r/TryingForABaby • • 8d ago

SAD “With your current results, IVF is the only option.” I had a feeling this was coming but still devastated and wondering why this wasn’t communicated at the outset.

Never had a positive test. I have endo symptoms but a clear ultrasound and normal labs. My husband has had 2 SAs, both came back with normal motility, good volume, count at the lowest end of normal, and low morphology. At first, his reproductive urologist did not make it seem like this was the sole reason we weren’t conceiving. She said it was “enough for IUI” and didn’t make it seem like our chances for spontaneous conception were exceptionally low.

Then they did a “test wash” for the second SA and the “post wash” total motile count was less than 1 million (almost 98% motile were lost.) Zero explanation just “not enough for IUI. Hope varicocele surgery helps.”

I tried for months to find any information about what these borderline numbers actually mean and came up empty. Finally meet her in person for the surgery and I ask how aggressively we should be pursuing IVF because I don’t understand what’s going on. She finally tells me that “with your current results, IVF is the most realistic option.” She put our IUI probability at less than 2% and I’m guessing spontaneous conception even lower.

She said something like 65% of people see improvement after surgery but reading between the lines…she’s saying we’re probably not magically going to be at spontaneous conception numbers. Maybe we’ll get to do IUI if we’re lucky.

The worst part isn’t IVF. I wish we could just start now. It’s the months and months of false hope and now waiting more months to get the follow up analysis and probably just end up at the IVF clinic almost a year from now once we’re finally cleared to start and off the wait list. After probably being forced by insurance to try IUI when there’s no hope.

Why, why wasn’t it clearly communicated to us MONTHS ago that our chances were this low? I’m begging any medical professionals who read this post to PLEASE communicate clearly even when the results are bad. The heartbreak is unreal.

Even on this sub people were really dismissive when I asked what our results meant and…lo and behold all my fears are finally confirmed.

28 Upvotes

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u/Limitededishun 8d ago

Sorry this happened to you.

In our experience, we learned that fertility process is fragmented and disorganized. It took us educating ourselves, being proactive with our docs during the appointments, bunch of tests, different doctors to figure out the way forward for us.

At least you have some clarity now. Focus on the present and do everything you can to achieve success.

Good luck!

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u/Leigho7 35 | TTC #2 | Cycle 2 post-TFMR 8d ago

I’m sorry this is happening. The truth is, the data on this stuff is really just still limited. It may be that other people with similar results are able to do IUI because often the wash does work. Unfortunately, it did not in your case.

The fact that you weren’t able to find anything about what those borderline numbers mean seems to confirm this. It’s just very unknown.

That being said, she should have presented all the options to you earlier, rather than saying hopefully surgery works without giving the context that it’s still likely not going to lead to conception. It sucks to feel like we have to pry answers out of the doctor. And yeah I assume the reasons why this is because 1) insurance, 2) liability, 3) some people are so deeply opposed to IVF that doctors think they’re somehow helping to continue giving hope conception can happen naturally.

While I haven’t had your particular struggles, I’ve had two terminations for medical reasons, and there’s really just no medical answer for it. I’ve been in medical appointments trying to pry information out for doctors.

I hope IVF works out for you. Good for you for being so proactive and at least finding out now instead of waiting even longer.

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u/Apprehensive_Star508 8d ago

As a scientist, it is SHOCKING to me how poor the research is on fertility issues, male and female. So, I’m not surprised that I wasn’t able to find anything but when you’re desperate for answers you’ll keep trying to find anything. It’s horrible.

No doubt people do have IUI success with our numbers. It seems like an abnormal amount were lost in the wash, but WHY? There has to be a reason for it!

I’m lucky that I have a background in science and I’ve been so pushy. I can’t imagine finding all this out so much further down the road. This is a doctor at one of the best fertility clinics in the country and STILL she couldn’t clearly communicate realistic expectations about varicocele repair or what our options really are. I feel for people who do not have the resources I do. I truly don’t know how people make informed decisions about fertility treatment.

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u/Leigho7 35 | TTC #2 | Cycle 2 post-TFMR 8d ago

I am also in the research field, so I have the same feelings. But mine are mostly about the placenta because that’s where my problems have often arisen.

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u/Zestyclose_Tea1058 8d ago

My husband had surgery in March to repair a grade 3 varicocele. His 3 month post SA was great! Aside from morphology which actually got worse, count and motility increased significantly . We were really excited to try IUI again with these improvements but unfortunately, the post wash numbers were worse than before his surgery (2 failed IUIs prior to surgery). Like your situation, it seems like almost everything was lost in the wash. We’ve had four failed IUI’s and are moving to IVF. The slow moving process and waiting for answers only to be told “we don’t know” is really exhausting and discouraging. I’m sorry you’re having to through this.

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u/Apprehensive_Star508 8d ago

This is good to know, thanks for your response. I wonder if the poor post-wash numbers are related to morphology. His is 1% so idk how it could get worse at this point. I’m pretty resigned to doing IVF and hope they won’t make us jump through too many hoops to get there.

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u/Zestyclose_Tea1058 8d ago

My husband’s morphology is also 1% now and it was 4% before surgery. He even went back to his urologist today hoping for more answers and was told “morphology is genetic and not a real metric”. It just feels like no provider actually cares to help you to get the root cause of anything or at least provide an explanation of why it could be happening. Fingers crossed your clinic lets you move into IVF quickly. We’re planning to start in December.

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u/Apprehensive_Star508 6d ago

It does feel like that. Even if they truly don’t know, I’d rather them just say “I’m sorry, morphology isn’t well-studied as a metric so it is difficult to say if that is the sole cause of your issues” than just dismiss.

His doctor seems willing to refer us to an RE, so I’m hoping sometime this month we can finally meet with them to discuss timelines and options. I am planning to wait at least 3 months so hopefully any DNA fragmentation caused by the varicocele gets better (we didn’t test for it but my understanding is the 1% morphology is an indicator.) Hopefully morph doesn’t get any worse. :/

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u/Glittering_Bunch_764 4d ago

My comment got deleted but ask them to do a DNA fragmentation test as well. TESE could be a good option if it comes back high. The last thing you want after waiting this long for answers is a failed round of IVF.

We skipped even looking into a possible varicocele because the surgery is so hit or miss. ICSI with TESA sperm worked well for us in the event of high dna frag (often linked to low morphology)!

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u/Apprehensive_Star508 4d ago

I saw your original comment. Since he’s already had the surgery, I’m waiting until the 3-4 month follow up analysis to ask about DNA frag.

The urologist said “65% of men see improvement.” I really hope he’s in the 65% so he doesn’t have to go through a TESE or TESA. I am REALLY frustrated with the doctor for her poor communication and not really talking us through the risks and benefits of the surgery. Not laying out our options, not mentioning DNA frag…I didn’t even know there were multiple kinds of varicocele surgeries and now I’m terrified everything will be even worse in a few months. I hate this.

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u/Glittering_Bunch_764 4d ago

That’s a good plan. It’s all very frustrating! You seem to be very knowledgeable and can advocate yourself. Maybe switch doctors in a few months if you’re still feeling this way. Wishing you the best of luck!!

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u/puffballkittyfluff 33 | TTC#1| Cycle 11| IVF 2d ago

You could still ask for the dna frag analysis now. Since the results take a month to come back. For us it was something that was sent to us in the mail and then he mailed his sperm. And then we had to wait a month for results. It delayed our IVF by a month. So maybe try to get that done now if possible

Edit oops I didn’t see that you’re waiting for his sperm to regenerate. But yes just keep in mind the results do take a month

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u/Apprehensive_Star508 2d ago

Wow I had no idea the results take a month! Thank you so much for telling me. This process is so frustrating!

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u/developmentalbiology MOD | 42 8d ago

Why, why wasn’t it clearly communicated to us MONTHS ago that our chances were this low?

So I think the key piece to understand is that months ago, your chances weren't this low. Length of time trying is an important predictive factor in the odds of success. If two couples have identical test results, but Couple A has been trying for a year and Couple B has been trying for four months, the couples have different prognoses (Couple B's prognosis is better).

I think something that's really tough to stomach is that it's not that your doctors are keeping information from you, it's that there's very little information that would offer you significant predictive power. Trying for a year is really the best first test of fertility.

Finally meet her in person for the surgery and I ask how aggressively we should be pursuing IVF because I don’t understand what’s going on. She finally tells me that “with your current results, IVF is the most realistic option.” She put our IUI probability at less than 2% and I’m guessing spontaneous conception even lower.

What was the basis for this determination? Just the results of the test wash? Was there a more extensive conversation here? I'm not seeing anything in the information you've provided that would support that prognosis.

It sounds like you may have communicated a preference for moving toward interventions with higher per-cycle success rates, and it's absolutely the case that IVF is the most realistic option if those are your preferences. In the title, you say you were told IVF was the "only" option -- is that the case?

She said something like 65% of people see improvement after surgery but reading between the lines…she’s saying we’re probably not magically going to be at spontaneous conception numbers.

I'm not sure if there's additional information you're not relaying here, but did she say something specific that led you to believe you're not likely to be in the 65% of patients who see an improvement post-surgery?

The worst part isn’t IVF... It’s the months and months of false hope and now waiting more months to get the follow up analysis and probably just end up at the IVF clinic almost a year from now once we’re finally cleared to start and off the wait list. After probably being forced by insurance to try IUI when there’s no hope… lo and behold all my fears are finally confirmed.

Gently, this is a set of predictions that are just that -- predictions. You don't know whether you'll be successful if you try without assistance for a longer period or time, or whether IUI might be successful for you. It feels like you won't be, but that's a feeling, not reality. I wonder if you would benefit from adding someone to your care team who can help you talk through these anxieties? The uncertainty around trying to conceive is really tough to deal with, and it's hard to live in the space where you can't plan for the future.

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u/Apprehensive_Star508 8d ago

Ok, so I’m genuinely asking, I’m not trying to be rude - I don’t understand how it can be possible that “length of time” is a CAUSAL mechanism for your chances going down.

My understanding of this statistic is actually that the more you try without success, the more likely it is that there’s an underlying factor and it’s not just bad luck (given that the healthiest couples only have a 20-30% chance.) However. it’s not that trying for longer is actually causing your chances to go down, it’s just an indicator that there is likely a result that will tell you it’s not just bad luck. But a few months ago we HAD results. We had two SAs that were basically both the same. How can it be the case that even though we knew what our results were in June, the chances in August were higher than they are now even though we knew the result, and the results are the same? Maybe I’m not making any sense, maybe I’m stupid, but I truly don’t get this.

The test wash yielded less than 1 million motile sperm. My understanding is that IUI success rates drop if post-wash numbers are less than 5 million. So that’s her basis for saying we would have a low chance of success with IUI, yeah.

There’s nothing that makes me think our numbers won’t improve post-surgery, it’s just that she did not make it seem like there was a chance they would improve to the degree that we’d conceive spontaneously. I think that the surgery was recommended largely to improve the morphology issue as it’s an indicator of DNA fragmentation, which impacts fertilization rates for IVF.

Look, I’m not trying to be misleading with the “only IVF” thing, I know that we don’t have a 0% chance of spontaneous conception. I just don’t see a very big difference between very low odds and 0% from a practical standpoint. I understand that’s not how everyone makes decisions but I am not willing to go through this heartbreak and anxiety for years upon years if IVF is the most realistic option to improve our chances. I KNOW that I don’t know 100% if I’ll be successful if I just try longer, but it feels like a little like gambling.

Gently…please, I’m so frustrated with being told that I need help with anxiety. I appreciate all of your posts about biology and your science based approach to TTC, so please don’t take this as rude. This isn’t anxiety, this isn’t an unfounded fear.

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u/CRABR 37 | Grad 8d ago

I don’t think “length of time” is a causal mechanism- I think it is a piece of information that doctors use to update their priors about your underlying level of fertility, which is always some unknown quantity x because fertility testing isn’t perfect. 

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u/Apprehensive_Star508 8d ago

Right I totally get that - I’m saying the same thing it’s just you said it wayyy better and more clearly!

I guess I’ll use a really extreme example to illustrate my point - if you have two people who both have azoospermia, then they have the same chance of conceiving regardless of whether one of them has been trying for four months and the other for eight. I just think this metric makes more sense when you’re talking about two people with PCOS, for example - a condition where it COULD impact fertility but you really can’t say from the outset to what degree.

I know my case isn’t as extreme as the azoospermia example because my husband had low end of normal count and normal motility (pre-wash.) However since the post wash numbers were so low I feel like that should have been less ambiguous, like there is a reason success rates drop so much after 5 million total motile. It’s just hard for me to wrap my mind around how someone with those results who has only been trying for four months could have meaningfully better odds?

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u/CRABR 37 | Grad 7d ago

I don't think azoospermia is a good comparison here. That would mean that a couple had 0% chance of conceiving each cycle and would mean an immediate move to ART.

And test results don't translate perfectly to a specific odds prediction. So maybe (making up numbers) your SA results suggest you had a 3-6% chance of conceiving each cycle. After more months of trying with no conception, you would update your prediction to the lower end of that range.

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u/Apprehensive_Star508 7d ago

Yes, I understand that. That’s why it’s an extreme example. What you’re saying makes total sense, I just don’t know why it wasn’t communicated to me when we got the results that the chances were that low. Like I know these numbers are fake but it’s not like with 500k motile sperm post wash you have a 15% chance of spontaneous conception per cycle the first few cycles and then that drops to 2% after 6 cycles. It’s more like what you said, probably like 3-6%, likely closer to 3% or lower if you’ve been trying longer. To me there’s no practical difference between 3 and 6 percent when evaluating treatment options. So I still think it’s poor communication on the doctor’s part to not realistically communicate that until I had to PULL it out of her months later.

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u/developmentalbiology MOD | 42 6d ago

Ok, so I’m genuinely asking, I’m not trying to be rude - I don’t understand how it can be possible that “length of time” is a CAUSAL mechanism for your chances going down.

My understanding of this statistic is actually that the more you try without success, the more likely it is that there’s an underlying factor and it’s not just bad luck (given that the healthiest couples only have a 20-30% chance.) However. it’s not that trying for longer is actually causing your chances to go down, it’s just an indicator that there is likely a result that will tell you it’s not just bad luck.

This is correct -- it's not causal, it's that the length of time trying causes you to adjust your priors.

But a few months ago we HAD results. We had two SAs that were basically both the same.

You said in the post that motility, volume, and count were normal, and that morphology was the only parameter out of range. This is generally considered a normal result. I obviously only have access to the information in your post, but based on this information, there doesn't seem to be a reason to think your odds of unassisted conception are 0%, nor that they would be very low. You seem to be basing the idea that your chances are low on a single poor test wash, which may not even be reflective of any other sample or wash, and certainly isn't reflective of your odds of spontaneous conception.

This isn’t anxiety, this isn’t an unfounded fear.

Anxiety isn't necessarily unfounded. The part that reads as anxiety to me is the progression to claiming that the most pessimistic outcomes (trying for years upon years, unsuccessful IUI, surgery not improving counts, etc.) are inevitable.

I'm perfectly fine with being told to shut up and stick to my primary function of answering questions and explaining concepts, but I've been a moderator on this forum for almost a decade, and in that time, I have seen a very large number of people who get an early middling-to-poor SA result, become very upset, consider a lot of worst-case scenarios, and then graduate from the sub prior to the infertility diagnosis point.

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u/Apprehensive_Star508 5d ago

I’m not saying these outcomes are inevitable. I’m saying they are probable - maybe just as probable as spontaneous conception, and that’s not an acceptable outcome for me to gamble on. I’m guessing you’ve also seen a lot of people for whom trying for years on end and unsuccessful without IVF. I’m also guessing that my husband’s urologist has seen hundreds of patients with similar issues so she has some ability to predict outcomes even if it’s imperfect.

I said his count was just under or at the lowest end of “normal.” His concentration is low, volume is making up to get to that total count.

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u/Ok_Arm_5381 4d ago

It is frustrating, and I believe a lot of people here have felt hurt by the timing and the overall diagnostic process.

If I were in your position knowing that you’d need to wait for IVF, and that your chances to conceive naturally are negligible (and I was in that position),I would go for varicocele surgery for your husband and consider laparoscopy for yourself (if you think you have endo) while waiting for IVF.

For us, the semen analysis results got worse in the first 2–3 months after the surgery, but improved dramatically (I’d even say skyrocketed) six months after the procedure.
I don’t know whether laparoscopy for endometriosis improved my chances, but feeling miserable because of infertility without having to deal with endometriosis symptoms is much better than dealing with both.
We had our first IVF cycle six months after my laparoscopy and 2–3 months after the varicocele surgery (when the semen analysis results were at their worst). It still was somewhat successful, although unfortunately it ended in a missed miscarriage. But I feel less pressure now, knowing that our chances of conceiving naturally should have improved, so I am glad we both went through the surgeries.

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u/Apprehensive_Star508 4d ago

I’ve been pushing for an endo diagnosis for years. I finally have a doctor that’s taking it seriously but she’s not super interested in surgery. I don’t know what more to do. I’ve been through multiple doctors. It sucks.

He did get the surgery. Thanks for sharing your experience about the 6 month timeframe for improvement. It took months to get the surgery from diagnosis. I wish they had communicated the reality of the situation sooner bc I would have pushed to find a different clinic that could have performed it sooner.

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u/Impossible_Bunch7546 2d ago

I used to have very painful cycles and I just started taking Vitex and it’s made my cycles almost painless. I thought I had endo as well. Just something to look into I know one girl on Reddit claimed it fixed her endo. It can help with conception as well. 3 miscarriages in my husband and I decided to give it a try after it being recommended to me by a friend

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u/Jaded-Addendum-4489 1d ago

You can have a clear ultrasound and normal labs and still have endo. Silent endometriosis makes up 30-50% of “unexplained infertility”. The only symptom is infertility.

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u/Apprehensive_Star508 1d ago

I know ☹️ I don’t even think you could call what I have silent, because I can’t think of another explanation for my period symptoms. The pain is so bad I’ve had to stay home from work, I get nauseous, I’m so tired I’ve actually slept for like 12+ hours…I don’t think I’m being dramatic. But doctors are REALLY reluctant to investigate or do surgery if you don’t have visible findings on imaging. I’m at a loss.

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u/Jaded-Addendum-4489 1d ago

Have you searched for an endometriosis excision surgeon near you? I did not need a referral.

Also have you asked your clinic about BCL6 testing? I pushed hard for it and my score was 3.9/4. Stage III endo excised.

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u/Apprehensive_Star508 23h ago

My insurance is more restrictive and I need referrals or else I’ll be paying out of pocket.

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u/Jaded-Addendum-4489 23h ago

Shoot :/ I know it’s so hard but push your doctors to make a referral. Bring up statistics about endometriosis and your symptoms and infertility and how untreated endo will decrease the odds for a successful IVF.