Diagnosis of “Unexplained Infertility”

[u/RedditUser93671]

Unexplained infertility as a diagnosis is frustrating in the deepest of ways. Every time we do another test, I keep hoping for an answer. Something to explain why it isn’t working. Something we can work on or set a game plan to work around. Without any true cause, it’s impossible to know what to do next and how to make things better. How can they not find anything wrong?

Our anniversary just passed. That marks 4 years of marriage and 4 years of trying to have children. In these 4 years I’ve had 1 chemical. That’s all, nothing else to show for it. We’ve done every test under the sun and everything is normal. My doctor has literally told me on numerous occasions that I’m not only within normal ranges but “optimal” and it couldn’t get better. My husband as well. We’ve done medicated cycles and IUIs. All have failed. My husband had over 100 million sperm AFTER washing in our first IUI and it still didn’t work.

Testing we have done with a reproduction endocrinologist and urologist include: confirming ovulations over multiple cycles, hormone testing at various times throughout my cycle over multiple cycles, ultrasounds for both my husband and I, bloodwork for both my husband and I, HSG, pelvic MRI to evaluate for endometriosis (my doctor does not recommend a laparoscopy due to unrelated medical reasons and yes, I know MRIs often miss endo ), multiple semen analysis, Sperm DNA fragmentation, and genetic testing.

We are not overweight, we are extremely active, eat well, don’t indulge in alcohol outside of special occasions, no drugs or smoking and we take appropriate vitamins/supplements. I’m just so lost. How can it all be normal and we still aren’t successful?

I guess the next step is IVF…

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[u/pinupcthulhu]

Fyi, MRIs miss the most common type of endometriosis, so you might want to try the other tests to rule it out. I'm telling you this partly because there's more targeted treatments for endo infertility, and also because half of IVF patients with confirmed endo had much worse endo after IVF, and even some of those who were asymptomatic before treatment suddenly were symptomatic. I hope you don't have this though! Wishing you the best. 

[u/RedditUser93671 → u/pinupcthulhu]

I know MRIs are not ideal for diagnosis, but that’s what my doctor recommended due to other medical reasons that I don’t really want to discuss here. There are also a lot of cases in which laparoscopies and other endo diagnoses can also cause silent endo to flair. So unfortunately I’m stuck between a rock and a hard place on this one. I think no matter which route I take, I’m at risk of cause something currently dormant to flair up. It’s extremely frustrating 🫠

[u/pinupcthulhu → u/RedditUser93671]

I mean, there's a blood test (US only iirc) and an endometrial biopsy that can rule in endo, so either might be worth doing. There's medications and supplements that treat endo; surgery isn't the only treatment. 

Even if you could have surgery, it's very much recommended by specialists to do several different treatments to tackle the disease from multiple angles anyway, in addition to treating the lesions themselves. 2/3 endo patients see their lesions shrink with medications including short-term suppression and/or timed letrozole cycles, so many don't go for surgery even if it's an option for them.

[u/S1nclairsolutions]

I recently learned something about fertility that I had no idea was even possible. Apparently, two people can both be perfectly healthy and fertile individually, yet still have difficulty conceiving together because of biological factors involving their eggs and sperm. In some cases, sperm may struggle to interact with or fertilize a particular person’s eggs, even when there are no obvious fertility problems with either partner. There can also be genetic or immunological factors that affect fertilization or embryo development. It’s fascinating how complicated human reproduction actually is, and how successful conception involves so much more than simply having healthy eggs and sperm.

[u/Select-Ad-4816]

Have you seen a NaPro specialist. Apologies if you already know all about this - I know it's frustrating to hear "what about..." when you've tried literally everything.

[u/RedditUser93671 → u/Select-Ad-4816]

I have not, but unfortunately there aren’t any near where I live

[u/mrspharmacist → u/RedditUser93671]

There are online ones

[u/Select-Ad-4816 → u/RedditUser93671]

Honestly you could probably go out of state to meet with one 3 or 4 times and spend less than a single IVF cycle. If finances are a deterrent and you have a bit more time (age wise) I would consider it. I feel the same as you, going to see a NaPro doc... sometimes I wish I had something like being overweight, drinking problem, caffeine addiction... something I could point to and investigate but as far as I know I'm doing "everything right". Which is so frustrating!

[u/NicasaurusRex]

First of all, I totally understand the frustration as I am also unexplained (and also didn't really get any answers after going through IVF). But I also wanted to give you some reassurance that IVF is designed to bypass a lot of different issues and it's possible (and even likely) to be successful even if you have no idea what the cause for infertility is.

I think it's important to understand the limitations of the testing we have available today and how much it actually can't tell you. There is no test for egg quality. We don't have a way to test if sperm can penetrate the egg. And even though an HSG will tell you that tubes are open, it cannot tell you if a tube is capable of moving around to catch the egg and transport an embryo to the uterus. A common belief is that a lot of unexplained infertility is inflammation, which can prevent embryo development or implantation, but what's causing it and how to measure it is a tougher question.

I'm hopeful that there will be medical advances in the future that can help explain more of these questions, but I also think that IVF is a very successful treatment right now regardless of the cause. Removing eggs from the body, choosing the best sperm and injecting it directly in the egg, then developing the embryo outside of the body away from inflammation, and putting it directly in the uterus once it's ready for implantation will get by so many different potential issues.

[u/Timely_Ferret7547 → u/NicasaurusRex]

Hey :) also unexplained infertility here! What answers did u gain from IVF?

[u/CheetahSure1802]

Same boat. My hair has started growing in surplus amounts with all the prenatal supplements lol! Almost 3 years have gone by, and no pregnancy.
Regular periods (26-28 day cycles)
No fibroids, polyps, clear HSG, multiple medicated Ovulation induction cycles, 3 failed IUIs with superb semen factors. We had 142 million after wash lmao.
My hypothyroidism is being treated with levothyroxine and stable asf, and now I’m simply pumping my body with vitamins for IVF.

I don’t know what to think about endo/adenomyosis. No symptoms, 3D ultrasounds clear as day, doctors don’t recommend laparoscopy for me either. I don’t want laparoscopy myself. Surgery comes with complications.

I know even after IVF, I might not be pregnant, but fingers crossed. I have to give it a shot. I’m planning for IVF on January. I just want a break and travel to some country for now, with the amount of grief I have.

[u/storytellerfox]

This sounds incredibly frustrating, and I'm sorry you're going through this.

I think IVF could shed some light on where the problem lies. Eg, if it's embryos arresting or poor quality or implantation failure, etc. I know this isn't much solace given how taxing the entire IVF process is, though. I wish we could all have quick and easy TTC journeys :(

[u/Internal-Ground2165]

Very similar. All tests come back normal if not great. Skipping IUI and going straight to IVF. I suspect mild endometriosis since I have always had bad period cramps but who knows. I do think there is a unique grief that comes with unexplained infertility. There’s nothing we can point to, no explanation, nothing we anticipated. It’s tough.

[u/Less_Window2319]

Unexplained totally sucks. I have now accepted that for a few cases the reason may not be ever detected and it makes more sense to move to IVF instead of doing diagnostic laparoscopy or hysteroscopy (in cases with no symptoms).
This is what I am planning to do next year - after crossing the cut off of 24 months.

[u/cignetsix]

As someone who is in a similar position, yes — it’s absolutely fucked. You’d best believe if we were men there’d have been research done to find the solution to this shit.

I don’t know what else to tell you but good on you for going through so much for this. It really is infuriating when the doctor looks at your results and shrugs and gives you this nothing of a diagnosis, and it falls to us to have to push for more testing and whatever.

One way or another, you’ll get there eventually. You got this.

[u/Reasonable-Regret-47]

This is super frustrating, but they just love it as a diagnosis. My lining is suuuuuuper thin; diagnosis? Unexplained infertility. Seems pretty explainable to me

[u/colonelfudge]

Hi I’m sorry. Also been trying for four years with three of those years working with an RE. Only other tests I can think of are clotting/immune panels, karyotyping, hysteroscopy, and biopsies to look for endometritis. These are often suggested on the IVF sub when individuals are struggling with success.

For us - we were unexplained going into IUIs and IVF. Like others have said, IVF helps bypass unknown issues. 95% of patients have a live birth within three transfers, but I forget if that stat is dependent on pgt-a testing. It is not a fun milestone but it is a great option if it’s available to you.

[u/foolforgabagool]

“Unexplained” infertility is a lazy and extremely problematic diagnosis, rooted in ignorance.

Over 50% of “unexplained” infertility can actually be explained by endometriosis (up to 80% in some studies).

Over 20% of women undergoing ART actually have adenomyosis, although that is likely a severe undercount.

https://pmc.ncbi.nlm.nih.gov/articles/PMC6419978/

Is your doctor who does not recommend surgery an REI, or an endometriosis excision specialist?

Because REIs are NOT endometriosis specialists and yet tend to demonize surgery. They do not have adequate knowledge of and experience with this complex disease to be making proper decisions regarding its assessment and treatment. I would highly recommend you consult with actual endometriosis specialists.

[u/stinky_cheese_woman → u/foolforgabagool]

It’s really not true that unexplained infertility is a “lazy” or “extremely problematic” diagnosis. The UI diagnosis reflects two things: 1) the scientific and medical understanding of infertility is really rudimentary right now. We will need years of additional research to get to a level of understanding of diagnosis and treatment to be where, for example, cancer is today. 2) Human reproduction is really crazy, messy, ineffective, and chaotic. There are so many known and unknown factors, it can be hard to know and point to any one specific thing as being “the cause.” Many, many people experience IF and go on to have a spontaneous pregnancy or success on a first round of IVF without ever knowing “why.”

It’s true that it makes sense to see an endo specialist for treatment of endo, but OP seems to be wanting treatment of IF, of which endo could potentially be a factor. In that case, it makes more sense to see an RE. Without getting into the weeds, there are reasons why an RE would not likely recommend an exploratory lap for endo dx prior to at least one retrieval if not all the retrievals the patient hopes to complete in their lifetime.

[u/No_Butterscotch7075]

I also had "unexplained infertility" for about 1.5 years. I agree with you, it is infuriating and I hated that my providers didn't take my requests for additional testing seriously. I have 1 LC conceived on the first attempt and have since had secondary infertility and 2 miscarriages, so I knew something was different. Switched clinics, they took me seriously with my requests for diagnostic testing. I had an endometrial biopsy and ultrasound scan; they found a polyp and endometritis. I am taking antibiotics to get rid of the endometritis and will have a hysteroscopy to remove the polyp. I am no longer "unexplained" and it feels so good. I was adamant that I would not be moving to IVF until I did all the testing I could possibly do, and I'm so grateful I found a clinic who listens. You could also request a biopsy with Receptiva, which is pretty accurate at identifying markers of endometriosis (more accurate than an MRI). Best of luck to you.

[u/everything-matterz]

Have you ever taken a breath test to check for SIBO? I am in a similar boat as you and decided to look into gut health more in case an imbalance could be affecting inflammation or possibly point to endometriosis (there's a lot of overlap between SIBO and endo apparently). It turns out I have both a bacterial overgrowth and an overgrowth of microbes that produce methane. My symptoms were not obvious to me at all. I sometimes have straining with bowel movements and some cramping and bloating after eating some meals, but that's about it.

Now that I know I have SIBO, I'm thinking that endometriosis is more likely based on the studies that show how frequently they go together. Just thought I'd throw this out there since it's a non-invasive, easy test, that could give you a little more info to work with.

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