Feeling helpless with unexplained diagnosis

[BritInNZ]

Hi everyone

As the title suggests, earlier this week we were diagnosed with unexplained infertility after a year of trying. I am ovulating, have a good AMH and tubes are patent. Husbands SA is good too.

My AF arrived today and the tears have finally came. I just feel so helpless and frustrated.

We're in NZ and because we don't have a diagnosis of something wrong, we don't qualify for publicly funded IVF for another 4 years and then there's another year wait too. The next step would be IUI if we get to June with still no luck (although he said if we get to 18 months without success he can say for sure something is wrong but public funding over here won't do elective surgeries to check if I have endo etc).

How did others deal with this? Any suggestions? I'm also spotting for days before my period so I've booked in to see my GP to see if I should be concerned about that (only started since my COVID vaccine).

From a very tearful and hormonal brit in NZ (who misses the NHS very much)

Hi, I’m sorry to hear you are feeling this way at the moment. I used to think is normal to have spotting before period but it turns out I have polyps in my uterus. Have you had an internal scan to check? After my surgery to remove them, I don’t spot anymore now. It’s worth looking into if you haven’t. Wish you all the best x

@DreamStar thanks for the response. I've had an internal ultrasound and nothing was picked up so I don't think I have polyps. Not that I want them, but would be nice to have an answer!

I vote get another opinion. Unexplained infertility isn’t even a real diagnosis, it just means that doctor couldn’t figure out the issue (s) and maybe another one can

I had spotting before af too. Have you had your progesterone levels checked? Mine were slightly and I was put on progesterone for the second half of my cycle and that did stop it. It didn’t help me conceive though.

Gosh that is quite a wait for treatment. We were also unexplained, I actually never had all the tests as our Dr explained his recommendation would be IVF at that point regardless of the outcome of further tests so we saved the money on those tests and went straight to IVF (also a Brit living abroad). IVF isn’t covered at all here so we had to self fund, is that an option for you?

Post should have said my progesterone levels were slightly low

@Betsyboo87 I had all my bloods done back in September and it was all good, but that was before the spotting started so maybe it needs checking again. We could definitely save and do IVF ourselves but I'm just not sure if I'm mentally 'there' yet if you know what I mean? It's such a process and to not be fully ready just doesn't sit right.

@NorthSouthcatlady we'll see another doctor in a few months but the only thing they think it could be is endo, but public health over here isn't doing elective laparoscopy so there's basically no way I can rule it out unless I save up $15k!

Unexplained sub fertility is no diagnosis at all and is sometimes given to couples when they have not been adequately investigated.

Who is treating you, is this all through your local hospital?.

You need a second opinion and as soon as possible. They talking about endometriosis (do you have symptoms of this and besides which you should not have any more surgery than absolutely necessary) and IUI (why this particular option?) also makes me think they do not know what to do with you at all.

What tests have been done to date for you both? Any tests done over six months ago should be discounted, you need up to date test results.
I can put up a list of tests that can get missed out.

@AttilaTheMeerkat I'm in NZ and there's only one option for us - Fertility Associates. We have had to pay privately for everything so far.

I don't have any major symptoms of endo. Some spotting before periods (doubt that's endo related) and enough period pain to need some paracetamol and ibuprofen but nothing unbearable. I used to get horrific period pain when I first came off the pill but this only lasted 6 months. He said if I did have it then it he thinks it would be very mild. NZ healthcare is so far behind that I wouldn't be considered for elective surgery to check for endo, id have to pay $15k to go privately.

They recommend IUI because I am not eligible for public funding for IVF for another 4 years (plus a year on the waiting list) so unless we want to spend $17k doing it privately, it's the next best option.

Starting in September, I've had:
AMH
21 day bloods
Internal and external ultrasound (showed septate but of normal variant)
HSG

Husband has had two SA and both very good.

Just at a complete loss and feeling very down with no clue what we can even do next. I'm seeing a nutritionist in a couple of weeks as a last ditch attempt but I'm healthy, a normal weight and active and so is my husband.

Sorry to hear you're feeling low. How old are you, if you don't mind me asking? With IVF the success rates do fall quite substantially once you're over 35.

Was your doctor saying that if you get to 18 months without success you would be diagnosed as having an issue and then you would be able to access publicly funded IVF?

In your position I'm not sure I would pay for IUI as the success rates are not that good, I'd save my money for IVF where you should have a good chance of success.

It seems that they have no idea what to do with you and its so very appalling.

"Mild" endometriosis can cause severe period pain to arise; it is when this becomes chronic that the level of pain lessens.

What was your amh?

@IceandIndigo I'm 29, almost 30. So waiting another 5 years for IVF is a very scary thought.

No he was saying I would then have IUI (privately). I can't have a laparoscopy as they're not doing elective surgeries like this on public health at the moment, so I'm pretty stuck.

@AttilaTheMeerkat oh really? My friend has chronic endo and is always in pain. I don't really have any pain, just enough period cramps to need paracetamol and ibuprofen in the first couple of days of my cycle. Due to not really having any symptoms, the Dr doesn't think I have endo, but impossible to rule it out without a laparoscopy which I obviously can't have (unless I find $15k!). My AMH was 22 which I was told is normal for my age.

You are still young. If I were you I'd probably try naturally for a bit longer - 6 months or a year - and use the time to put aside some savings for private IVF if you don't fall naturally, and also get on top of any diet and lifestyle factors that may be affecting your fertility - excess weight, alcohol, caffeine etc. Perhaps try some supplements like ubiquinol, high dose vitamin C and E if you're not already taking them. Get your thyroid function checked also.

I wouldn't get hung up on the differences with what you might be entitled to under the NHS versus where you are, a lot of NHS trusts are heavily rationing IVF these days and some won't provide it at all. Even in the UK the reality is that lots of people who want IVF have to pay for it privately.

@IceandIndigo thank you. I actually have a nutrition appointment next week which I'm hoping will help. Not that I eat unhealthily - we always cook from scratch and I regularly exercise and I'm a normal weight (size 8-10).

Will keep on it with my supplements and see how I go 😊 I think my thyroid was checked as I did tell the GP that my dad has an under active thyroid, so it's definitely a family history thing.

Oh wow that's so sad! It's so crap for people being stuck in limbo and creates a whole class divide between those who can afford it and those who can't. Luckily my mother in law has offered to help but for now I've said I'd like to continue to try naturally and hope for the best!

Hi everyone - just bumping this a bit in case anyone wants to jump on.

No update from me. Still not pregnant and still no idea why. I have been seeing a nutritionist as a last ditch attempt to fall pregnant before we have to decide whether we pay for IVF or IUI.

Some days are good, some I'm just so angry at the world. AF due in 11 days and I just hate these two weeks, I feel like a miserable cow for two whole weeks 😂 my husband has said he's also finding it tough now 😢

Hi @BritInNZ I’m in Ireland and there is no public funding for fertility treatment regardless of if you have an issue or if you’ve been trying decades. We all have to pay for it privately via loans/remortgage/savings

If I were you I would skip IUI and pay privately for IVF. No point in waiting any longer if you’ve been trying over a year.

Hi @BritInNZ i know this is an old thread but just wondered if you had any luck / ever got any answers? I am 30, been ttc baby number 1 for just over a year and am also really struggling with the diagnosis of ‘unexplained infertility’ and trying to work out what other tests / investigations I should be looking for!

@hopingforapeainapod I currently have a 10 month old son! I never did find a reason for unexplained infertility but was prescribed letrozole as a last resort before going down the IVF route and it worked the first time. It ended up we were TTC for about 18 months before I fell pregnant. I am in NZ though and they don't abide by NICE guidelines - I don't think they offer ovulation support for unexplained infertility in the UK?

Hi @BritInNZ thanks for getting back to me! Huge congratulations! ❤️ I hear lots of mixed things tbh - some doctors seem to see no point in Letrozole if you are already ovulating whereas others think it’s worth giving a go anyway - I think I’m going to push for it in the New Year because I am desperate to try something before IVF - seems like such a big jump otherwise! Out of interest did you ever get to the bottom of the spotting before your period?

@hopingforapeainapod yes definitely worth a shot! I'm proof that it can work even if you don't have ovulation issues. No I didn't, it was very odd. No issues since I've had my son either!

@BritInNZ interesting - I get it too and wondered if it was low progesterone but had a blood test and my levels were fine - must just be one of those things! Here’s hoping I can get my hands on some Letrozole and 2024 can be my year! 🤞

@hopingforapeainapod good luck! And just know now you're TTC, the worry never stops. Worrying about falling pregnant, worrying about pregnancy, worrying about your baby 🤣 but it's all worth it!