Age 28, low AMH and think I made a mistake going private first

[Nessie2395]

Hello

I'm 28, and have low AMH and endometriosis.

When I was 25 whilst under investigation for endometriosis, I paid for an AMH test via the NHS and it came back as only 5 pmol. I was devastated and the gyno consultant was very bleak, he said that I had the fertility of a mid 40 year old and that the eggs I have left are unlikely to be any good and that I should expect the worst. They would be the 'bottom of the barrel eggs'. I also spoke to my GP at the time who said she wouldn't refer for IVF yet (we had never tried naturally so fair enough!!) but that the waiting list was about 2 years in my area.

With such a wait and a low AMH already my partner and I decided to freeze embryos privately for the future. They retrieved four eggs and very fortunately all became good quality 5 day embryos which were frozen.

After that I had a lap for endo on the NHS, I had waited 4 years on the NHS for that operation. Endo was found in a few places including my fallopian tubes

My partner and I have now been TTC naturally for 6 months after the lap with no luck. I'm so anxious all the time.

I now can't afford a FET, I spent all my savings on just the freezing. From what I read I am also now unable to get any fertility help from the NHS. I understand not receiving IVF from them but I may not even be able to get a HyCosy. I suppose I should have thought about this at the time but I was so panicked by the AMH result and the doom and gloom from the consultant that I went straight to private. I can't stop thinking that I did this all wrong, that I've messed up and should have gone to the NHS first even if it meant waiting 3 years. But I was 25 then, and ultimately we weren't ready for a child.

I know I am very fortunate in many ways as I have frozen embryos and I'm so sorry if I sound ungrateful . But I feel very alone, and at a weird stage where I can't relate to anyone. I can't relate to those with no known fertility issues who have only been trying a couple months but I obviously can't appreciate the devastation for all of you who have been trying for months/years.

Thank you for any reassurance that I haven't been completely stupid and I apologise sincerely if any of this is tone deaf ☹️

Hi @Nessie2395 I absolutely think you did the right thing freezing embryos when you did. We’ve been together since 21 and didn’t start TTC until 31 and IVF at 34. If we could have frozen embryos at 25 I suspect life could have been so much easier - and cheaper! So give yourselves some credit for making some mature decisions at such a young age and stop beating yourself up. If you’d waited for NHS treatment you might not have been able to make good quality embryos by then and would be in a much worse position now. A frozen embryo transfer isn’t all that expensive (I appreciate it’s all relative) so can you look into financing options, borrowing money from family etc. Even if it takes you a while to save up, just focus on the fact that you’ve got your embryos and while there are no guarantees, that is significant progress on the long and often winding road of infertility! Good luck.

@Sunshinebytheseaside

Thank you so much for taking the time to reply and for your perspective - it really helps a lot to hear that.

Good luck to you also! X

Does having frozen embryos count as having already had IVF? Could you still apply for the NHS path?

@Nessie2395 You absolutely did do the right thing. In my area one of the qualifying criteria for NHS help was having an AMH of 5.8 or above which ruled me out. I actually wish I'd gone private straight away.

Also depending on where you live you may still be eligible for NHS treatment even though you have had a previous private cycle. Search NHS IVF on the gov website and you should be able to get more info.

Yes, further to the above - check here for rules specific to your area:
https://www.gov.uk/government/publications/nhs-funded-ivf-in-england

You might have been a bit hasty but what's done is done. Your GPs advice was way off the mark - your eggs are not likely to be poor quality, quite the opposite considering your age. You just potentially have less of them but an AMH test alone does not give you the full picture. And a low AMH alone does not necessarily affect likelihood of natural conception, it just potentially lessens the timeframe in which you have a good number of viable eggs so is especially relevant if you want multiple children. Low AMH alone is not a reason to rush into IVF, but appreciate you have your endometriosis to consider as well. What was your feedback after your laparoscopy?

I know it is tough, but 6 months TTC is really no time at all. Something like 96% of people conceive within 12 months and of those who don't conceive in that timeframe, a further 98% will conceive between 12-24 months. The NHS won't refer you for investigations/treatment until minimum 12 months TTC at your age anyway. I would continue TTC for the time being and revisit a conversation with your GP in 6-12 months. You don't have to declare you have embryos created via private treatment and like others I am not sure that would count as private treatment in terms of NHS entitlement, as you haven't had any embryos transferred. Equally some areas will still treat fertility issues on the NHS even if people have already had private treatment. In terms of information about fertility and treatment, Robert Winston's 'the essential fertility guide' is an excellent, well evidenced resource (and is cheap), as is his website - the genesis research trust.

@sirensong hello, I'm not too sure whether it counts, I assumed it did but perhaps not after reading other comments.

Thank you for your reply, I had no idea AMH was even considered in IVF funding. Hadn't even occurred to me. I'm really sorry that ruled you out, that must have been really difficult to hear and it seems so unfair 😞

I will take a lot at the policy for my area thank you x

Thank you for this link so helpful!!

Thank you so much for your reply, it's appreciated. From what I have been reading online you're right about AMH, I really wish the GP I had spoken with knew more. I think I should have been more questioning and done more research.

Feedback re my lap, I've been chasing a follow up appointment since January! I had the operation in november 2023 and still haven't had any opportunity to ask questions but fingers crossed I'll get a phone call appointment at least soon.

Thanks also for the stats and for your advice about seeing the GP in 6-12 months if not had any luck! I can see now my area doesn't fund NHS treatment if you've already had a self funded one, but as I haven't transferred embryos, I'll have to double check if that counts. And I will definitely check out Robert Winston.

I was told I had a low AMH and AFC age 30 after 18 months TTC with no luck. No other discernible fertility issues from routine tests. We decided to try a round of IVF as we had the money available, and we were lucky to have our daughter from this. We TTC a sibling for 12 months with no success and had 3 failed rounds of IVF after this. I've just fallen pregnant naturally for the first time age 35 and all is looking well so far. I don't regret our choices as they gave us our daughter but suspect if we had just waited we would have conceived both naturally eventually, just perhaps not when we wanted to. Your age is very much on your side but I totally understand the stress and frustration it causes. Best of luck.

I was very similar to you, 28 with low AMH and stage 4 endometriosis, I quickly had surgery and then IVF but lost NHS funding by my second attempt as my FSH went above the NHS cut off, my AMH was close to the NHS limit too. They did allow me to use my funding for donor eggs at that point which didn't work either but I did eventually go on to have a donor egg son and then a natural conception the year after

I would say you have secured yourself the best chance with 4 frozen blasts, you have also given yourself a chance of a bio sibling which is something you may not have been able to do had your waited for NHS funding

That's a really interesting perspective thank you and I'm so pleased it worked out for you. Perhaps you're right, it just might take more time.

Thank you for your advice

Thanks so much for your reply, it seems we started off from a similar position. I'm glad it's worked out well for you in the end but what a journey.

Thanks again for your reassurance x