Unexplained fertility — finally found our answer. Immune infertility / IVF + ICSI??

[LovingLilacDuck]

** Unexplained INfertility, sorry.

Hi mumsnetters,

I have been lurking on this topic for a long time and finally have a reason to make this post. Me and DH have been trying to conceive for the past two years with no luck. No positive tests, anything. And we are not old (less than 30) so it’s not age related.

I did multiple tests, scans etc. and I was fine, apart from my AMH was considered “normal but on the lower side” for my age and doctors weren’t really bothered about it. DH also did multiple tests and they were fine. We couldn’t make any sense of anything and was getting quite hopeless… I bought prenatal vitamins (OVUM) to improve my egg quality and sort of help with my amh (not sure if it helped). On dh’s last test they included an MAR test — and to our surprise it came back positive. With really high (%97) sperm binding. So he has got antisperm antibodies and it highly is the reason for our difficulty with conceiving.

I am obviously in a bit of a shock, because I know there is no cure for it atm, apart from IVF with ICSI. And natural conception chances are so incredibly low which breaks my heart. I never thought we’d have to do this . So my question is is there anyone on a similar boat?

I am scared that because I have lowerish AMH IVF is not going to work/ we’ll have to do multiple rounds. I alteady struggle with mental health due to infertility so I’m not sure how I would cope with all this. Appreciate everyone’s help, tips and insights. Thank you.

Hello,
I am sorry you are experiencing this. I must admit, it’s the first time I’ve heard of this test. Is that included in a standard semen analysis test, as I would’ve thought that it’d be picked up pretty much straight away?

Hi,
Thank you for your reply. I don’t think it’s a standard test and perhaps they did it as a last resort. Because they just couldn’t find a meaningful answer to it at first — of course now we know.

Was this via NHS or privately? Do you think going down the IVF route will be best for you both? X

It was via NHS although the test was done in a private fertility clinic.

I still haven’t had the chance to talk to our GP but pretty much everywhere you look online says with this condition the only way to go is IVF…

I think ivf is going to be the way to go then. Do you have any concerns?

Yes I do actually. Mostly about the mental load, and telling people about it trying to explain everything etc. just feels so daunting. Also in case it doesn’t work I don’t know how I would cope with it, esp. being young.

It is mentally 'a lot'. I remember feeling similar to you, just not thinking I could mentally cope with it all as I was already feeling so sad about everything. For some reason, about 6 months later I was feeling stronger and went ahead with IVF. Physically, it was not as bad as I expected, but emotionally it is a totally rollercoaster. Constantly waiting for news from the latest scan/test etc. (we have done 1 round and it didn't work)

I did really enjoy stopping trying naturally during that time though. It felt like a weight off, and good to be able to hand over control to the clinic.

My clinic included 3 counselling sessions along with the package which I would definitely recommend using.

Have you had a follow up consultation since your partner's MAR result? (admit I also haven't heard of this test). You mention speaking to your GP - in my experience, they have been pretty useless and I'm sure I know more about fertility issues than my GP by now!

What would your waiting list time be? Worth putting yourselves on the waiting list anyway?

You worry about the mental load of telling people, etc - you don't need to share with anyone unless you want to. I only told a few people and was quite vague with timings.

Thank you so much for your reply, really appreciate it.

No, we haven’t had a consultation session yet as our doctor is away atm. But like you say, I am fed up with the GP and thinking of just getting private consultation. Everything just takes FOREVER with NHS which is such a shame. I lived in other countries before and it was never this way.

Not sure about the waiting list either, as nobody even talked to us about our results so IVF is not even considered yet.

You’ve got a massive chance of success with IVF due to your age (under 30). How low exactly is your AMH? Even if very low, meaning you recruit fewer eggs in an IVF cycle, those eggs are likely to be genetically good and produce good embryos (with the help of ICSI).

You can be strategic and bank lots of good embryos setting yourself up for multiple future children if you wish, putting yourself in a really good position compared to so many other IVF patients.

IVF is daunting at first but the actual stimulation process, egg retrieval and fertilisation cycle is only a couple of weeks. It’s very doable. In your position it would make sense to bank some good embryos ASAP.

This negative result could force you to take out the insurance process of banked embryos which many older women would love to have.

Since there’s a known issue can you not now just be referred and start the ivf nhs waiting list? I have v low amh plus was 35 when we started ttc, but when I say low I mean about 2.6 or 3.6 I can’t quite remember. Plus by the time ivf started I was 38 due to unforeseen health drama. So you’re in a really good comparative position. I’d say the hardest part of the whole ‘journey’ (sorry) was beginning it, I can understand why you feel anguished about it. But once you board, it’s honestly not that bad. I did 5 rounds due to my v low amh, was 39 at my last egg collection. But you’re a lot younger and I’m assuming your amh is quite a lot higher! I’m also 30 weeks pregnant. So even with shitty odds perseverance served us in the end.

Edited to add: when I say ‘not that bad’ honestly I think I could face anything and would choose much over returning to the years of trying and failing to get pregnant without medical support. By comparison, ivf has schedule, focus, beginnings and endings, and medical attention.

Thank you so much for your reply and your encouragement.

If I remember correctly my amh was 10.7 pmol. So not incredibly low, but slightly discouraging as they would normally expect someone my age to have a higher number. But I should rather focus on the quality of the eggs, like you say.

I think the only way for us to have any/multiple children is to have it through IVF with ICSI so I will look into freezing embryos. And get into the waiting list asap!

How lovely you are pregnant! Congratulations 🥰

My amh is 10.7 pmol so it’s not too bad, but not optimal for someone my age.

Thank you so much for your insights about the process. It is really good to hear that it only takes a a couple of weeks — not taking years like ttc for some of us!

Another question I’ve got in my mind is to whether wait for the NHS round (it might take up to a 1,5 years in my area and only offered 1 cycle) or just directly go for a private cycle? We can afford to go private.

And because I’m under 30 I am not technically in a rush but everybody suggests the younger your eggs the better, and hence not having a very good amh… What would you recommend? Can you get on NHS waiting list and still go for a private cycle?

@LovingLilacDuck just to offer a little bit of hope with the anti sperm antibodies as I was always looking for success stories when we were going through it. my husband has a high % of them them also. We had ICSI via NHS and I am currently 30 weeks pregnant and all going well. It is a mentally draining process but so worth it. I would recommend your partner to take impryl, dr Ramsey is one of the top male fertility specialists in the uk and it’s what he recommends

Also I would check as your area might be different but I was told we could have a private round whilst on the NHS waiting list and it wouldn’t effect us

Congratulations on your pregnancy! It is honestly such a relief to hear the success stories.Did you have to wait too long for the NHS cycle? I know it differs from area to area. And do you know why your husband have the antibodies, any trauma etc? And thank you for the recommendation, I’ll look into that 😊

10.7 pmol is more than enough for successful IVF. My AMH is 8 pmol and I got 10 eggs which resulted in 6 embryos (with ICSI). I’m 39 so unfortunately most of these are likely to be genetically abnormal. But at your age and with a higher AMH you’d likely get more eggs, more embryos and a significantly higher proportion would be genetically normal. You could get lots of good embryos with one or two rounds. You might find one round gives you enough, but you don’t know until you give it a try.

For NHS funding you could look for a private clinic nearby that accepts NHS patients and ask your GP to refer you under the Right to Choose pathway. I did that and got an appointment with Care Fertility within a few weeks. Create Fertility also take NHS patients, I’m sure there are others too.

@LovingLilacDuck thank you! We seen a private consultant first to get our referral for IVF as our GO just kept telling us to keep trying due to our age even though we had the ASA results but after that it was about a 4 month wait to see an NHS fertility consultant and then a 2 month wait to get started which I think was also slowed down a little by Christmas being in the middle so we were lucky waitlists were pretty short in our area but even that I appreciate waiting a couple of months feels like a lifetime when you want it so badly. We did have a few failed transfers and after them we seen a consultant privately to get us back on the list for the next transfer as the NHS was making us wait 3 months for a consultation to go on the list for our next transfer and then the wait once we were on the list was usually 3 months. We are in NI so our treatment was at an NHS hospital with a fertility clinic, I know some trusts in England still go to private clinics but get NHS funding so hopefully someone else can give better advice on that if you’re in England!

and no we have no idea why he has the antibodies it was really unexpected for us and we always thought we would get pregnant really quickly so it was a lot to deal with. Luckily they were picked up on his first semen analysis though. Do you what may have caused your partners?

happy to answer anymore questions you have!

Im in Scotland and we were told yes you can have a private round while waiting on nhs queue. The only caveat was that if you had frozen embryos you had to use them before nhs treatment, so your cycle had to be ‘complete’. Rules will be different everywhere! We managed to find a charity that had advocates for different areas who know the local health authority rules. Much easier asking a person than trying to fathom opaque rules. Maybe see if there’s something like that for your area? (I can’t remember how I found them, sorry! I’ll ask my partner if he does).
Waiting times will be different everywhere but I do know in England that it’s true you can choose your clinic once you have nhs funding (not true in Scotland). And a few English and Irish pals on here waited a lot less time than we did.

Just wanted to share my experience/feelings about IVF after infertility- me and my OH was talking about this just recently, we personally found the TTC journey before starting IVF much harder and lot less hopeful.
Don’t get me wrong IVF was hard, mainly mentally for us both but the structure and being told what the plan is helped me massively! Good luck with your journey and sending you lots of baby dust.