Unexplained infertility

[magpie234]

Is causing me so much frustration. It is just… not a diagnosis. It is the absence of a diagnosis. We are doing ivf (1 fresh failed transfer, 3 frozen) but now looking into more tests as I simply do not believe we have just been unlucky after 2 years of trying naturally and no positive test.

My husband has a varicocle so despite his normal to good semen analysis we are going to a male fertility specialist to get a dna frag test done and see what else they recommend. Possible embolisation. Led by me - he is a very go along with things and wait for the doctors to tell him what to do type person but I cannot stand just drifting along with no answers or advocation. Especially as the doctors in our clinic are gynaes, there is no male fertility specialist! And they are half of this!

I on the other hand have no known issues. Clear bloods and tubes. Regular ovulation and periods. But next tests for me look to involve possible immune system or uterine receptivity issues.

Our clinic only recommends more tests after 3 failed transfers but this seems ridiculous to me…

Is anyone else here facing the dreaded unexplained ‘diagnosis’? Or were you and have you now found the issue/s? I think this is a particular subsection of infertility so would love to connect with others facing this frustration.

We’re in the same boat, it’s incredibly frustrating. It’s hard navigating that feeling that every ‘all clear’ or ‘normal’ test result should be good news but also desperately wanting an answer for why this is (or isn’t as the case may be) happening. Because then at least you’d have something to work with or try to resolve. You can medicalise it. Whereas I’ve struggled with the vagueness of there’s just something wrong with me/ with us. It’s almost like it’s who you are rather than a condition you have.

We know there must be a reason, an explanation but it’s just not one that we can access currently. I’ve had a lot of tests and no closer to an answer. Part of this journey for me has been learning to sit with a lot of uncertainty. it’s not a comfortable or easy place to be but I’ve got some level of acceptance with it as don’t really have another choice. I’m also aware from these boards that having answers or a diagnosis doesn’t always get you the result you want either so it’s kind of a crapshoot either way. Fertility counselling may help with some of this.

Absolutely push for tests, I have. It’s so important to advocate for yourself and in some cases people do find an explanation but that also might not happen.

We are very fortunate that we do have a child conceived through ivf (currently ttc #2) which has obviously given us hope and reassurance that it’s possible. But the question does still hang over me of why was this has been so tough.

@magpie234 what was your fertilisation and blast rate like in your first round and did you do IVF or ICSI?

@Strawberrryfields Thanks and best of luck for your next go. Your line about it feeling like it is something inherently wrong with us as people rather than a diagnosed conditon that we have really chimed with me. It makes it feel more personal rather than medical. I hate it.

@magpie234 Me too, it’s a horrible feeling. Thank you, same to you.

@magpie234 if your husband has varicocele, i really suggest he sees a urologist specialising in male fertility. If you are based in London, my husband was seen by Mr Tet Yap. He does NHS but if you can afford it, see him in his private clinic to avoid wait time. Husband had bilateral varicocele embolisation via NHS and also had his male hormone levels sorted. Prior to his, his sperm analysis were always normal and we were considered unexplained apart from my low AMH. Luckily i pushed for dna fragmentation which revealed a slightly higher than average dna damage. We were then referred to a urologist and we chose Mr Yap. For our second cycle, we used Zymot in addition to ICSI. So far, it worked. Best of luck OP.

@Ivf4203 Thanks so much for replying. Yes we have a consultation booked in with Professor Jonathan Ramsay in about a month’s time which I am really looking forward to (the things you never thought you’d say before infertility…). I have read good things about Mr Yap too. It sounds like we are similar then. I have a slightly lower than average amh of 11 but from what I have read that is more an indicator of ivf response rather than infertility. Interesting about the ICSI with Zymot - many thanks for this and so glad it has worked for you so far. We did get 4 embryos with basic IVF, which makes me hopeful we won’t need anything more, but haven’t tested them genetically so aren’t sure as to their dna quality. We’ll see what Prof Ramsay has to say and go from there I think. Best of luck to you too.

We were unexplained for years. Three rounds of ivf- husband had had sperm analysis and standard dna frag and all come back ok despite the fact we never really made more than 1 blast despite a good amount of eggs collected. Went to see Lynne chapman and she recommended the Extend DNA test (sometimes known as comet) and this showed that actually 86% of his sperm was damaged and our rounds had been a waste of time really! Might be worth asking Dr Ramsey as we used his clinic fertility solutions to do the test!

@magpie234 Thanks. Mr Ramsey was our first choice actually but at the time wait period to see him was up to 10 weeks (was approaching Christmas) so went with Mr Yap who we were able to see the next week and didn’t disappoint. You’re right in that amh is only relevant if doing IVF so it’s not the explanation for the lack of positive hpt if trying naturally for more than a year. It does sound like we are have the same circumstances although my amh was much lower 3.5 at the age of 36.
Four embryos from your first round was amazing result! I got four eggs from my second cycle and i remember sobbing when i was told post collection. From those four only 1 made it to embryo and that one is currently in my womb. Do message me if you have any questions. All the best.

So an update from us. We went to see Jonathan Ramsay who was the most amazing doctor I have ever met, so knowledgeable and also empathetic. He really made us feel listened to, to the point that I cried on the way home as I felt so much relief and validation (and yes also overwhelm at all the info). The appt was the culmination of months of research on my part, and obviously also years of ttc and never seeing a positive test.

He examined my husband and said his varicocele we already knew about was not in fact small and probably fine like others have dismissed it as, but large and ‘definitely relevant’. So, he’s had a dna fragmentation test done and we’re awaiting the results of that, along with some tests for infections in the microbiome etc. I will also be testing my microbiome but can’t yet as I’m on the progesterone pessaries ahead of our embryo transfer next week. Ramsay said that he is ‘80% certain’ the dna fragmentation results will be high so has already referred my husband to interventional radiologist Dr Steven Moser in London to embolise the varicocele.

IVF has been used as a solution to a problem on his side that is at least a contributing factor to our infertility if not the cause (I’m nearly 36 so my egg quality obv isn’t that of a 26yo). Varicocele treatment for fertility isn’t covered on the nhs, and even for our health insurance Ramsay said we had to say it was for pain not fertility (tbf it has been causing him some discomfort too). How dreadful is that? So the NHS will fund ivf cycles, putting it almost entirely on the woman, and investigate her to the hilt, but not take varicocele seriously and treat it.

We are hoping to have the embolisation booked in asap as it takes 3-6 months to see results, so we won’t want to do another ivf round until then. More waiting, more wasted time, for a problem that could have been treated decades ago (he’s had it since an infection caused it at 13!!).

I’m still processing the news, it feels like a loss. But I’m of course pleased somebody has finally listened (albeit it £2k+ later with all the tests too) and we now have a plan. The baby we have been trying for for what feels like forever feels a little bit closer today.

Nobody settle for unexplained as a diagnosis, it is not a diagnosis! All roads might not need to lead to ivf and ICSI.

@magpie234 pleased your appointment went well, best of luck with the transfer and if it doesn’t work then at the very least you have a plan of action x

@Ivf4203 Exactly. Lots to process but I always feel better mentally with a plan (and even better when it is actively underway) so it is relief to finally have one. Many thanks for your kind message. I am going to be telling everyone to get that DNA frag test early doors though - especially if there is a varicocele.

@magpie234 I’m really pleased you got some answers and feel closer to achieving your dream of a family ❤️

Perhaps your final comment was meant to be encouraging but I found it a bit triggering tbh. I feel it’s a bit unfair to suggest others with an unexplained diagnosis are settling. We’ve had many many tests, have spent hours speaking to medical professionals, doing our own research on the possibilities and spent thousands of pounds along the way. Our lack of answers are not through lack of trying. But we’re still left with this uncertainty. Every test has come back normal with no indicative threads to pull at.

Obviously something IS wrong that it’s taken so much effort for us to conceive, but who knows, maybe there’s not a test for whatever we have yet? At one point dna fragmentation tests weren’t possible.

Maybe with advances in fertility medicine - which is still such a new area (relatively) - in 10yrs maybe our infertility wouldn’t be unexplained? (I certainly hope so for anyone else in our shoes). Thankfully, there is ongoing research and more information becoming available all the time. But for now we are unexplained and we don’t have any choice but to sit with that right now.

@Strawberrryfields Thank you. I mean is highly likely there are other things at play too. With the don’t settle comment I just meant that if at your first fertility consultation you’re told it’s unexplained and to go straight to ivf, I would encourage people not to just accept that without researching or considering further tests. Obviously if you do do the research and further tests and nothing comes up, that’s extremely shitty and frustrating. But clearly you haven’t been settling with the ‘diagnosis’, you’ve been trying to find out, so you weren’t who my advice was aimed at. I hope you get some answers soon ♥️

Thanks for adding a bit more context @magpie234 I do agree with that. Too many doctors seem fine to brush patients off with this diagnosis. But yes there is another side to it too of those who have pushed and still come up with nothing. Anyway wishing you the best with your next steps, it sounds like a really positive appointment you had and lots of reasons to feel hopeful. ♥️

We're unexplained too. My ovarian reserve is very low for my age though. No other issues
We did IVF straightaway. 8 eggs retrieved. 6 frozen blastocysts
Our dd (4) was conceived naturally the month after a fresh failed.
We have been ttc a sibling since May 2023. Had a mc early last year. Nothing since. In 2ww for our second FET.
I've had no further tests, quite tempted if this transfer fails. It's a horrible diagnosis as there is nothing tangible to fix