Explanation for unexplained infertility

[Alwaysbelieving]

Has anyone been told they had unexplained infertility and then later down the line found out what the issue was? We were told ours is unexplained, apparently there aren’t any problems whatsoever but just had our 4th failed cycle. It’s so annoying as there must be something and just feel we will be repeating the process when there must be an issue somewhere. Our first FET was a chemical so I suppose at least I can say I’ve had one positive test in the 5-6 years we’ve been trying and the following three were BFN’s. I haven’t had my tubes checked for blockages or anything - is this worth mentioning or would it have been picked up by now anyway through the scans etc?

[Jess1981]

Sorry for your.chemical pregnancy ( it's rubbish we have 3 early losses and 1 late loss to complete our family) For 5 years 10 months we were told it was "unexplained " not a sniff of a positive test in all that time trying until I had a laparoscopy which diagnosed me with endometriosis and we conceived after the lap but it was a chemical pregnancy, which we viewed as huge progress .Following my third surgery I conceived my daughter Francesca who turns 3 tomorrow! Following Francesca we had a late loss of our daughter Amelia 2 more early miscarriages and had our daughter Eliza who is now nearly 4 months old. Without my endo diagnosis and treated we would not have our 2 beautiful children. I always feel endo is a good one to either diagnose or rule out especially with infertility. It should be part of infertility investigations, it's a shame it takes surgery to diagnose that needs to change so ladies get diagnosed earlier. A laparoscopy could check for endometriosis and tubes you could also have a hysterscopy with the laparoscopy at same time to check your uterus. Scans do not show everything . I would definitely look into investigations before doing anymore cycles/ it could be a simple "fix" Xx

[Alwaysbelieving in reply to Jess1981]

Thanks for your reply and I hope Francesca had the best third birthday 🥰

I’m so sorry to hear of your late loss of Amelia and your early losses I can’t even imagine how difficult that must have been. It’s such a cruel and unfair journey xxx

[Crie1983]

Hi, I had three cycles before finding out that my tubes are blocked. Unfortunately it’s never been picked up by my fertility clinic, I ended referring myself to a gynaecologist who then picked it up through scans, an MRI and eventually I had a laparoscopy and hysteroscopy a few months ago and my tubes are now out. Before that I was recorded as unexplained fertility!! I’m about to complain to my clinic as I’ve had numerous scans with them and not once was it picked up. X

[Alwaysbelieving in reply to Crie1983]

Wow it’s so frustrating isn’t it. I don’t understand why there’s isn’t more emphasis on trying to find out what the issues are. Surely it makes more sense and saves money and resources in the long run but what do I know 😂 It’s so sad we have to go through this on top of everything else! Xx

[Crie1983 in reply to Alwaysbelieving]

Completely agree. As if this isn’t hard enough. You expect the experts to explore and try and find a reason. X

[Tnthketnf]

Hi. I am sorry for your chemical pregnancy. My infertility is also unexplained. Unexplained doesn't mean that everything is OK. It means that everything they checked seems to be OK. There are cases where more tests will reveal something, so I would try and have tests for blocked tubes or a laparoscopy if you haven't had these. Sometimes there are no symptoms. And I have heard that block tubes can cause fluid to leak which causes failures. It's worth asking the question.

but back in the unexplained situation there are cases where the available tests won't show anything. This doesn't mean there is no problem because if there wasn't there would be a pregnancy in two years of trying. In my experience fertility clinics are not interested in identifying what's wrong, they just want to put you through repeated cycles until it succeeds. I guess they don't have any more tests.

Anyway I am sorry I didn't have a helpful answer. All the best with the next steps!

[Alwaysbelieving in reply to Tnthketnf]

Thank you and all the best with your next steps too xx

[Bhoga]

Like others have said, endometriosis could be one reason (diagnosis by lap)

Most endo patients also have adenomyosis and typically have displaced implantation window (diagnosis by ERA)

Uterine environment with 90% + lactobacillus is reqd for implantation, so check for hidden infection (diagnosis by Emma/ Alice or period blood test in Greece)

Immunes is another area to look at. Do you have high cytokines or matching genes with your husband? Immune/ Chicago testing, LAD testing, DQ ALPHA match

[Alwaysbelieving in reply to Bhoga]

Thanks for your reply. I’ll make a note of these and ask some questions as I have no idea if I have matching genes with my partner. Very helpful, much appreciated xx

[Millbanks]

Hi lovely, are you with the NHS?

They are great but notorious for not really investigating the problem.

I had unexplained infertility and after 4 egg collections and 6 transfers (2 with NHS / 4 private) we finally got our BFP.

The NHS didn’t do any further testing after the fails and due to covid we had to go private anyway, but I’m glad we did because we found the cause of my “infertility “ was excessively high natural killer cells that meant my body rejected every embryo we put back.

They put me on prednisolone (steroids) and intralipids for our 6th transfer to lower my immune system and it worked.

Xx

[Alwaysbelieving in reply to Millbanks]

Hey thanks for your reply. Yeah we are with the NHS, can the NK cells test and prednisolone be prescribed with the NHS do you know? Or would we have to go private? Can we even do private tests alongside NHS treatment? I guess I’ll have to wait for my follow up and see what they suggest and ask them about these things but it’s great to gather as much information as possible beforehand. This forum and you wonderful ladies are amazing for that! I’m so happy for you getting your BFP that’s amazing 😁 It really does give so much hope and the strength to keep going! Xx

[Millbanks in reply to Alwaysbelieving]

Unfortunately I don’t think it’s a test that the NHS does. If you wanted it doing I don’t think they can refuse you to go privately as they don’t provide it themselves.

There are places in london that will do those tests and provide Treatment without doing your full ivf cycle too

Xxx

[Peonie100]

Yes, we had unexplained infertility. Did all the usual checks, tubes were clear, everything was fine. Had one loss at 5 weeks, one loss at 8 weeks and one failed round of IVF. I refused to do my next FET without doing more investigations so I did the ERA EMMA ALICE privately which revealed I only had 35% lactobacillus in my endometrium. After a few rounds of antibiotics and probiotics I got my levels up to 77%. I continued with oral and vaginal probiotics and I fell pregnant the very next cycle. I am now 12+4 and I do believe this was the reason for our losses.

It’s a shame because if the information about all the different tests had been given to us sooner maybe we would have avoided all the losses and the 3 years of stress and anxiety. The tests also cost comparatively little to IVF, so would have saved the NHS many thousands of pounds.

Anyway, it’s worth looking into just in case there is an infection or bacterial imbalance which are usually symptomless!

Hope you find the cause soon. Xx

[Alwaysbelieving in reply to Peonie100]

Congratulations that’s wonderful news, I’m so happy for you but very sorry to hear of your losses. Thank you for the info. How did you know where to start with further investigations I think this is what I’m struggling with now? Which tests are best to have and how I even start going about trying to organise them? Did you have private tests done alongside NHS treatment? Or did the NHS help you organise this? Sorry for so many questions 😂

Enjoy sharing your wonderful news with the world if you decide to do so now you’ve hit the 12 week mark xx

[Peonie100 in reply to Alwaysbelieving]

Thank you so much. My scan is tomorrow and still very anxious so not sharing yet!

It was actually through reading all the helpful posts on this forum.

The NHS did the hycosy for me which showed clear tubes. Then after my failed round I put together a list of all the things that I wanted to test for (eg thyroid levels, vit D, NK cells, ERA EMMA ALICE) to speak to my NHS consultant about. Luckily the one I had an appointment with also ran a private clinic so he suggested I go for Emma/Alice/ERA. NHS did not help to organise but he did give advice on which tests were worthwhile or not (for me) and then I just organised them in the normal way with the private clinic. The tests cost about £1500 initially including meds and then my repeat biopsies were £200 each. I wasn’t charged for the initial consultation because the consultant already knew me but otherwise that would have been £350. So if you have the money I would say it’s worth it even if it’s just to rule some things out.

The plan was to get all the results back from these tests and then to start my FET round with NHS. So it wasn’t alongside, but my NHS clinic knew what was going on and they were waiting for me to complete these investigations.

[PaulaDag in reply to Peonie100]

Hi, do you mind me asking which oral and vaginal probiotics you took? x

[Peonie100 in reply to PaulaDag]

I bought the oral probiotics from the zita west website - a one month course. The vaginal ones were canesflor by canesten, which you can get anywhere. XX

[Fruitandflowers]

We remain unexplained - I still don't know how I feel about that as in one sense there's not an insurmountable problem but in another it means there is anything to 'treat'. My NHS and private clinic seemed to think it was a good thing and no matter what I asked they couldn't come up with anything else worth (in their view) testing or investigating, and said we should just get on with IVF. I know there must be something as we never had a BFP in 7+years trying. Our first FET worked (after two chemicals on fresh transfers) and I have always suspected I have a problem with progesterone which is something that was addressed on the FET, but my doctors thought it was just chance and numbers. I was very frustrated being unexplained and thought there was some issue that could never be fixed if they didn't know (or wouldn't do everything to find out) what it was, and that we were putting my body through so much and throwing all our money away, but IVF worked in the end so for us it was worth carrying on without an explanation. One thing I would say though is that after two chemicals I insisted on having calls and emails with my consultant and I really grilled him. He probably didn't love going through my list of everything I'd read online(!) and we didn't come up with much but it helped me feel more at peace that we weren't missing something.

[Alwaysbelieving in reply to Fruitandflowers]

Sorry to hear of you chemicals and so pleased to hear it all worked out for you in the end. I feel like I’ve maybe been a bit blasé and naive about my treatment so far and just trusted the clinic. Thanks for your reply it sounds quite familiar with regards to being told it’s down to chance and numbers and not much else to investigate etc. Hopefully I’ll get there eventually like you have 🥰 xxx

[Fruitandflowers in reply to Alwaysbelieving]

That's how I felt, especially after the first round when it hadn't gone as well as I'd been told to expect and the just keep blindly carrying on approach sat so uncomfortably with me. But it wasn't until after the second chemical that I really got fed up and stopped being 'polite' and trusting about my treatment. We didn't get any diagnosis as a result but it helped me to make decisions and get some autonomy back. x

[RebeccaTheo]

I also was told I had unexplained infertility as my HSG done by NHS showed tubes were clear 3 years ago, however in the intervening time both my tubes became blocked yet no one spotted it despite over 40+ scans (across 6 egg collections at two london based private clinics). I am now considering what to do. I have had both my tubes removed so now completely dependent on IVF. I’m understandably annoyed that no one spotted anything or suggested laparoscopy earlier.

My learning in all this is to sadly trust no one and question everything. I find getting a second opinion has been v useful but expensive.

Wishing you the very best of luck in your journey ahead.

Rx

[Alwaysbelieving in reply to RebeccaTheo]

Thanks so much and gosh yes very understandable that you are annoyed! I’ve definitely been too blasé up to this point and I will be asking a lot more questions at my follow up. Thanks for taking the time to reply and wishing you lots of luck with your journey too xx

[conceptionimpossible]

Unexplained infertility always feels a bit like they're adding insult to injury - as if it's not hard enough you can't even work out what to do to help! My husband and I were unexplained - we had the usual semen analysis, hycosy (which checks to see whether your tubes are blocked or not), ultrasounds, blood tests with the NHS but nothing. We decided to try a private consultation for a second opinion and they suggested that we could try some extra tests, AMH and a sperm DNA fragmentation test. The sperm DNA fragmentation test came back showing issues, so then we made some lifestyle changes with diet and exercise, my husband started taking Proxeed and I took Inofolic, then we went for ICSI and got much better results than we'd expected in terms of fertilisation and blastocysts and our first BFP.

Depending on which tests you've had, it might be worth seeing if you could get some more done? It's just stressful to feel like you need to research and get the answers rather than having the doctors offer them!

[Alwaysbelieving in reply to conceptionimpossible]

It really does! Thanks for your reply and so pleased you got your first BFP xx

[Rol81]

Hi x I’m currently with the nhs but self funding .

They did send me for the NK cells blood tests. (Nhs)

Resulted in high Nk cells and positive for lupus anti coagulant so I was referred to the recurrent miscarriage unit,

They prescribed me fragmin for blood thinning and hydroxycholiquine for the Nk cells.

[Alwaysbelieving in reply to Rol81]

Wishing you lots of luck in your next steps and thanks for replying. I’m deffo going to ask about NK cells at my follow up xx

[Rol81 in reply to Alwaysbelieving]

It’s just a blood test so nothing too invasive. Good luck x