‘Unexplained’ infertility yet our test results are great. Going for IVF but else can I investigate?

[Decaffe]

Briefly, for whatever reason, I can’t get pregnant.

The plusses
My day 3 and 21 bloods are fine.
My HSG was clear and my tubes are ‘perfect.’
My antral follicle count is good for my age.
My womb appears healthy with good blood flow.
By taking ubiquinol I now regularly ovulate on cd12-13
DH’s most recent sperm tests were phenomenal (after I gave him lots of supplements to get his morphology up).

The possible minuses
I have a small dermoid cyst on one ovary but apparently it would cause more damage to take it out.
I am approaching 40.
Although I have a 15 day luteal phase, sometimes I can start spotting from 10dpo.

We are commencing IVF soon but I am convinced that it won’t work. Something is clearly wrong.

I have never had a conversation with an NHS consultant. A nurse simply reviewed the tests then referred us for IVF.

The IVF consultant was lovely but our meeting was, understandably, all about the IVF process and not about what’s wrong with us.

I want someone to tell me what’s wrong and what we can do about it.

There must be something, they simply haven’t found it yet.

Any ideas please?

@sparechange who did you see for the immunes? What was the plan? Did you conceive with ivf or naturally? Sorry to jump on but we are in a similar situ and going to look into immunes!

I have had two embryos transferred from my first round but both BFN. My consultant now wants to explore recurrent implantation failure blood tests before my next transfer. The tests are nearly £1,000 so not at all sure what we are going to do. Sorry I don’t have better news

@Decaffe what tests are they? We are on repeat failure now too with 3 fails.

@Decaffe it's so rubbish isn't it. I hope you are okay xx

Just re-reading my OP. Unbelievably I am yet to receive my NHS consultant meeting, it’s finally scheduled for next month. I am going to ask for a laparoscopy to rule out endometriosis.

We have at least identified that the spotting before my period is a luteal phase defect (i.e. progesterone dropping). The progesterone injections kept it completely at bay!

Hi OP, I really feel for you. Unexplained infertility here and our first 4 transfers failed or ended in chemicals.
we had thrombophelia screening that came back normal but they said there’s no hard in blood thinners. Next transfer worked and we got our little boy and I’m now 19 weeks with a little girls. I start clexane injections 48 hours before transfer and continue to 36 weeks to prevent micro clots in the placenta.
no idea if it actually is the issue but it seemed a coincidence. The doctor said they honestly just never know sometimes ☹️

Yet to find out what the exact tests are (we only had the conversation the other day) but apparently some of them look at a possible immune issue (overactive immune system) and some of them will look at clotting problems. They’re just so expensive though.

That’s very encouraging @MrsT36. Do you mind me asking how much your thrombophilia blood tests cost?

Check;

your husbands DNA frag and if high go to a urologist

For you:
thyroid
immunes
infection in micro biome
lining and progesterone sufficiency
implantation window (ERA)
thrombophelia

I was told ‘unexplained infertility’ is a diagnosis. It’s just that the science has yet progressed enough to pinpoint the reasons for it.

@Decaffe wow, that's taken a while! Yes, push for a lap as it's something else to cross off the list. I had one for that exact reason (it was fine...no Endo)

@MrsT36 massive congratulations! That's wonderful news. It is worth chucking everything at it.

@WillandLyra thank you for that, that's a really helpful list, I'm going to screen shot it!

@Decaffe it was a while ago, it might have been £300 or they might have done it on the nhs. I think they were something the nhs can do as it’s just a blood panel. Might even be worth asking your gp if your clinic would accept the results.
My first round was nhs but I paid for the EMMA/ALICE test ERA and a hycosy? All of them came back perfectly normal and they were about 2k combined which was so frustrating.
I think they just thought we’re wasting embryos at that point so we’re willing to prescribe them even though my bloods seems ok. They said they don’t cause any harm unless you have other health issues xxx

It was very advanced, stage 4 endometriosis. The "dermoid cyst" was an endometrioma. The spotting for days before my period, the lower back ache, the dodgy period poos/pain... it's not "normal..." it was all the endometriosis.

Just thought I would update if anyone read this! Never accept 'unexplained' infertility as a diagnosis. There is always a reason.

I also had endo, which I think was the cause of our 'unexplained' infertility. Removal via laparoscopy and ICSI gave us our DS. Have you had removal and are you pursuing ivf again?

Never accept 'unexplained' infertility as a diagnosis. There is always a reason.

Wonderful that you have some answers OP. It eats you up and I know the strong desire just to KNOW. I hope you find ways round endo and have your babies. x

Just wanted to say, for anyone still trying, it is still possible to never get a reason, or never a clear cut one. Clexane for example was amazing for us in terms of getting further through pregnancies but wasn't a silver bullet and didn't stop miscarriages.

I used to feel that if I didn't have children it would be partly my fault for not trying hard enough on the diagnostic odyssey.

So I wanted to counterbalance the comment with permission not to know, if anyone needs that. If you are still on your journey and you don't have a good reason, or partial reasons, and things aren't working and you are close to the end of your tether- it's OK if you want to stop looking. It's a shitty thing that just happens to some people. Love to all.

I'm so glad you got an answer but it is awful it took so long.

Hi @Decaffe I hope you are well, i remember you on threads years ago after I had my miscarriage. I was in a similar position with unexplained infertility and then diagnosis of severe endometriosis, spotting and growing endometrioma. Anyway, I want to update that something finally worked for me and it was the supplement plan for endometriosis in the book ‘it starts with the egg’. I decided to follow this as a sort of last try before my surgery which was being booked in the next two months. Just for you or anyone reading this thread. Give it a shoT, even if it is to give your eggs the best chance before IVF.
(for more detail, my vitamin D i increased from 40 to 130 and dhea to the upper end of normal tested via medichecks. I noticed that in the 4 months of doing this my spotting stopped before my period from 4 to 1 or 2 days, my endometrioma also seemed to stopped growing. May be coincidence but i am convinced it was mainly the dhea for me and the vitamin d too. Happy to provide links of supplements to anyone reading this, nothing too expensive). I never once expected this day to come and had adjusted my life around accepting it was never going to happen. So fingers crossed for everyone!

Some females dont concieve til they have good feretin

Also my mate had 5 rounds of private ivf -
Miscarriage on round 3

I suggested some basic nhs tests to her - she has low iron - that's now being treated and high prolactin

Im on iron tablets

Im getting my prolactin tested this month

( had an early miscarriage last yr ).
I think i may have a progesterone issue

I also have hayfever and allergies

@ least progesterone and prolactin are fixable i believe

Theres a vit d and miscarriage link - i take daily vit D

I highly recommend hertility health - for hormone and fertility tests
Ive used them twice
You can transfer results to NHS after
150 gbp a time - money very well spent

I have a fibroid that ive nicknamed fred

I also have some cysts that im getting checked next month at gynae

Had a transvaginal last yr too

Glad to hear your good news

I also rate the it starts with an egg book

Hi @RosyappleA that’s so kind of you to remember me and it’s brilliant to hear your news! How far along are you now?

Actually, I have an update of my own! It’s very early days but I am 4w1d pregnant! The amazing thing is that we were due to transfer one of my frozen embryos next month. Never in a million years did I think I’d experience a natural conception! I am trying to take everything one day at a time for now, but I’m so pleased to have got this far.

Wishing you the very best of luck!

Congrats

@Decaffe I am so happy for you! I am too very early on like you so maybe this was just meant to be our year after all 😂. Wishing you all the best and I hope everything goes smoothly. I remember reading 100 threads on mumsnet and looking for updates so I hope someone sees these updates and feels somewhat hopeful.

@Decaffe i recognise your name too! HUGE congrats!

again for readers finding the thread… I also had silent endo
removed in October (that took 2 years on nhs from waiting for referral and then 8 month wait) and “it starts with egg” book fan over here!
my ivf appointment was 24th Jan but now
I am also 4 weeks one day after 2.5 years and wishing you the best of luck ♥️

Oh my goodness we are exactly the same number of days along! Have you joined the Sept 2024 thread @longingtobe23?