic said that they don't know how people will respond until they try.

I have searched (Low amh and ivf) and there are some positive stories on mumsnet which might be worth googling to give you some hope.

Hi, I'm sorry you've had such a shock. I think there sre some private clinics that have good reputations for working with patients with low AMH, so it might help to look around to see if that would be an option - I thnk Create might be one? You could also look into natural or modified natural IVF, where the focus is on working with what you have and getting quality rather than quantity. If you do go for IVF, it might also be worth considering embryo batching, where you do several cycles to obtain embryos for freezing and then do frozen transfers - that could give you several attempts and potentially the option of trying to have more than one child using your current egg quality and treatment response, rather than having the added worry of whether there'd be a further reduction in your fertility before you'd be able to do more fresh cycles and transfers.

I'm sorry you have had this news, such a shock. I was given similarly low odds with a follicle count of 2, and I was nearly 40. In my opinion the percentages you get given are just a guide and the only way to know how you will respond is to do a cycle. Against the terrible odds I was given I decided I had to try and I went on to have my DD by natural modified IVF. Good luck OP xx

Hi OP I'm so sorry you're dealing with this - it knocks the wind out of you. I haven't experienced low AMH levels myself, but I know other women who have and some have done well - they've ended up with a few decent embryos each cycle as they've had a good conversion of number of eggs retrieved to blastocyst.

It's worth joining the Facebook low AMH groups as there are a lot of women in your position.

Lastly, this doesn't have to be the end for you. I'd agree with previous posters that it's worth trying a round and then sense checking following that. Please be kind to yourself - I know how hard these days are

Hi. I totally feel you. 35 with 0.3 so, worst than you. I still don't have AF count but I already know it would be a total disaster. We have first appointment with the clinic on the 27th but we have no hope at all. With my partner already decided that if we are eligible anyway for ivf, we would proceed with egg donation if nothing can't be done with mine and his sperm is fine. You can look at that if you are up to it. I'm sorry that happened to you and totally feel you. For us it's been 14 months without even a chemical or whatever. Just doesn't happen

I’m so sorry OP, that’s devastating news to swallow. I am part of a local IVF group where I live and I know ladies who have had very low AMH below 1 and been successful. It really only takes one embryo, though it’s stressful having fewer bites at the cherry.
Also I know ladies who have conceived naturally with low AMH. AMH detects your egg reserve and so would predict your likely response to IVF stims, but if you ovulate every month there is, in theory, still a shot.
Lastly, the constant IVF mantra is quality over quantity. Better have a brilliant egg that makes one embryo that will stick rather than retrieve 15 eggs that can’t even mature.
if you haven’t already, do check out “It Starts With The Egg” by Rebecca Fett. It’s about improving egg quality which is a huge part of the game.
Take your time to proceed and grieve, I know it’s tough news. But I don’t think this means you have no hope xx

Sorry, I meant PROCESS and grieve xx

Just updating this thread in case anyone is searching for similar stories. I did 3 rounds of natural modified IVF with Create. Although I wanted to do them back to back, it took 8 months to do 3 cycles, several cycles were cancelled for various reasons. After 3 cycles, I only ended up with one day 3 embryo. I had no hope left and had accepted it wouldn’t happen, but we transferred it, and I’m now 8 weeks pregnant.
It has been a very long, and very difficult process. I’m more anxious now than ever and I don’t think I’ll be able to relax until the baby is here, but even being pregnant is so much more than I expected, or dared to hope for, when I wrote my OP (or at most times over the last year).
Best of luck to anyone in a similar position, feel free to message me if I can help at all. X

It's so lovely to read your update! Congratulations!!

Ahh this is a lovely update, congratulations OP! I'd posted upthread but my situation was very similar, one day 3 embryo out of 3 cycles, had zero hope on transfer day but that little embryo is now 2 years old. I remember the anxiety well, just take one day at a time xx

Thanks @ivfjourney2024 & @Seasideday oh wow, very similar stories! Sorry you had to go through it too, but so pleased you have DD. I’m sure the first trimester is nerve wracking for everyone, but in our positions it’s so much worse. One day at a time as you say, and if we make it to birth, then this hideous year will all have been worth it X

@HopefulElle lovely news, congratulations! And really great you updated the thread - you may help give someone hope years from now. So many times I've found old threads of relevance to me with no conclusion.