MFI advice on next steps

greenhillgirl

Hi Everyone,

New poster here-thank you for reading and responding if you have any advice or experience with any of what we are going through.

Basics:
Me- 31 with early endo but tested for infertility and so far good to get pregnant, normal weight
DH - 45 (cradle robber, yes ) and has a BMI of 44- he is clinically obese. Manual labor job,walks about 10,000 steps a day so good for him phsyically, no health issues related to his weight yet. He has not had any complications from his weight yet.  He smokes about 5 cigarettes a week.  He has a lower drive and we have difficult schedules, so we haven't tried as regularly as we should over this time. Recently he has been having some performance anxiety because of the pressure we both feel and that has made it even harder.

6 months ago he had an SA and had 2 million (so quite low) and very poor motility and morphology. He was then sent to get a testicular ultrasound and he has small ones- testicular atrophy and hypogonadism with no varicocele. But when he got hormone and genetic tests done we found out his testosterone levels are normal. The only indicator was the one attached to a protein that our doctor said means his body is trying to fix his issues and that any meds he would give him wouldn't help more than what his body is doing.

Our doctor is highly reputable specialist at a top medical center - MAJOR downside he is too busy and impossible to reach. It took 6 months to get this info. Then he referred us to IVF which I was willing to consider but then I found out my insurance doesn't cover it and that I would be able to obtain coverage in January but not now.

This brought be back to my initial thoughts and questions. Why has the doctor not brought up his weight as a factor? Everything I read says it could have a huge impact. Why has the doctor not brought up his quitting smoking as a way to increase count? Why would the doctor refer us to IVF when he has only ever had one single SA? When he had the SA we hadn't done it for over a month so could that be making it look even worse? Why didn't this specialist ever ask about his drive?

We have an appointment next week with a different fertility center and I'm hoping they will refer us to either the MFI specialist and/or the nutritionist that works there. I have spoken to DH about his weight being a factor and he agrees he needs to quit smoking and lose about 50-75 pounds before we try IVF. But as humans we all know the pressure that puts on him and how its easier said than done.

How do you all maintain your relationship with all this going on? Thanks for any thoughts anyone would share.  I feel so alone!

funkykey

Hi @greenhillgirl - I'm not an MFI specialist, but from what I've gathered, all the factors you've listed - quitting smoking, losing weight, etc - even if your DH does all of them and doubles his count, you're still looking at about 4 million. At a certain point, when a count is below a certain number, really IVF with ICSI is your best bet. (Besides which, 5 cigarettes a week is not a lot.)

You could find another clinic and go in for another SA, if that sets your mind at ease. Maybe he will have a different result, but with that initial count of 2 million, you're unlikely to see a result of like the 80 or 100 mil you want.

If it makes you feel any better, my DH has really good SA results, but even with his great result, after his first SA, I suspected it was a fluke. I was like: "I'm so healthy and so clean living, and we still can't get pregnant, but my DH smokes so maybe it's something with him - that first SA had to be wrong!" We've since had 2 more SAs, with our IUIs, and they've been as strong, if not stronger, than his first. So it works both ways... My point is just that, in my experience, the fluke SA results are less common than you'd think/hope.

I imagine this diagnosis has probably been pretty hard on your husband. If he's anything like my H, he might be sensitive about his weight and that he smokes. Losing weight is really hard, particularly when you're under stress (ie. going through IF treatments, finding the money to pay for them). The self-loathing that can come from a MFI diagnosis would not make that any easier - in fact, it might have just made him feel worse about himself. I know this advice is so common as to be cliched, but really try to dig deep and be as supportive, patient, and loving as you can. A sperm count is in no way an indicator of how good a father someone will be!

For sure, maintaining a relationship through IF is difficult. It's really hard not to blame each other, and to get on the same page, and to be supportive. Each couple will have their own struggles, too - for us, I was ready to start treatment before my H, and while we're on the same page now, we had a couple of barn-stormers to get there - just about how hard we wanted to try to have a baby, how much we were willing to spend, how many doctors we were willing to see. But if you can get through all of that, as cheesy as it sounds, these challenges are an opportunity to demonstrate to your partner the quality of your love for them. My H has been so patient and supportive of me, it makes me embarrassed when I have not been as patient and supportive of him! 

Good luck to you! Trying to have a baby is hard - it's really, really hard - it's your whole future, everything you are hoping for your life - it is understandable to be frustrated and sad. Be patient with yourself too!

mtele

Sorry to hear about your struggles! My husband and I are also dealing with MFI. His initial count only had 8 motile sperm! He has made some lifestyle modifications and been on prescription medications and his count has come up to about 3 million. He is also a bit overweight (BMI about 33- so technically obese) and I have been trying to get him to loose weight for a while now. I think sometimes I help motivate him, but when I press to hard he gets hurt and frustrated. It's such a tricky balance! He saw a urologist who prescribed the medications, but also didn't say anything about his weight, which I think would have helped.

My RE said that basically with any count less than about 10 million IVF is the best option. IUI has a very low success rate with counts below 9 million, but some people get lucky! We just did a round of IVF and I responded nicely, with 16 eggs retrieved but only 4 made it to blastocyst stage, which my RE said is a lower percentage than what she would expect. We are waiting on PGS (genetic) testing on the embryos to discuss the next step with our RE. I am suspecting they may tell us that the low blastulation rate is due to sperm quality.

I would suggest that you and DH go to see a reproductive urologist. Sperm takes about 3 months to mature, so any effects of treatment that they suggest would take a while to take place. If you are willing to wait, it might be best to wait until January when you could have insurance coverage and allow any treatments and lifestyle modifications to take place. I'm sure you already feel like this process has taken longer than you hoped and that waiting even longer can be so painful, but it can be incredibly expensive if you have to pay out of pocket. If you think that you will be able to get insurance to cover it in January, it might be worth the wait.

Isthisthereallife

greenhillgirl Welcome. I'm sorry you find yourself here but know that you're surrounded with a lot of support!! 

I have to agree with just about everything @funkykey said. Even if your DH did everything right, losing weight, quitting smoking, etc. I'm not sure that it would get his SA where it needs to be to have TI or IUI be successful.

Our DX was MFI also and that was hard for my DH. Not only for his own pride, but he saw the hurt that IF was causing me - which in turn hurt him even more. We went through 3 failed IUI's just to switch clinics and find out that our likelihood of success with IUI was only 1%. If I could go back in time, I would have skipped the months worth of waiting for clomid to work (even thought it did raise his counts from 900 to 37 million over 8 months), and the 3 failed cycles of IUI and just gone straight to IVF.

It was difficult for us to come to terms with needing IVF. I thought we needed to give every available option a try, and in that, we spent too much money and too many emotions just to end up with IVF anyways. 

TW:
Our first round of IVF was a success. We're currently almost 17 weeks and we have 4 additional eggs in the freezer for when we'd like more kids. We did end up doing ICSI because we knew it gave us the best chance. 

Wishing you the best of luck on this journey! 

greenhillgirl

@funkykey Thank you so much for your thoughtful reply--it is really hard and just having someone else acknowledge that helps.  

I understand what you're saying about the very low sperm counts and the possible small increases that lifestyle changes could make. I especially appreciate the sensitivity around weight and pressure to make lifestyle changes. That is why I have generally avoided asking him to make any changes. We all have habits that are less than perfect and generally that doesn't keep people from having babies. 

We thought my insurance covered IVF this whole time until I found out that I am on an unusual small group plan that doesn't include any advanced infertility treatments, which includes IUI and IVF. I can enroll in his as my secondary in November 2017 and have it take effect in Jan 2018 so after over a year and half we could wait 10 more months and have IVF covered. I guess big picture that is very fortunate and I am trying to be grateful for that. 

I actually don't think his SA was a fluke but some of our confusion probably stems from a doctor that is very rushed and not taking time to explain things. He could say "You only had one SA but because of xyz I believe it is reliable so I don't want to waste time and want to move forward." Perhaps because the doctor had so much experience with these struggles he has seen a lot of people try to make lifestyle changes and still not be successful and feels like the most likely thing to work is IVF. I've also noticed in New York City that since IVF is so common and lots of insurance plans here cover it they realize lots of people just want the green light to go for it. That is appreciated! 

I hope we can view this appointment next week as a second opinion and maybe it will give me some peace of mind in waiting for our IVF in January. I do feel like our struggles have brought us closer together. He has been so supportive of my mood and hormone struggles getting off the pill and endo backpain and I hope to be just as supportive with him. I take your words to hard and love that being supportive and loving is something I can focus on during this difficult time!

greenhillgirl

Thank you @Isthisthereallife ! It's so nice to hear a story that has a positive update. Congratulations! I appreciate your perspective on saving the heartache and frustration of a long process if the best bet is IVF. That is definitely the doctor's advice. I think it will help my state of mind to get a second opinion next Thursday at our appointment. Then maybe we will just end up in a waiting/holding pattern until I can add his insurance in January that will cover IVF.

I guess this forum is a good way to keep talking about and processing everything that is happening without making DH feel worse than he already does by obsessing! 

hibiscus118

@greenhillgirl welcome!   We have a MFI diagnosis with seemingly nothing wrong with me, so the tests say.  My husband had varicoceles and surgery to repair it, plus wacky hormone levels all around. Before surgery his count was basically 0, they found a few mobile sperm but that was about it.   4 months After surgery and HCG injections to up testerosterone levels, he got up to 4 million plus better all around morph and motility.   We were thrilled because that meant we didn't have to worry about there being nothing and needing to extract it with a needle (that's what he was most worried about, not even the surgery!). We still had a one way ticket to IVF with ICSI though.  

He also is a tad overweight, bmi 34-35 or so.  Our reproductive urologist said she didn't think losing weight would effect him so much, so we never really went that route for infertility. I'm not reallly sure if the lifestyle changes would effect it all that much, it would probably be good to speak with a reproductive urologist, especially I feel you have until January before you can get coverage.  My RE recommended ours. 

FWIW, I have no regrets taking the time to explore our options and upping counts a little.  Just getting it to where it is now I feel like got us more embryos of great quality when we did do IVF.  

wifeinraleigh28

Hey there @greenhillgirl! I'm so sorry that you're going through this! Our dx is also MFI (low count and also low T levels). Counts were less than 10 million motile (or post wash). My DH has given so many sperm samples by this point we often laugh about it. The instructions were always very clear... that he was to have 2 days of abstinence prior to the collection for the SA in order to get the best results. I'm surprised your RE didn't have similar instructions! He also did about 3 SAs prior to us having any treatments and the RE also referred him to a urologist that specializes in male infertility. The urologist prescribed him clomid to boost his counts and it took about 6 months for us to really see improvement. During the time we were waiting for the clomid to (hopefully) do its magic, we did a few IUIs, none of which were successful. Meanwhile DH continued to get SAs and blood work to check his T levels and everything was improving, just very slowly.

Even though clomid has helped, we still ended up doing IVF as we were still not getting pregnant either on our own or with the help of the IUIs. **TW** I will be 29 weeks pregnant tomorrow from our first round of IVF + FET so it was definitely worth it!

All of this can be so hard on your relationship, but ultimately we both just really wanted to start our family more than anything, and that's what we kept focusing on. We knew we could handle anything the doctors threw at us because of that. We were pretty much willing to do whatever it took (and that we could afford, of course). And now we are both just so thankful that we had the opportunity to do IVF and that our baby girl will be here soon.

Best of luck to you and I hope you are able to write your own success story soon!

greenhillgirl

Thank you @hibiscus118 and @wifeinraleigh28 it's so helpful to hear from others who are going through the same thing. I looked at his SA again last night and it's actually 1.56 million with very very low motility. It makes sense that it will probably come to IVF for us and I am willing to wait of course, as we all have been waiting and trying things. But it's helpful to hear the instructions about the test. He didn't get specific instructions but I also wasn't there and he isn't the best at dealing with this stuff. I would like to get at least one more SA with a sample that's not a month old and confirm it is still quite low. Thanks for sharing!

greenhillgirl

@funkykey @mtele @Isthisthereallife @hibiscus118 @wifeinraleigh28

Hi Everyone,

Thanks for your earlier helpful & thoughtful comments. We saw the RE today at a nice center that does everything as a follow up to the Urologist & Infertility specialist doctor we had seen and my seeing my OBGYN. I liked this doctor and the amount of time he took to sit with us and speak and explain things as opposed to the Urologist who was always hard to get a hold of and rushed. He reiterated IVF as our only true option but also wants my H to meet with the male specialist there and get a second SA done to make sure its along the same lines. I am thinking it probably will be. He also did an ultrasound and said my ovaries look good and I have 6-8 follicles on each which I think is supposed to be good? 

I'm still coming to terms with accepting this and having a hard time concentrating, sleeping, doing anything except sleeping, and getting out of bed in the morning. I hope it gets easier. My husband has been pretty withdrawn about the whole thing- completely understandable- and just says he needs to think. 

We're both really torn over starting IVF sooner rather than waiting for 75% insurance coverage in January 2018 and trying it then. My fear would be waiting, not having success, and wishing we had proceeded on adoption home training or another option earlier.

Thanks for reading and I'm open to any advice on coping or making decisions. 

wifeinraleigh28

@greenhillgirl I'm really sorry you find yourself in this dilemma. It's definitely a tough pill to swallow. I think it actually helped for us that we were told we could try IUI first, since IUIs are more like an infertility stepping stone. In hindsight, I almost wish we hadn't wasted time on the IUIs since success rates are so low, especially with an MFI diagnosis. But starting with IUIs did help transition us to the inevitable need to go the IVF route. After the disappointment of a few failed IUIs we were both so ready to hop on the IVF train so that we could finally be up against some much higher success rates! If you and your husband choose to start the IVF process, you could see success quite quickly, since you have good test results and IVF completely bypasses any male factor issues!

There's no right or wrong way to go about it, you just have to decide what you feel most comfortable with. My husband definitely struggled with the diagnosis in the beginning too, and I found that just completely taking a step back and allowing him to come to terms with it on his own time was the best approach. I never pushed for him to do anything he didn't feel comfortable with, and he ultimately decided to move forward with treatments because he really wanted to start our family too. The two of you are a team and it's important to remember that when things get rough here, and this whole infertility business is more than rough. Hang in there, and please feel free to PM me if you have any questions or just need to talk to someone!

funkykey

@greenhillgirl - 

I can enroll in his as my secondary in November 2017 and have it take effect in Jan 2018 so after over a year and half we could wait 10 more months and have IVF covered. I guess big picture that is very fortunate and I am trying to be grateful for that. 

That is devastating -that is a long wait. I mean, after the second SA and some more info, you may want to weigh your options again, but in the meantime, I wonder if, since your fertility issue has been diagnosed as MFI, you may be able to get it covered under your husband's plan sooner, since he is already enrolled?

I think it's definitely worth reaching out to his HR and finding out, or even the insurance provider. Apparently there are often concierges who do this kind of work. Also, you may be able to write a letter and appeal. It really doesn't make sense, if he's already covered and has an issue, why should you have to wait?

Good luck! Don't lose hope!

[Deleted User]

I have been lurking this thread, not sure what to say.  It's still hard for me to talk publicly about our dx.  We have a second apt with the RU to go over test results on Monday.  When is your apt, OP?

greenhillgirl

Thanks everyone and thanks @BusinessWife. I will take all the advice I've been given to heart and ask about the insurance.  I totally understand not being ready to talk about it yet. Thanks for the support. I realized getting our copy of his results that his count is .6 million not 1.56 because of how the standard measurement is done so it's even worse than I thought. Not that it makes that much of a difference at these levels. 

We found out the male factor specialist is the only one who doesn't take his insurance of that center so now we don't know what to do. I guess we need to find a different urologist for him to try or to go back to the first one and ask if there are any other options to try. He's so overwhelmed by this stuff so I'll prolly end up finding him one. 

One thing were both struggling with is the finances. I'm reading at my age of 31 success rates for IVF are 35-45% per cycle with 6 cycles averaging 65% live births. Even if we wait until January we will pay 25% of $13,000-$16,000 per cycle plus copays and ICSI and anything not covered. So even being optimistic you're looking at $15,000 to get pregnant. I totally accept people's willingness to go that route but we're really practical people and we just bought an apartment last year and will have high daycare costs. I'm the type of person who if I want something that I can't afford I just get over it. We had a BBQ wedding with 35 people and a lovely dress from Target and spent the money on our jewelry and the apartment. I don't know that we want to pay that kind of money to start a family that will only get more expensive. After reading so much on this forum geared towards IVF I feel like there's something wrong with me for not wanting that. I suggested adoption or donor sperm and my husband was interested in donor sperm because he has always really wanted to experience pregnancy with me. But his urologist, our RE, and my OBGYN all jumped to IVF and didn't mention any other choices like this. I feel like a freak for considering donor sperm or foster to adopt or alternatives. 

[Deleted User]

@greenhillgirl Hahahahaha. Ha. No, you're not weird. I thought it was weird how the first ru we saw said, "oh we have all this info on your different options, including adoption!  We'll give you all the literature," etc. And when we left, after hearing more than I cared to know about donor sperm and how to choose a donor, different types of donor situations, having him completely shut down my questions about looking for a blockage or repairing a tube, and us finally leaving with - surprise surprise - ZERO ADOPTION INFORMATION.  That was really frustrating.

We are OOP bc we have Christian Health Ministries.  They are great for maternity and any hospitalizations are 100% sharable, but we are OOP for prescriptions and anything fertility related. I mean I'm not totally sure, but I know iui, ivf and vv are not covered (but I don't know if they would cover a tube repair that was not originally due to an elective vasectomy).

Anywho, ya everyone wants to push you to ivf like it's the most obvious thing, but not even that is a guarantee.  And as hard a decision as that must be for any couple, I do think some are more happy/eager to go for it and others have more reservations.  If we can have promising results of counts returning through hrt? VV type surgery? Clomid? Anything like that that might give us a snowball's chance of spontaneous pregnancy, we would take it. If biopsy/tese with ivf/icsi really is our only option, we at least want to explore all the orher avenues so we know we are making the right decision.

It's a lot to take in with all sorts of ramifications. But there is a 3rd party board where you might find out more about donor iui, and an adoption board, though I'm not certain how busy that is...

hibiscus118

@greenhillgirl not weird at all!  It's good to know options.  We've had a long time to sit on our diagnosis (over a year) and are *tw* 7 weeks pregnant now.  The first few months of all the unknowns were the hardest.  At first we thought we had to go straight to donor sperm, and were ecstatic to hear IVF with ICSI was an option for us!  Also, I will add that it was an "easier" pill to swallow for us because my insurance covered 3 IVF/FET cycles at 90%.  

Its good to think about all your options and ultimately, do what is best for you guys emotionally and financially.   I read really good advice here awhile back, you need to advocate for yourselves through the entire process.  Ask your doctor about other options, and if they aren't willing to discuss get a second opinion.  Good luck! 

[Deleted User]

Seconding advocating for yourself and a treatment plan you feel good about.  No one else is going to do it for you, really!  I'm so glad we had a second opinion lined up, ready to go after seeming the first one, and if anything, in our case I feel like we wasted a lot of time waiting around for availability with him (for reasons i wont get into) when I had the chance to see the guy we're seeing again Monday much sooner, but we didn't bc we wanted to see the other guy first.  Well it takes what it takes but if you find the right doctor <i>for you </i>eventually, that's what matters.  ;)

HottLemonade2886

Definitely do what you and your husband is comfortable with. My husband's first urologist had a crazy wait time and we wasted a year getting no where with him. Ended up going with one of the best in the business but since he was semi retired and didn't take insurance we have to pay for the aspirations OOP so yes even with insurance you will still have costs. My insurance covers IVF but with PGS, freezing and other lab costs and aspirations we are already over $8k and need to do another cycle and hope we have better luck. I totally get where you are coming from in questioning kids. I have said numerous times to my husband that it would totally be easier if we could just be one of the oops baby couples because you have to go through so much with IF and will easily question if it's worth it. Every couple has their own journey and there really is no one way to make a baby. My husband and I don't see donor sperm as an option we would take but if you and your husband think that's the best path for you then definitely do it. Don't let anyone decide what is best for you.

greenhillgirl

Thanks everyone! @BusinessWife @hibiscus118 @HottLemonade2886
 I really appreciate the acceptance of different options in this community!  For next steps we are working on getting him a second SA.  He said he's more comfortable sticking with the same urologist who I know is competent. I think we need to push him to spend more time with us asking questions and asking for details about alternatives. When we last spoke to him we were still absorbing everything and thought my insurance covered IVF so now we need to go back to him. Like everyone said, speak up for ourselves! I'm also going to move forward with the test you get on your uterus on the 6th or 7th day of your cycle that determines your IVF protocol so that I will have some more info. 

The other thing I am working on is not pressuring my husband to make a decision before he is ready. I really don't want to pressure adoption or donor sperm or waiting for IVF in January because I know I can love any baby that ends up with us. Everyone is different and it's just something I know about myself. He is the one dealing with the MFI and who has to decide what he can live with and what he can't. If he would rather have neither genetics and adopt I could understand that or if we would rather wait to try IVF I could also understand that. The one thing I did ask to take off the table is paying out of pocket for IVF sooner rather than waiting. I think I would resent it if we did that. But for now, I need to give him time to process. He told me he wanted kids since the day we started dating and thought in his early 40's being single he couldn't have them. He has always talked about me being pregnant and having a child and I know he's really hurting. I'm proud I didn't bring it up all weekend and gave him space on it!!

Has anyone else read Unsung Lullabies: Understanding & Coping with Infertility? I downloaded this book on my family's Nook account we share (my parents and my sister) after telling them a little about our struggle. Now they all know I'm struggling haha!  Anyway, its really helpful so far about why this is such a grieving process for me and why it's really felt like a trauma and harder than people might expect. It is hard to read, but if anyone is struggling it really is helping me feel validated about what I'm going through.

I have therapy tonight- yay Happy my insurance covers that.  Hope people are having a good week!

funkykey

@greenhillgirl - you said:
After reading so much on this forum geared towards IVF I feel like there's something wrong with me for not wanting that. I suggested adoption or donor sperm and my husband was interested in donor sperm because he has always really wanted to experience pregnancy with me. But his urologist, our RE, and my OBGYN all jumped to IVF and didn't mention any other choices like this. I feel like a freak for considering donor sperm or foster to adopt or alternatives. 

I totally, totally do not feel like you are a freak or think that there is anything wrong with you! Hahaha! In fact, I think you seem very practical - genetics is certainly not everything, and if you want a baby, you want a baby. It also depends on what your husband wants, obviously. I say this because for my husband and I, these things are complicated. I'm more open to adoption than my H is... ergo, we are exhausting our IF treatment options before considering donor eggs or adoption. (And truthfully, now that I'm in the IF world, I'm really, really hoping we don't have to do either of those things - I'd really like for one of our treatments to work - obviously! But who knows how I will feel in a few months, or after this is all done.)

I think it's really cool that you are giving your husband space and are so open to all these different avenues.

This board is really geared towards IF, but I think there's a third-party board and also an adoption board - you might find some helpful thoughts/perspectives there too.