RMC and IVF

[hicketypickety]

Hi everyone. Currently on this rollercoaster journey.

Timelines as follows
April 2017 DS born, now a happy and healthy 7 yo. No issues getting pregnant - conceived first time and a broadly straightforward pregnancy until right at the end.

Sept 2022 MC naturally at 6 weeks, again having conceived first time we tried.

April 2023 D&C at 12 weeks diagnosed as complete molar pregnancy. Conceived 2nd month of trying. Then on a TTC ban until December 2023 while they monitored the hormone levels post molar.

December 2023 conceived again first month of trying and had a natural MC beginning of Feb 2024.

March 2024 found out I was pregnant again first time we tried. This ended as a MMC and I had a D&C in April. Testing showed this had a trisonomy abnormality and therefore wouldn't have been viable.

Investigations so far

I had a whole raft of bloods privately - full RMC panel - in Feb 2024. Pursued those tests privately as NHS said they wouldn't see me in RMC clinic because they didn't consider the molar pregnancy as a miscarriage and therefore that reset the clock. This did eventually change as I got quite stroppy about that pov (not proud but had a strong feeling I needed to advocate for myself). RMC bloods didn't show anything that needed looking into further. In fact my AMH and FSH levels (redone again in June 2024) are "fantastic" for my age (I was 35 last week).

Husband has had full sperm analysis done privately in June 2024 including DNA fragmentation. Again zero issues and tests show his sperm is of good quality.

Went on a waiting list in April to see Prof Jan Brosens at Coventry/Warwick to do the NK cell tests with that initial appointment scheduled for end of July.

NHS appointment is end of August but I don't think that they will do anything different to the tests I've had privately - I will go armed with all information I possibly can to at least get a well informed second opinion.

It's been suggested (and I'm not clear on whether you can even get a diagnosis) that I might have super/hyper fertility meaning I get pregnant quite easily and my body doesn't filter out those "bad" embryos which wouldn't result in a viable pregnancy so that's why I tend to have early miscarriages. That person suggested we might be better off just biting the bullet and going to IVF with the PGT-A testing.

This is obviously a very expensive and emotional investment so we need to think carefully about it. My husband is really keen but I think he thinks it'll be a magic bullet, however he has also said he recognises that the toll of the IVF in terms of injections, hormones etc. will fall on me and not him so it's easier for him to come to that conclusion.

In terms of what I'm looking for from this post (apart from venting) is trying to understand whether anyone has a similar story and what happened to you / what route did you go down and also any experiences if you have been diagnosed with hyper fertility how did you go about that and what do you know because there's scant info on the internet!!

Thanks for reading if you're still with me.

Sorry about your losses. Given you've carried to term previously, and two of the miscarriages were for chromosomal reasons, it could just be tremendously bad luck/ an unfussy womb as you've mentioned. It will be interesting to see what your investigation comes back with.

My sister had 4 or 5 miscarriages in a row before her healthy baby. She got pregnant straight away each occasion she tried and was also told her womb might be unfussy about accepting embryos with problems/ that a high percentage of her eggs fertilised. Apparently sperm commonly meets egg when people are trying to conceive. When many months pass without a positive for a couple it's very likely there were problems other than failing to have sex on the right day. Fertilisation failure/ chromosomal issues etc.

The PGTA testing is a good way of avoiding miscarriages, however given your age and decent ovarian reserve, the majority of your eggs should still be ok. Are you already taking supplements to bolster quality?

Thanks @sirensong I have been a bit lax with the vitamins since finding out we couldn't try for a few months in April but I do take

• folate (I have an MTFR mutation that means I need to take a high dose)
• vitamin D
• coq10
• vitamin b6
• vitamin b12
• vitamin c and zinc complex

I have been thinking of adding vitamin E to that list too! There's so much info out there online. I did buy it starts with the egg but got a bit lost in information.

How awful for your sister but also very glad to hear she now has a healthy baby. I think my husband is worried about treating it as a "numbers game" and the effect that could/would have on my MH if we continued to miscarry.

The NHS have sort of told me once it happens 3 times it will probably just keep happening which was helpful

@hicketypickety Not sure if you'll still be on here as this is an old post but I wondered how things worked out for you? I'm really hoping things went well for you, this is a terrible situation to go through.

I've had 3 miscarriages all natural and all on the first attempt at getting pregnant - so assumed hyper fertility. I'm now 43 and each miscarriage has been complicated with rounds of surgeries and a full year of recovery after the last one. So I feel like we can't risk another one given my age and the time we have left (plus my MH which has suffered quite a bit!).

I'm in the RMC clinic at St Mary's in London and just had a third hysteroscopy after my most recent miscarriage to remove adhesions. I should be recovered and able to try again in 2 months (when they take the coils out).

We are now torn between trying naturally again - which seems silly to me but it's what every NHS consultant is telling us to do. They all say don't do IVF. Or we go for IVF anyway with pgt-a testing.

Or we go to see Dr Brosens for the stem cell test but it's a 4 month wait for an initial video appointments, then we have to do the biopsy and then it's a 6 week wait for results so that could be 6 months, potentially to find out there's nothing wrong!

So frankly I just feel so confused with the options. I wondered how your journey went.

@LJQI am still here! First of all I want to say so sorry for your losses and for the complications. Having been through losses the last thing you need after is complications in recovery.

I was seen at the NHS RMC at my local hospital in August 2024 (so not a specialist clinic like the Tommy's clinic at St Mary’s - unless that happens to be your local Trust). The consultant said I was an “interesting case” because all my losses were different and at least two had different chromosomal issues (the complete molar and T23, though we only found out about the T23 as this one needed surgery and they did the testing). She did, however, mention IVF to which I said there’s a hefty financial cost because we already have a child. She said that if you need PGT-A testing the funding for IVF works differently (if this is a consideration for you). I never found out if we’d need PGT-A testing because the bloods we had in May after the second bout of surgery were lost in the Kings/Guys cyber attack and we never got the results.

We did proceed with seeing Prof Brosens in July. I thought this was so worthwhile, we both felt listened to and heard for the first time in a medical setting. He explained the tests etc for RMC haven’t changed since they were first put forward as treatments and they don’t actually have much clinical evidence. When we got the results they showed my micro biome was well balanced and there weren’t any cellular issues which would prevent implantation or encourage miscarriage etc. though he said that my progesterone was low and prescribed 200mg twice a day from 3-14 days post ovulation then to up this to 400mg twice a day if this results in a positive pregnancy test.

I was fortunate enough to fall pregnant the first cycle following that protocol and it stuck, currently almost 32 weeks pregnant. I do genuinely believe I was getting the progesterone too late before and the embryo had already started to miscarry before I was able to get the prescription for the progesterone previously.

What is the NHS consultant rationale for saying there’s no need to consider IVF? Do you have any idea what your ovarian reserve is like? I know they can’t give an idea of quality of eggs. The only other consideration for me with IVF was not wanting to go down an expensive and incredibly emotional road when I didn’t know the reasons for my miscarriages…yes we knew that for two of them there were genetic issues but that only accounted for 50% of them - and we had no idea whether if they’d been healthy my body would have proceeded with the pregnancy (if that makes sense). So I felt I wanted to exhaust every last possible avenue before going down the IVF route because I didn’t want to pay £10-15k and end up in a miscarriage situation anyway.

I am not sure I’ve been any help, but happy to share more about my journey if it’s helpful.

This is hugely helpful, thank you so much. And congratulations, what lovely news after everything you’ve been through, I’m really happy to hear it.

St Mary’s is our local Trust so we’re really fortunate to be in that clinic but it’s also extremely busy with long wait times so it’s hard to have enough interactions to get really good advice.

My ovarian reserve is very low so I assume they are just thinking that IVF is expensive and challenging and the likelihood of success is very low. But to me it seems the likelihood of a successful natural pregnancy is possibly even lower considering my age / egg quality plus hyper fertility.

So I appreciate they are probably trying to save us money and effort with with IVF but all things considered I think the risk of another miscarriage might be the bigger problem (more damage to my uterus lining and if the recovery is 12 months again, I’ll be 44 by then).

BUT this information on progesterone is really interesting and I think it’s something I can ask St Mary’s about. I know they will monitor me every two weeks if I get pregnant but I can speak to them about progesterone testing now. And given what you’ve said we’ll get on the waitlist for Profesor Brosens now anyway.

Thanks again for taking the time to reply, I really appreciate it and I’m wishing you so much happiness with your new arrival!

@LJQ what is your AFC, AMH and FSH (if known)? Given how long miscarriages are putting you out of the game I'd suggest a private consultation to start IVF with PGTA.

Every month now counts. If this is very important to you and you can afford it IVF will buy you the benefit of time. It will prevent the transfer of embryos guaranteed to miscarry.

It would make sense to try naturally only if you were recovering from miscarriages quickly.

Hi thanks for the input.

My readings have fluctuated a lot between miscarriages but on last count, afc is 5, AMH is 3.2 and FSH was 11.7.
I’m well aware these are not great! But I am ovulating and menstruating regularly and we have got pregnant every time we tried so far, so there is still possibility.
I totally agree that every month counts and that’s been my thoughts exactly on IVF - it gives us more chances to create and test embryos in a shorter time frame than getting pregnant naturally once a year.

@LJQam I reading it correctly that you aren’t aware if there were any chromosomal issues which caused your miscarriages and the surgery has been for complications post miscarriage (scarring etc.?).

I think there’s definitely nothing to lose pursuing the progesterone testing in the short term ( through St Mary’s if possible AND booking a consultation with an IVF specialist (who will also be able to offer progesterone tests, the bloods themselves aren’t prohibitively expensive) whilst going on the waiting list.

In your position with a year recovery after each MC I would personally push every avenue as far as I could simultaneously if that makes sense because you’re right if you had another MC with a long recovery that is an additional complicating factor.

I wish they spent more time at school telling me how bloody difficult it could be to have kids, not YOU WILL GET PREGNANT AND END UP WITH A BABY IF YOU EVEN THINK ABOUT KISSING A BOY… (though clearly for some people it does work like that 😆).

Oh sorry I didn’t mention, only the third embryo was tested and there was a genetic abnormality. We don’t know on the first two.

And OMG yes! They only tell you how to AVOID getting pregnant. I also only ever heard “it will be hard to get pregnant after 40”. Not that you might get stuck in an endless cycle of miscarriages and tests and doctors and surgeries for years. I was so unprepared. And naive!

I think these results are enough to work with and you would not be wasting your time by trying an IVF round. You are obviously making blastocysts, which is an indication of quality even though the ones so far may have been aneuploid. On average one in five or six embryos are chromosomally normal at this age so a degree of luck is required. However I've previously seen people with 4 or 5 eggs retrieved get euploids.

@sirensong Thanks for this. I'm not sure what your experience is but you seem very knowledgeable :) We were assuming we may need to do several rounds and then test all the embryos at once (hoping to have at least a few embryos to test). Does that sound sensible to you?

@LJQ I've just done 3 rounds at the age of 42 so have spent several months immersed in the subject!

Planning for 3 rounds is a good idea - some places do a package (like my clinic at King's). If your ovaries unexpectedly don't respond to stimulation or you otherwise don't get on with the process you could choose to stop after one round.

It may be more affordable at some clinics to send embryos for testing after completion of all rounds but it is better not to do this because it would mean thawing and freezing the earlier round embryos twice, which could be detrimental.

Ah that makes sense. I hope you’re doing ok, it’s a lot to go through.
Thanks for the advice on testing, that’s really helpful to know. The clinic we spoke to wanted to test them all at the end (although we didn’t like that clinic much!) so I’ll investigate that further. Thanks again for sharing your experience, I really appreciate it.