2nd opinion, back to drawing board, need advice. [long]

farmerlynda · November 2011

MH and I went to a pretty famous male fertility specialist in "the big city" yesterday (I'll call him Dr. T). We decided to do this because none of the people we've seen so far are actually male fertility specialists -- and just in case MH's testicular failure is symptomatic of a greater health problem.

Dr. T was intrigued by MH's crazy SA history, strange hormonal imbalances, and mysterious MFI. I guess it's both good and bad to be the weird, freak case: Dr. T really wants to get to the bottom of it, plans to consult with other docs, and has asked us to do more testing. (One of which is a testicular ultrasound in case MH has testicular cancer... which is scary. Dr. T didn't feel any lumps or anything but said it could be one explanation for MH's condition.)

Now for the bad news. (Not like any of that was really good news.)

We were all settled on doing IVF locally in December/January. After talking with Dr. T, we learned some things that confirmed our initial dislike of the local RE. He also thinks that even though MH's count is very low, his motility is strong, so we should try IUI by combining frozen samples and fresh samples. (This way we wouldn't use most of the frozen samples, just a couple of vials per IUI.) And that IUI doesn't need to have 5 million post-wash to have a shot at working -- he would try with as few as 3 million. Dr. T says that he has seen some pretty amazing things happen when the female of the couple is still fairly young, and that not all MFI cases should be ushered straight to IVF/ICSI.... his parting words were "who knows, maybe it will even happen at home."

Anyway, the male fertility doc personally recommended another RE in the city, and I scheduled an introductory visit with her for next Monday. (This, by the way, means a 2 hour drive each way per appointment.)

It also means we're starting all over again. And I don't know how I feel about that.

Actually, I take that back. I feel shiitty. It's a huge let down when I've been gearing up for IVF... but we also just felt so much more comfortable with Dr. T. He was really straightforward and knowledgeable, but also sensitive. He pointed out that REs everywhere are hurting for cash right now, and that I'm an ideal case for IVF, so everybody would want to have me... and said I should stand up for myself to get things done the way I want them.

I don't know if you all remember my first visit with the local RE... she was basically a rhinoceros in a china shop, no bedside manner whatsoever. I felt like crying or punching her for the first half hour. I didn't like several things about their procedures including the fact that they flat out refuse to tell you your first beta until you've had the second drawn. I don't need to be "protected" from my own information, thankyouverymuch. I know what the numbers mean.

Phew, that was long. I guess my question is -- WWYD? Would you go for the second RE opinion, even though it means a crazy long drive for appointments? If you have any words of wisdom, I'd appreciate it.

Sloane99 · November 2011

Hi, I hope it's okay that I'm posting, I saw PIAFW in your siggy.

I'm sorry you're going through this, but I can really relate, we are also MFI and felt dismissed by our original RE. We were young enough, she didn't see why we shouldn't do IUIs and at least try. Meanwhile, we had counts going up and down but never over 300,000 and that was a fluke day. The RE was rude, hurtful and showed no emotion when she gave us our diagnosis or concern over anything. It felt scary and unsure. The clinic messed up our charts a couple of times too and that's when we said we were done. As much as the process sucked, we knew deep down that it did not feel right at all.

We ended up doing our IVF cycles in the US (we live in Canada) and yes, there were parts of it that were a huge pain - travelling, medications, etc. Even though our first one failed, I never, ever felt like we were in the wrong place or that we weren't taken seriously as patients and even more importantly, people. The RE worked with us, with our concerns and let us guide some parts of the process while explaining his thoughts.

Please go where you feel comfortable and follow your instincts on this. I know the travel seems like a hinderance and it definitely is, but I would hate to know that this child was created during a time that I could never have looked fondly back on.

Rvnsgrl81 · November 2011

First of all I am so sorry you are having to deal with this on top of the IF struggles we all are experiencing. It does suck. I can't imagine gearing up for treatment one way and being so close to starting that treatment plan and then getting news that maybe something else should be tried first.

If I were you and felt that uncomfortable with your RE you are currently seeing than I would say at least go to the second RE and get their opinion on things. I know the drive will suck majorly, but at least you won't always be wondering what if. That is how I look at things, if there is a chance that I may say to myself down the line what if I had gotten a second opinion...then I say why not get one. It most certainly can't hurt (besides the fact you were all set to start IVF and may change your plans).

Sorry so long. I hope my thoughts help you a little. GL and please let us know what you decide to do!

farmerlynda · November 2011

Sloane99:
Hi, I hope it's okay that I'm posting, I saw PIAFW in your siggy.

I'm sorry you're going through this, but I can really relate, we are also MFI and felt dismissed by our original RE. We were young enough, she didn't see why we shouldn't do IUIs and at least try. Meanwhile, we had counts going up and down but never over 300,000 and that was a fluke day. The RE was rude, hurtful and showed no emotion when she gave us our diagnosis or concern over anything. It felt scary and unsure. The clinic messed up our charts a couple of times too and that's when we said we were done. As much as the process sucked, we knew deep down that it did not feel right at all.

We ended up doing our IVF cycles in the US (we live in Canada) and yes, there were parts of it that were a huge pain - travelling, medications, etc. Even though our first one failed, I never, ever felt like we were in the wrong place or that we weren't taken seriously as patients and even more importantly, people. The RE worked with us, with our concerns and let us guide some parts of the process while explaining his thoughts.

Please go where you feel comfortable and follow your instincts on this. I know the travel seems like a hinderance and it definitely is, but I would hate to know that this child was created during a time that I could never have looked fondly back on.

Thanks so much for the encouragement, I really appreciate it. I think you're right, trying a different doc is the right thing to do -- and it's hard because it sucks to drive a long way and start all over.

By the way, Dr. T said that he had several patients come to him and say that my local RE was horrible to their husbands... which is the exact experience I had. Also, that she thinks she knows everything and she doesn't -- which was true in our case. She strongly discouraged us from seeing any kind of male fertility specialist because MH's problem wasn't fixable. (What kind of doc tries to prevent you from getting a second opinion... and what if this is caused by some kind of cancer or something?)

farmerlynda · November 2011

Rvnsgrl81:
First of all I am so sorry you are having to deal with this on top of the IF struggles we all are experiencing. It does suck. I can't imagine gearing up for treatment one way and being so close to starting that treatment plan and then getting news that maybe something else should be tried first.

If I were you and felt that uncomfortable with your RE you are currently seeing than I would say at least go to the second RE and get their opinion on things. I know the drive will suck majorly, but at least you won't always be wondering what if. That is how I look at things, if there is a chance that I may say to myself down the line what if I had gotten a second opinion...then I say why not get one. It most certainly can't hurt (besides the fact you were all set to start IVF and may change your plans).

Sorry so long. I hope my thoughts help you a little. GL and please let us know what you decide to do!

Thanks for the encouragement Rvns, that's a really good way of looking at it

limpetfan · November 2011

I would go for the second opinion, if for no other reason than to see what she has to say. It's not set in stone that you HAVE to switch to the second RE. But, if you're more comfortable with whatever she has to say, I'd consider switching even though it's a long drive. I drive 2 hours to see my RE between going from home to the doctor and then to work, and it's worth it to me because I feel most comfortable with this doctor. It sucks, but it's worth it, KWIM?

I also wanted to say that I really hope there isn't some greater health problem with your DH. My husband is heading to a urologist next week for the same reason -- he's afraid his suddenly declining morphology might mean something else is wrong. It's really scary for them, and for you! I hope it all turns out OK.

hunterjumper102 · November 2011

Wow, you got a lot of information at that appointment. Honestly I would probably go see the other RE. It sounds like the one you are with has some questionable practices already and that you arnt exactly comfortable there. Even with the drive I would ask myself which is more important, time on the road or peace of mind that you are getting the best possible care from knowledgeable people. It can't hurt to have a introductory appointment and see what the new RE says. If you don't feel comfortable with the new one or they dont tell you something you like then you can just stay where you are. I hope thr Dr.T can help with your DH. Sometimes starting over isn't the worst thing. When we moved to VA from GA we essentially started over and it helped give us some perspective on the whole process and what we had done and where we were going with IF.

farmerlynda · November 2011

limpetfan:
I would go for the second opinion, if for no other reason than to see what she has to say. It's not set in stone that you HAVE to switch to the second RE. But, if you're more comfortable with whatever she has to say, I'd consider switching even though it's a long drive. I drive 2 hours to see my RE between going from home to the doctor and then to work, and it's worth it to me because I feel most comfortable with this doctor. It sucks, but it's worth it, KWIM?
I also wanted to say that I really hope there isn't some greater health problem with your DH. My husband is heading to a urologist next week for the same reason -- he's afraid his suddenly declining morphology might mean something else is wrong. It's really scary for them, and for you! I hope it all turns out OK.

I hope that both our boys are ok. You'll be in my thoughts! The fertility specialist we saw likes to say that a man's reproductive system is a "window into his health" (partly because it's linked to so many other important metabolic systems -- pituitary, thyroid -- and because the male body goes to great lengths to regulate and protect it)... so it's definitely good to get all of these things checked out.

Hopefully we'll both get to the bottom of this and it won't be anything too serious. And it's good to know that if I switch I won't be the only crazy RE commuter

MsGMChick · November 2011

Aww Lynda. IF and MFI suck but it sounds like that uro is awesome and has your best interest at heart. I would def go talk to the new re and see how you feel. 2 hours is a long drive but so much of this is hard and that drive is a small price for cycling with confidence. Good luck dear!

Rvnsgrl81 · November 2011

farmerlynda:
Rvnsgrl81:

First of all I am so sorry you are having to deal with this on top of the IF struggles we all are experiencing. It does suck. I can't imagine gearing up for treatment one way and being so close to starting that treatment plan and then getting news that maybe something else should be tried first.

If I were you and felt that uncomfortable with your RE you are currently seeing than I would say at least go to the second RE and get their opinion on things. I know the drive will suck majorly, but at least you won't always be wondering what if. That is how I look at things, if there is a chance that I may say to myself down the line what if I had gotten a second opinion...then I say why not get one. It most certainly can't hurt (besides the fact you were all set to start IVF and may change your plans).

Sorry so long. I hope my thoughts help you a little. GL and please let us know what you decide to do!

Thanks for the encouragement Rvns, that's a really good way of looking at it

No problem! I wish you the best of luck! And I hope your DH is ok and there isn't any major health issues!

Mitzi Bishi · November 2011

I think with IF that you're never losing out by getting more information, tests, opinions, or whatever else.

This is an expensive and time consuming process and unfortunately we are clients in some regard, so it's best to get as much knowledge as you can to make an informed decision, even if it means prolonging things even more. IF really is a test of patience!

I'd definitely get the second opinion, especially if this doctor you felt comfortable with recommended it. I know the driving won't be lots of fun, but maybe you can find some cool restaurants or detours along the way to make it more enjoyable.

It's exciting that you have some hope and that it might not entail IVF.

Don't forget the 80's slogan, "Knowledge is power!" I think this process is so difficult, because it's scary, emotional, and expensive, but if you can regain some confidence and feeling of control - even if that means picking the best fitting doctor - then that's one step in the right direction.

Good Luck! Looks like one talking fueled weekend at the Farmer house!

katieworek · November 2011

I honestly believe that unless you at least give it a shot, you'll always question whether you made the right choice in choosing the right doctor for your situation.

There is definitely something to be said for going to a doctor that you have a relationship with and trust with your medical treatment. If you have bad feelings about your current RE, it's definitely worth the 2 hr drive for the initial appointment.

After that, you can draw a more informed conclusion about which direction you should go in.

Good luck!

psych05 · November 2011

I think you answered your own question when you said that you feel much more comfortable with Dr. T. Any comfort (and knowledge!) we can find in this process is worth the effort.

keliser · November 2011

It sounds like you have gotten lots of great advice from the other ladies.. I agree with everything they say, and I loved hearing the success story

My vote is to see the new RE!!

Good Luck!!

sbrowns08 · November 2011

Lynda I'm on my phone so I apologize for the formatting and brevity. I love that you're seeing a specialist. I hope he can get to the bottom of things. As for Iuis...we did them with between 3-6 million. And all 7 times it didn't work. And I was 27. I wish a million times over that we went straight to ivf. Of course there's a chance it will work. But the time and stress we devoted just weren't worth it. I know you're in a tough position and I wish you all the best.

eponine7682 · November 2011

Hey there,

We actually have very similar circumstances, and going through something very similar (unknown reason for MFI, went to a Uro who is supposed to be the best in MFI, were told IVF only option but uro encouraged us to fo IUIs, etc) I am a little biased at this point since I was told all this a year ago and I am back to square 1. We were able to get MHs counts up enough where we could do IUIs. They ended up not working. I don't say that to persuade you to not try them, because honestly, I am happy we did do a couple of them so I can say I tried. I say it to make sure you remain realistic about it and keep in mind that you may end up having to do IVF. With that said, I would also totally get a 2nd opinion bu this other RE. Especially if you don't like your current one. I think trying out IUI might be a good thing, but know that IVF is always there. GL!

softbalangel · November 2011

I don't think getting a second opinion ever hurts. I also feel some RE's automatically go to IVF when MFI is at play. I think it's great that you have found a Uro that has taken an interest in your H. We are still trying to find a Uro that is a good fit. The first uro my H seen basically told him there was a very slim chance for us to have bio kids. The second Uro seemed much better, but then blew off my H's concerns about a bump/lump and just gave him some pills to help control his testicular pain.

You have to whats best for you and your H and what makes you the most comfortable. Good luck!

blueberries8 · November 2011

How frustrating...oh man. I think you should indeed consult with the RE in the city and also continue care with Dr. T. I wouldn't write off IVF with the local clinic this second, but I would at least see how the consult with the new RE goes. If you do try IUI (and I think that is a very reasonable approach) I just wouldn't waste too much time on it - since ovulation/egg issues aren't the problem, I think I wouldn't give it any more than 3 rounds.

I do think Dr. T. sounds trustworthy and like he is being very straight with you - it is entirely possible that your local clinic has their own agenda and are going to do everything they can to steer you straight to IVF w/ ICSI. I don't think ICSI is necessarily an unreasonable first stop, but it should be because that's what you guys really want to do and not because there is absolutely no other option.

Also, I wouldn't want to do IVF with an RE I was less than thrilled with. I did my IUIs and first 3 IVF transfers in a clinic I was pretty lukewarm about, in part because I felt like they were patronizing and didn't share information readily. Switching to a new RE and new clinic for this round made a world of difference in the experience. Good luck with whatever you guys decide - I am sure you will make the right decision for you!

farmerlynda · November 2011

sbrowns, eponine, softbalangel, and blueberries -- Thanks so much for the advice. It's incredibly helpful (and comforting) to hear from women in similar circumstances.

I've been thinking a lot of those things that you four said (for instance, that even though the Uro is optimistic, it's a crazy long shot when you only have a few million sperm)... But that maybe we could try one or two IUIs, depending on what the second RE thinks.

The other thing is, if this doesn't happen by April, we will have to wait another year because there's no way we can cycle during the busy season on the farm (especially if the office is 2 hours away). It would be really nice to at least try IVF this year.

Thanks again to everyone for the advice. I will keep that appointment next Tuesday and let you all know how it goes. I think I'll base my IUI/IVF decision on the input from the second doctor (if I like her)... because the Uro, although he works with REs, isn't an RE and is likely to remember the "odd" cases rather than the typical scenario. (The girl who got KU with a few hundred sperm IUI, for instance.)

Once again, I'm so grateful for the support of this board. DH got a kick out of it when I told him yesterday "Oh man, I'm gonna have to ask my online friends about this one." So glad I did.

pulga131 · November 2011

I would totally go for the 2nd opinion. I actually did myself go for a second opinion and now am going to be driving 2 hours each way for an RE! I think it's so important to feel comfortable with your dr. I feel comfort just reading what you wrote (and I do remember your previous visit). I know it's a let down to be on a plan and to be detoured, but just think of all of the positivity this dr gave you. From what I read, it's not over, and you shouldn't see a dr who makes you feel like it is! GL and I hope that is helpful

lynn0926 · November 2011

It doesnt hurt to get another opinion. You can still choose to stay with Dr. T after that appt. I wish you good luck in your decision!

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