For Everyone with Unexplained Infertility Please Come in :)

[tikoberry99]

We were diagnosed with unexplained infertility which is so frustrating because there is nothing to "fix." I wanted to see how many ladies here were diagnosed with unexplained infertility and ask if there was anything your RE told you about this diagnosis that might be helpful to the rest of us. My first RE (the one that I actually did treatments with) had nothing to say. I went in for a consult with a new RE near my new house and he told me unexplained usually means the egg is too hard and the sperm can't get in, or the sperm don't have enough energy to penetrate through the egg. He said usually IVF is the only thing that works with success for unexplained. We went through two failed IUI's with clomid and since my fiance has "super sperm" he suggested we not pursue IUI's in the future. He was down for trying femara since he said it has higher success rates over clomid, but if 6 cycles of femara didn't work he would recommend IVF. 

So if you don't mind sharing....what has your RE told you about unexplained, what treatments did they suggest and did they ultimately state that IVF was the best treatment option for unexplained?

[theholmanherd]

I wish I could help you more. We didn't pursue treatments. We never had the money and then we decided to do FTA instead. If that one RE is correct, IVF with ICSI would fix that, right? I think that's the type where they directly inject the sperm in the egg. I hope you find a solution soon. (((HUGS)))

[tikoberry99]

theholmanherd I think if we went through with IVF we would do ICSI just to make sure.

Good luck with the foster program. My cousin just started fostering two little boys and she is the happiest I've ever seen her. It's such a wonderful route to take.

[twinkie0612]

We were originally unexplained, but have since added some diagnosis for me.

My RE originally suggested 3-4 IUIs then IVF. He basically said that since I ovulate each month and TI hasn't worked so far, he would recommend adding IUI. We did one IUI (clomid) with my OB before starting with the RE. We did 3 IUIs with my RE(one unmedicated and 2 with clomid and HCG trigger) before moving on to IVF. It was only once we started IVF we found out that I don't respond well to injectible meds and that I seem to have an egg quality issue (all of our embryos arrested in our first attempt at IVF). Also after my first IVF I was tested for immune issues and my NK cell came back high. We did 2 more IVFs with my RE before he gave up on us and did a FET with donor embryos at another clinic. After those cycles all failed we looked into more indepth immune testing and I got the rest of my immune diagnosis.

[tikoberry99]

Thanks twinkie0612 for your response. I'll ask my RE about specific immune testing.

BTW is your birthday June 12?

[lemonliz]

We are not unexplained (MFI + DOR/endo) but, I have heard that often times "unexplained" is just a way for them to say they haven't quite figured it out yet. The reason IVF is so successful with unexplained is because often the explanation comes during the IVF cycle and there are ways to get around it, like ICSU, whereas with IUI it's all kind of guess work because they can't see what's going on, outside of monitoring ultrasounds. And sometimes things like PCOS and endo don't present themselves in the typical way and can evade proper diagnosis.

What was your response like on Clomid?

You should definitely talk to calindi (warning - SAIF). For the most part (except for an initial possible MFI dx that seemed to maybe not be such an issue later) I think they were unexplained and she did 3-4 rounds of IUI before getting KU on her cycle with injects. Her story is one that is hopeful for unexplained and continuing to pursue IUIs!

[calindi]

If you don't mind a grad peeking in, we were unexplained. I don't have a siggy here yet, but I am 29 and DH is 31. Everything came back well within normal. DH's numbers weren't awesome but not enough to qualify for MFI and they got significantly better with lifestyle changes and vitamins.

We had success with Follistim and IUI after failed unmedicated IUI, TI with Follistim & Femara, and IUI with Follistim & Femara. For whatever reason, Femara thinned out my lining but Follistim alone made it nice and plump. That seemed to make the difference for us.

That said, IVF and a Follistim IUI are not that different in cost for many people, making IVF the better choice for getting the best chance for your money. We had some coverage for IUIs that made a Follistim IUI cycle only about $1000 OOP for us, whereas we would have been 100% OOP for IVF at a tune of around $7k or more, so it made sense for us to try it. If I were 100% OOP for either, I would definitely go for IVF.

From what I understand, unexplained can be any number of things. Egg quality, endometriosis that hasn't been diagnosed, fertilization issues, lining/implantation issues, "weak" ovulation, hostile cervical mucus, etc. For us, we may never know what caused us to go 2 years without a BFP but if we have to resume treatment when it's time to try again, I will go straight to Follistim and IUI. If that fails after a few cycles, we'll move on to IVF. Femara didn't work for me at all and I doubt Clomid would be worth it (especially as we have some prescription coverage to make that cost negligible for us OOP).

[tikoberry99]

lemonliz I responded really well to clomid in regards to my follicles. I had 3-4 mature ones each cycle and my progesterone came back in the 40's all three cycles so I know I had a strong ovulation. My lining did start to deteriorate though after the second cycle and it was recommended I move on to injectibles, but I moved far away from my RE and started a break so I never went through with the hard drugs.

calindi thanks for your response. That is the big question....try with injectibles or go straight to IVF. So frustrating when everything is OOP. I'm so happy you had success and I might ask my RE about Follistim and IUI.

[twinkie0612]

@tikoberry99 Nope, my anniversary is June 12th.

[tikoberry99]

twinkie0612 I wanted to check because my birthday is June 12 lol!

[kristin1k]

Jan 21, 2015 15:01:58 GMT -5 lemonliz said:

We are not unexplained (MFI + DOR/endo) but, I have heard that often times "unexplained" is just a way for them to say they haven't quite figured it out yet. The reason IVF is so successful with unexplained is because often the explanation comes during the IVF cycle and there are ways to get around it, like ICSU, whereas with IUI it's all kind of guess work because they can't see what's going on, outside of monitoring ultrasounds. And sometimes things like PCOS and endo don't present themselves in the typical way and can evade proper diagnosis.

What was your response like on Clomid?

You should definitely talk to calindi (warning - SAIF). For the most part (except for an initial possible MFI dx that seemed to maybe not be such an issue later) I think they were unexplained and she did 3-4 rounds of IUI before getting KU on her cycle with injects. Her story is one that is hopeful for unexplained and continuing to pursue IUIs!

I am also diagnosed as being unexplained, super frustrating because many believe that means "everything is normal" when in reality it means the issue just isn't found yet. What lemonliz said is absolutely correct and exactly what my RE told me. The lining of the egg and other more complex situations can't be found by the testing and IUIs prior to advancing to IVF.

[Deleted]

I'm also unexplained, and I have to agree with with lemonliz said. Because of our diagnosis my RE pushed us quickly through 3 rounds of IUIs w/ clomid, simply to get us through for insurance to cover IVF. Clearly the issue is something they haven't found in testing, and the chance of IUI working for us (if I remember correctly) was 10-17%.
We're on to our first round of IVF now, so far we've got 12 out of 21 eggs fertilized, there was 18 total but 6 weren't mature. Now it's a question if they all make it to day 3 and then day 5. It's kind of just a guessing game at this point, so my RE didn't say anything about it. Because really, she doesn't know. As much as I hope this round works, if it doesn't I hope we at least have an idea of what the problem is.
twinkie0612 - I'll have to keep your situation in mind. That's interesting.

[LavishPeach]

My RE never actually said the words "unexplained infertility." But that's what we are, since all tests came back normal. I can't remember exactly what he said, but it was something like he found no reasons why we shouldn't have gotten KU yet.

His plan was to start on oral meds and TI after I had an MRI to confirm the shape of my ute, but we had plans to leave for Europe so we didn't follow through. Maybe once we get back.

Sorry I'm of absolutely no help at all.

[rachaeleigh]

Ahhh....the ol' unexplained diagnosis. We are also unexplained, according to 5 different REs. I have gotten pregnant 4 times (all losses), but stopped getting pregnant after the last loss (2 years ago)
None of the REs have said anything different then your dr. After 5 unsuccessful IUIs, we're now prepping for IVF

[Tiger]

We are borderline MFI/Unexplained. I don't really have any answers for you, other than that we got the UI diagnosis from DH's urologist. His numbers aren't great but, in his words 'that isn't why you aren't getting pregnant.' Yay <sarcasm>

[ronniesgirl]

I used to be unexplained, but DOR is the current dx. I super highly recommend ISWTE. Regardless of what's going on, you'll want your eggs to be as healthy as possible before moving forward with treatment.

I remember before reading the UI is usually early DOR, silent endo, and something else I can't remember.

[tiffmich08]

uugghhh.....the phrase "Unexplained Infertility" makes me cringe!! WHY? WHY is it unexplained? Find SOMETHING, ANYTHING, that is preventing me from getting pregnant, please! Sorry lady, no advice, just bitchin' right there with you. (((HUGS)))

[moto611]

We're unexplained too. My RE was initially very optimistic about our chances with IUIs, but here we are 6 BFNs later. I always responded to the medicines, my lining was always great (maybe too great - is it possible for the lining to be too thick?) and my husband's numbers were always enough. But no baby. Now my RE is recommending IVF - he specifically said he did not anticipate us needing either ICSI or assisted hatching. So apparently he doesn't feel unexplained = hard shell on the egg. I read ISWTE and am driving myself nuts trying to follow all the advice. (How do you realistically stay away from plastic??)

[goldenlove3]

We are also unexplained. My RE didn't have much to say about it. She just gave us the standard treatment plan which was clomid/IUI, injectibles/IUI, then IVF. It sucks that you can't know what is going on up front. I figured most of the time it's during an IVF cycle that you find out about egg issues, etc.

[ronniesgirl]

moto611 Are you at SG? My SG REs were against ICSI, but both of my second opinion docs were shocked that ICSI wasn't used by default at SG. Sometimes during IVF fertilization issues Re uncovered. I'd pushed for at least 50/50 on the ICSI vs natural fert.

[moto611]

ronniesgirl - yes, at SG. So your second opinion doctors thought ICSI should be default because of the unexplained diagnosis? Or just in general?

[fightersince83]

My Dr's office continues to mark unexplained IF on my superbills, which I find extremely annoying since we've ID'd MFI (morph) and issues with me as well. He keeps saying it's nothing that should be insurmountable...yet here we are... We are doing some additional testing to see if there is a reason for our failed FET. So far nothing has come up but we are waiting on some more results

[luchich]

My RE diagnosed us with unexplained infertility. All she told us was our plan 3 iui's with clomid 3 with injectables then onto ivf. My insurance requires 6 iui's.

[sewfie2]

We were unexplained- I had very mild endo, but not enough to affect my fertility, according to our RE. We just did IVF and found that the issue seemed to be that the sperm couldn't penetrate the eggs. So even though his numbers are great all-around, they couldn't finish the job.

[ronniesgirl]

moto611 Both RMANJ and SIRM were adamant that everyone with every dx gets ICSI. I actually think the RE at SIRM thought I was incorrect when I said they didn't ICSI. He said that the studies were quite clear.

Having said that, I didn't have any problems with fertilization with my one and only ER at SG. However, I would really push for at least 50/50.

[mrsrodgersaz]

We are unexplained. MH has slightly low morphology but my RE said it is right on the edge of normal/not normal so he doesn't think that's the issue. I responded well during all of my IUIs, lining was great (except for one cycle on Clomid which made RE switch to a Femara/Follistim combo), MH's numbers were always great - RE has no other explanation for why things aren't working. Like PPs mentioned, my RE did say that IVF often times reveals egg quality, fertilization, or embryo problems that can't be identified during IUI cycles. he also recommended ICSI because he said that he would hate to see us get great results during ER, and then have none of them fertilize because of an issue that wasn't found previously. I figure we're already going to be paying a lot of money, we might as well do ICSI too so that we have a little better chance of fertilization. 

[juneroses]

Can I post here? I was diagnosed with PCOS at the beginning, prior to testing, because my cycles varied between 28 & 35 days. after testing, I have normal blood levels, no string of pearls, a normal HSG, respond well with multiple eggs, and have a great lining. I read ISWTE, too, moto611, and also drove myself crazy to the point that I quit except for CoQ10 & trying to avoid plastic glasses. The RE told me (again) today that we just couldn't see what was wrong...3 years without any positives is the only evidence we have of something we can't test for yet. It's just really frustrating to not know what to "work on"...or how.

[tikoberry99]

moto611 I read ISWTE, but was already practicing most of the advise she recommended including getting rid of plastic. I threw out all of my plastic containers and only use glass. I also threw out all my plastic cups, plates, etc and replaced everything with glass. I'm a glass freak lol. It cost money to buy all new stuff, but I feel really good that I'm trying my hardest to not use plastic in my daily life. I also avoid all canned foods (forced me to give up canned tomatoes and make my tomato sauce from scratch, which tastes so much better!) to avoid BPA.

[kaliRN]

We are Unexplained Infertility. All testing has been normal. We however have had two pregnancies in 18 months but both were losses around the 8 week mark. My doc thinks it's egg quality. He said he thinks that they are good enough to ovulate but that they aren't great and there isn't the hormone support afterwards. His suggestion is that we do up to 4 rounds of clomid + ovidrel trigger. He didn't think we needed IUI since MHs sperm is fine and we have gotten pregnant. He said since we've proved that sperm can meet egg we don't need it but he thinks that clomid will increase my egg quality and hormone support after ovulation. He suggested clomid vs femara due to new research that isn't even published yet. So I guess we will see how things go!

[moto611]

juneroses and tikoberry99 - ISWTE is both convincing and infuriating at the same time. I got rid of my plastic drinking glasses and I bought a glass water bottle. The part I'm having a hard time with is my Keurig. I'm sure the plastic brewer and plastic little cups are a huge no-no, but I just love it. I also can't figure out what to use instead of saran wrap in the kitchen. tikoberry99 - I found out that Trader Joe's doesn't use BPA in their canned tomatoes. Maybe they replace it with something equally bad though, who knows. I did go through all my make-up and get rid of all parabens/phtalates. Parabens especially were in EVERYTHING including all my lip balms and lotions I don't know if any of this will make any difference at all... I certainly have plenty of friends who got KU'ed despite their tupperware. But I want to feel like I'm doing everything I can.