advice from those with more experience/expertise (age, DOR)

[thedutchgirl]

Hi all, I know this board isn't super active any more, but I think people still read it, and you are (unfortunately) the experts. We got a lot of bad news last week, and I'm just wondering what those who have addressed infertility longer and are sadly more experienced would do in our shoes.

Background: with my current partner for nearly 3 years. Previously married and divorced and never tried (nor wanted) kids in that relationship. I'm 42, partner is 35. I've had Mirena IUDs for 12+ years and pulled my last one in early March 2020. Started ovulation strips right away, and I seem to ovulate monthly, but more on that shortly.

Did AMH last year in July 2019 and got .864. Not great, but not crazy for then 41.

Did CD3 in July 2020: FSH 16.8, Estradiol 56.

Referred to RE, and initial consult indicated 2-4% chance of IUI+ stims and 10% for IVF based on my numbers. RE wanted a new AMH and also SIS+ to check tubes. 

That was Friday morning, and I got the results that day. Tubes are blocked (no idea why) and my AMH (new lab) is now .44. Partner is 100% fine. Cut-off at this and most clinics in my area is .5 for AMH.

Since the first consult, RE has very much encouraged donor eggs, which have a 50-60% chance monthly. My uterus looked fine, so the issues are tubes, age, lack of eggs and likely quality.

Initially we said we didn't want to do donor eggs and would maybe just look at adoption after that, but I find myself feeling a bit different now, particularly since my partner is fine and we could still have his genes. 

RE did give me a referral for a tubal cannulation to try to clear the tubes but cautioned it could just make an ectopic more likely.

Tell me what you'd do in my shoes? I appreciate all thoughts. 

[Mushe]

Hi thedutchgirl!

@@@@ kids and loss mentioned @@@@@

I read your post and didn’t want to not reply, so hopefully a success story is welcome. I had a baby (at just shy of 40) after having an AMH of .24. Yikes. My IVF doctor didn’t even retest me, about a year after my first labs, because I was determined to try it anyway. I had 4 IUIs and 2 IVFs, but they all failed. I ended up conceiving naturally after giving up, which I don’t recommend!

If I had all that to do over again, and IVF wasn’t covered (we lucked out on some surprise coverage thanks to my husband’s employer), I probably would have jumped to an egg donor. We spent so much time chasing my few eggs, and it was an emotional roller coaster. I say that for me, because my AMH was way worse than yours! At .44, I definitely think you have a chance, if your clinic will let you cycle.

I hope you stick around! There are lots of us around here who can share what we tried. It’s nice to see you - I remember you from MM, right? I’m wishing you the best with your decision and path forward. 💓

[pinkpeony08]

I haven't had to do IUI or IVF, but I was shocked to find that my AMH was 0.25 when it was first tested 2 years ago given I had never had trouble conceiving, just staying pregnant. When it was retested a year later, it was almost exactly the same. I am now 38. My recurrently pregnancy less is more than likely unrelated to my AMH, though no one has clear answers on why.

I'm so sorry to hear your tubes are blocked. Are they able to tell you much about how much it increases your risk of ectopic? Even if they tell you in doubles the risk, it may mean going from a 2% to 4% risk. You may be able to conceive without IVF once your tubes are clear, correct? I don't know much about tube cannulation or if it matters who does it for outcomes, but it might be worth asking.

If it were me, I would do the tube cannulation and try naturally with close monitoring. It may save you the cost, stress and heartache of IVF.

Wishing you the best as you make your decisions about the next steps.

[thoseareradishes]

@@@

I was diagnosed with DOR after doing several IUIs. My FSH got up to around 14, and my AMH was around 0.8, I think? It's been awhile. I did 3 rounds of IVF and it was pretty obvious my egg quality was poor, due at least in part by some endometriosis. We decided to use donor eggs and have a little girl now, from our second transfer. I'd be happy to talk about donor eggs with you if you decide to go that route or have any questions.

[achi]

I'm sorry you find yourself in this place. It's a lot to think about.

I haven't had to go the IUI/IVF route, my issue was staying pregnant past 6 weeks. But if I was in your shoes, something I think you need to think carefully about is how strongly you want a child to be biologically related to you and how well you think you'd handle the IVF process. If biology is not a big deal for you, then I might go right to donor eggs since that seems to have the biggest chances of success.

If biology is a factor, I'm not sure what your financial situation is, or what your insurance is like, but if it's not too much of a stretch I'd probably try one cycle of IVF to start and have the embryos tested. That should give you a better idea of egg quality and whether or not future retrievals (if needed) are a viable option.

[thedutchgirl]

Thank you all. I really appreciate the thoughts and stories of what you all experienced as well. I'm so sorry for each of what you've had to deal with.

I didn't get a good sense of the risk of ectopic if we try to clear the tubes. I think I need to consult with the radiologist for that, as the RE didn't give me too much guidance--just that he couldn't get the air into them so they were likely blocked and maybe spasming too, so IVF was it. And then he called with the .44 later that afternoon and said donor eggs or bust. My partner had the same feeling that the RE's been pushing donor eggs since day 1, so I think we likely want a second opinion. And maybe to try clearing the tubes. It's so hard to know what to do.

Unfortunately nothing is covered by insurance other than diagnosis of infertility. Fortunately, we do have the resources to pay for quite a bit before we'd exhaust what we want to spend.

And Mushe--yes! MM occasionally, and also ML. I've been around for years although never super active as a poster.

[achi]

Aug 11, 2020 11:42:02 GMT -5 thedutchgirl said:

And then he called with the .44 later that afternoon and said donor eggs or bust. My partner had the same feeling that the RE's been pushing donor eggs since day 1, so I think we likely want a second opinion. 

Based on this I'd definitely be looking for a second opinion. I feel like it's pretty uncommon to jump straight to donor eggs so this seems a bit weird. 

[thedutchgirl]

Aug 11, 2020 13:06:11 GMT -5 achi said:

Aug 11, 2020 11:42:02 GMT -5 thedutchgirl said:

And then he called with the .44 later that afternoon and said donor eggs or bust. My partner had the same feeling that the RE's been pushing donor eggs since day 1, so I think we likely want a second opinion. 

Based on this I'd definitely be looking for a second opinion. I feel like it's pretty uncommon to jump straight to donor eggs so this seems a bit weird. 

Thank you! Yes, even in our initial consult, it was "here are the percentages based on your numbers for IUI and IVF, but if you did donor eggs, your chance goes up to 50-60%, so that's something you should seriously consider right away." We told him we weren't interested (at that time we weren't), and yet it's come up in every single interaction since. It is like "here's some bad news, but donor eggs."

[achi]

Aug 11, 2020 17:00:55 GMT -5 thedutchgirl said:

Aug 11, 2020 13:06:11 GMT -5 achi said:

Based on this I'd definitely be looking for a second opinion. I feel like it's pretty uncommon to jump straight to donor eggs so this seems a bit weird. 

Thank you! Yes, even in our initial consult, it was "here are the percentages based on your numbers for IUI and IVF, but if you did donor eggs, your chance goes up to 50-60%, so that's something you should seriously consider right away." We told him we weren't interested (at that time we weren't), and yet it's come up in every single interaction since. It is like "here's some bad news, but donor eggs."

That would bother me too. Definitely find someone you’re more comfortable with that supports your goals without constantly pushing other options on you.

[claudiakishi]

I don’t have advice but wanted to share support. I’m in kind of a similar boat. I’m 41 and have had CD3 testing and an SHG. We started trying about two cycles ago after I had my IUD removed. My doctor said everything looks okay for my age and encouraged us to try on our own before possibly doing a medicated IUI in the fall. I have read all kinds of conflicting information about that vs IVF for someone my age with my tests results. IVF is not in the cards for us. Anyway, if you ever want to chat with someone going through something similar PM me!

[doggielover]

What about considering to have a laprascopy to remove the tubes and then do IVF with your own eggs? Some clinics (where I'm at for example) don't have an AMH limit. IVF is going to by-pass the tubes. Personally I would avoid IUI. We did 3 rounds of IUI and all of them failed - they "blame" both my PCOS and my age as to why they didn't work (I was 38 at the time). I'm now on my 2nd round of IVF with own eggs and if this doesn't work we're going to look into 1 final round with a combination of own eggs and donor eggs.

[thedutchgirl]

Aug 12, 2020 10:47:24 GMT -5 doggielover said:

What about considering to have a laprascopy to remove the tubes and then do IVF with your own eggs? Some clinics (where I'm at for example) don't have an AMH limit. IVF is going to by-pass the tubes. Personally I would avoid IUI. We did 3 rounds of IUI and all of them failed - they "blame" both my PCOS and my age as to why they didn't work (I was 38 at the time). I'm now on my 2nd round of IVF with own eggs and if this doesn't work we're going to look into 1 final round with a combination of own eggs and donor eggs.

I think I wouldn't even need to remove the tubes, actually. I'd just need to go to a clinic that doesn't have a limit. I think there is at least one in my city, and of course I know I could travel. It's just hard to know where to focus the money, since we are all out of pocket. We have funds, but not unlimited forever, so we keep talking about what is the most bang for our buck, so to speak.

I think we really need to do a second opinion.

[thedutchgirl]

Aug 12, 2020 10:23:22 GMT -5 claudiakishi said:

I don’t have advice but wanted to share support. I’m in kind of a similar boat. I’m 41 and have had CD3 testing and an SHG. We started trying about two cycles ago after I had my IUD removed. My doctor said everything looks okay for my age and encouraged us to try on our own before possibly doing a medicated IUI in the fall. I have read all kinds of conflicting information about that vs IVF for someone my age with my tests results. IVF is not in the cards for us. Anyway, if you ever want to chat with someone going through something similar PM me!

Thank you! I'm sorry you are in a similar boat. I definitely will PM you.

[Mushe]

Eesh, thedutchgirl, I really don’t like that rush to donor eggs without explaining the cost, both financial and psychological, of cycling. I’ve heard so many success stories with DOR, and I’d definitely get a second opinion. You honestly just don’t know until you try it. Maybe you’d get a small number of eggs but they’re fine quality, etc. I tried a bunch of different supplements to try to improve things, and saw some general health improvements when I took fish oil.

My RE was awesome, such as not putting me through the redraw and psychological torture of knowing my updated AMH, and he would always say, it only takes one!

[thedutchgirl]

Thanks, Mushe ! It really has felt all along like he's trying to pad his pockets (my guy's feeling) or juice his stats (mine). He's very, very well-regarded in the Twin Cities, so I appreciate the realism, but maybe it turns out I need a bit more in bedside manner than I would have guessed.

This clinic (most IVF in Twin Cities) has never had, according to him, a live birth in someone my age, with my numbers, out of 56 attempts. They won't do IVF under .5 AMH, as I understand it, so I'll need to try a new clinic. I get wanting a new AMH as my last was a year old, but who knows how a different lab, etc., affected it.

I am doing acupuncture and have been taking CoQ10 and I always take Vitamin D and Fish Oil. I'm torn between the effort of trying to clear my tubes and it delaying my possibility of trying an IVF cycle with my own eggs or just trying a new clinic to try IVF now or at least getting a second opinion.

I am smart and a good researcher, but I just feel so thrown into this, as we only started trying earlier this year, so it is a lot of news all at once.

Thank you to you all for listening.

[Mushe]

thedutchgirl good for you on advocating for yourself, and doing all the research! I’m an attorney, and I think you are too, right? It always helped me feel more in control of an impossible situation. I loved acupuncture, and feel like it really helped me.

[thedutchgirl]

Mushe--yes! I'm an attorney as well. I agree it does help me feel more in control to do the research. Of course it paints a somewhat less-than-optimistic picture as well!

[lovelyshoes]

Don’t waste your time and money on an iui. Check your pm.

[konapoppy]

I am sorry you find yourself in this position.

A few thoughts;
1) definitely no to IUI. It is a waste of time.
2) for me, a big piece was just trying it. If we hadn’t tried ivf, I would have always wondered what if. I have a feeling it may be the same for you if you a) don’t at least consult another doctor and b) don’t try to get some of your own eggs.
3) There are multiple steps to the process and you can choose when to stop. So for example, my first cycle for egg retrieval, I simply wasn’t having enough follicles produce with the meds and so we switched to an IUI. In your case, you could similarly try to see what you even produce and then decide if you go through with a retrieval or call it quits on the cycle.
4) The clinics really want good numbers and they have seen a lot. It sounds like his advice is more stats focused. I know in our area, there are some individual REs who are less focused on the stats and more about patient interests, etc. than the big clinics (the well known one locally is able to use clinic space for retrievals and transfers).

[thedutchgirl]

Thanks, konapoppy. After a week of thinking and sitting with it, I think that I'm where you are suggesting. I think I really do want to try with my own eggs at least once. I'm not sure trying to unblock my tubes are worth it at this point if we can just skip straight to IVF.

[Jalapeñomel]

I’m an oldie over here but came back because we are now considering embryo donation.

I’m 41, and I just had CD 3 labs done on Friday. But the numbers were bad last year, so we anticipate not much has changed, however we also have MFI.

Even my doc was like, “do you want to give it one more go before we look into donations?” but we’ve decided to go ahead with embryo donation (egg donation is way too expensive).

Anyway, I wish you luck, but I wouldn’t rule out getting pregnant with IVF!

[FishChicks]

I just saw this. I'm also in the twin cities, going to CCRM with an AMH of .4, and they've agreed to do own egg IVF with no pushing of donor eggs. If you haven't had a consult with them, I'd suggest one.

[thedutchgirl]

Aug 16, 2020 13:52:55 GMT -5 Jalapeñomel said:

I’m an oldie over here but came back because we are now considering embryo donation.

I’m 41, and I just had CD 3 labs done on Friday. But the numbers were bad last year, so we anticipate not much has changed, however we also have MFI.

Even my doc was like, “do you want to give it one more go before we look into donations?” but we’ve decided to go ahead with embryo donation (egg donation is way too expensive).

Anyway, I wish you luck, but I wouldn’t rule out getting pregnant with IVF!

Thank you! I missed this earlier. Good luck to you!

[thedutchgirl]

Aug 22, 2020 15:54:55 GMT -5 FishChicks said:

I just saw this. I'm also in the twin cities, going to CCRM with an AMH of .4, and they've agreed to do own egg IVF with no pushing of donor eggs. If you haven't had a consult with them, I'd suggest one.

Thank you! CCRM is the clinic I'm planning to call for a second opinion. CRM is where we first went.

[FishChicks]

Aug 24, 2020 11:36:56 GMT -5 thedutchgirl said:

Aug 22, 2020 15:54:55 GMT -5 FishChicks said:

I just saw this. I'm also in the twin cities, going to CCRM with an AMH of .4, and they've agreed to do own egg IVF with no pushing of donor eggs. If you haven't had a consult with them, I'd suggest one.

Thank you! CCRM is the clinic I'm planning to call for a second opinion. CRM is where we first went.

I've known a couple of other CRM girls who both switched to CCRM after some less than stellar results. I've had really good luck with CCRM Mpls over the years and highly recommend them with the caveat that nursing can make errors, so you have to pay attention and follow up.

[thedutchgirl]

Aug 25, 2020 16:25:14 GMT -5 FishChicks said:

Aug 24, 2020 11:36:56 GMT -5 thedutchgirl said:

Thank you! CCRM is the clinic I'm planning to call for a second opinion. CRM is where we first went.

I've known a couple of other CRM girls who both switched to CCRM after some less than stellar results. I've had really good luck with CCRM Mpls over the years and highly recommend them with the caveat that nursing can make errors, so you have to pay attention and follow up.

Good to know, thank you!