Seeking advice after two failed IVFs

[Neener]

Hi ladies - looking for any advice or success stories. Below is my TTC history. I have my WTF appointment with my RE in about 10 days and I want to be prepared with questions and suggestions for next steps. I do like and trust my doctor, the clinic and their lab. But I am open to getting a second opinion if I need to.

I've had AMH measured 3 times in past 2 years (.69, 1.92, .94) - Dr. thinks I'm probably close to 1.0 based on AFC of 9. Based on these numbers Dr. thought I'd easily get 5-7 eggs each cycle with 3-4 blasts. Not the case! Looks like I'm a poor responder or I have both low count and quality of eggs. Neither DH nor I are ready to consider DEs.

Other things I've been doing: prenatal with folate; Ubiquinol; Vitamin D; Ovasitol; Omega 3; Iron; and acupuncture. Low carb diet - no sugar, wheat, gluten, caffeine or alcohol.

TIA!

Me - 37 (Ovarian Dysfunction?) DH - 48 (Mild MFI) - TTC #1 Since 1/15
6/15 - Start having irregular cycles with extremely heavy bleeding. Unexplained - hormone levels seem fine
3/16 - RE recommends IUIs followed by IVF - cycles regulate
7/16 - IUI #1 with Clomid and Trigger - BFN
8/16 - IUI #2 - Trigger only - BFN - Switch REs due to insurance
11/16 - IVF #1 - 7 follicles - 5R/1M/0F with ICSI - We guess that I was over-suppressed on BCP and triggered too early
1/17 - Start low carb diet and lose 20-25 pounds
2/17 - Discover mild case of Hashimotos. Start .025 mcg Synthroid although TSH levels always appeared normal
3/17 - IVF canceled due to cyst
4/17 - IVF #2.A - Lupron flare - Only 5 follicles and two dominants. Convert to IUI with trigger. BFN - go back to original protocol but switch to estrogen priming instead of BCP
7/17 - IVF #2.B - EPP + Omnitrope - 8 follicles - 3R/3M/3F with ICSI - transfer the only blast that makes it to day 5 (grade BB) - no frosties - BFN

 

[LadyLovenox]

I highly recommend dhea (micronized 25 mg 3x a day). My son was conceived on round 4 of ivf...29-30 years old during rounds. Afc of 10-12, amh .88- 1.34. First round got 8 eggs, 5 mature, 3 fertilized, bfn. Second round got 14 eggs, but only 4 mature, 3 fertilized bfn. Started dhea...amh shot up to 22...retrieved 17 eggs, 15 mature, 11 fertilized. Still bfn....but we finally found an implantation issue w inflammation in my uterus that was corrected by going gluten free. Final ivf 15 retrieved, 13 mature, 10 fertilized, pregnant w twins...lost one at 8 wks, but have my son. Amazing the difference. Never made it to blast until starting dhea. Need to be on it at least 3 months to see improvement.

 

[Neener]

Thank you, lady! I've considered DHEA for a while now and it's on top my list to ask my RE. I read that for some women it can compromise quality, especially those with high testosterone. I've always tested on the high side of normal. I read an article about it by Dr. Sher which I can't seem to link here. So glad that it worked for you and congrats on your son! I can't believe your AMH jumped to 22...I didn't know that was possible!

I'm curious to learn more about your inflammation. How did you discover it and realize it was from gluten? I've been gluten free for 6 months and low carb which has reduced overall inflammation. I've also reduced dairy but not cut it out completely.

 

[HopeLoveWins]

I have no specific tips but just wanted to say good luck to you and to keep going if you have the strength and funds to. And when you hopefully get that baby all the heartache now will have been worth it. Baby dust to you x

 

[LadyLovenox]

Its kind of crazy....after my first two failed transfers...they did an endometrial biopsy to see if anything else was going on. It came back showng chronic endometritis (which means inflammation...different than endometriosis). Anyway, they said they didnt feel the inflammation would hinder implantation, but they treated me with some strong antibiotics regardless, and did a repeat biopsy afterward. Inflammation was still present. Again they said it shouldnt hinder implantation. They put in two top quality blasts on my third transfer, and still no luck. My dh was convinced inflammation was the problem....his take on it was always "if something is inflamed, it's not ideal...and you need an ideal environment for implantation" which I tend to agree with. So anyway, more antibiotics, another repeat biopsy (still showng inflammation) FET of high quality blast, and nothing. Finally before my fourth and final fresh cycle, my dr called me. Said she just read a study that showed that endometritis DOES effect implantation and actually drops success rates to 7%...which explained why even my high quality blasts werent sticking. So she recommended I try a gluten free diet to naturally combat the inflammation since antibiotics werent working. I went completely gluten free and my next biospy showed no inflammation for the first time ever! So we went through with a transfer and got pregnant with twins! Dh said that proved it was the inflammation that was the problem. I was always still skeptical, wondering if it was just a coincidence, UNTIL....we decided in february of this year that we better start trying for #2...just having sex. No fertility treatments, no dhea, nothing. I stayed gluten free and we got pregnant that very first month on our own!!!! I'm now 23 weeks pregnant. Shock of a LIFETIME, after all we went through for my son!

 

[RPDR]

LadyLovenox- Would you mind telling me a little bit more about your endometritis? I've been tested for Celiac's and the bloodwork came back negative, but I'm still curious to hear more about your story.

My 2nd RE thought I might endometritis due to failed implantation and put me on antibiotics, but that transfer still didn't work. She never did a biopsy to "officially" diagnose this though.

How long did you have to eat gluten free? Does the biopsy have to be taken at a specific time during your cycle? I have a retrieval next month (freeze all cycle) and wonder if the doctor could take a biopsy at that time.

 

[BronteForever]

I think a lot of this is going to depend on what you are willing to do and funds available. You can definitely keep trying multiple IVF's. I took off 7 months in between and researched everything under the sun on vitamins to help. Didn't see a vast difference from cycle 1 to 2 at all. Though I also didn't do DHEA because of high testosterone. We did add in human growth hormone into the stimming process though the second round even though my doctor was kind of against it. I would have been mad not to try something to help in addition though.

Sometimes it's just luck of what eggs they pull during retrieval. I think the stimming process is more important than anything and critical to getting good eggs. Our two cycles also failed because of poor egg quality, but my AMH isn't low. I just have bad eggs. We could ultimately keep trying but our funds were tapped out and we would have likely had the same results. You can keep trying and trying until you get the correct combo, but it truly is a matter of if you are willing to take the time, resources, money and emotional drain of that.

For us, we are now looking into either donor embryos which are much cheaper then donor eggs or traditional adoption.

However, it is not an easy decision and not a fun one. Frankly it sucks and I'm so incredibly sorry you are at this point. It's not easy.

Now that we are in less of a rush if we decide on donor embryos because it's not as time sensitive, we have taken from January to just try to heal. We aren't really anywhere near ready to move onto the next step either. Still a grieving process.

 

[LadyLovenox]

RPDR... No problem...I am an open book, and will answer anything I can for you! I also tested negative for celiac, and had no indication that my body didnt like the gluten, other than uterine inflammation, which I never knew about until my biopsy. Pretty crazy.

the biopsy DOES have to be done at a certain time in your cycle, but I don't remember what that time is...I just remember that it was time sensitive.

I went gluten free in july of 2014, and had my repeat biopsy in october of 2014 that finally showed the inflammation was gone. So in just three months it was gone!

The study that my doctor had read, had put all patients on doxycycline and flagyl, performed a repeat biopsy, nearly all patients got rid of inflammation and success rates went from like 7%- 60% or something like that. So she still put me (and dh!) on the doxy and flagyl, to stick to what the study did, even though my inflammation was gone. You have to finish these drugs before embryo transfer though, so make sure you mention it soon, so they can plan for that.

You will get there...just keep pushing through one step at a time. I found that fertility clinics don't really care what's causing your infertility, they just want to treat it. I mean, I know they do tests, tell people, oh you have high fsh....or whatever, and then jump to ivf to get you pregnant. I know everyone there is desperate to get pregnant, but I really wish they'd look for the cause...WHY does this person have high fsh? Find the cause, find a solution, instead of just pumping drugs into us.

 

[Neener]

Thanks so much, HopeLoveWins. How very kind of you.

LadyLovenox! Such an incredible story! And I completely agree with you regarding clinics not looking for the root cause. I guess in their minds the cause doesn't matter to them as long as the meds/ICSI/testing overcomes the cause. But for those of us with low numbers we don't have the luxury of just trying everything until something works. Wish they would take a step back to really examine everything that is going on.

Thanks for your kind words, Bronte. I believe I've seen some of your posts on a few other threads. I'm sorry to hear you're in the same situation. I feel like I have some more cycles left in me before I call it quits. I have money put away which is supposed to be the down payment for a house. But, honestly, if I don't have kids, having a house just doesn't seem as important in the long run. I agree with you on the luck thing. The fact that the second cycle gave us 3 eggs which all fertilized made us initially very grateful. They all made it to blast but 2 of the 3 were considered poor quality. I was thinking that at least 1 of the 3 would be normal and stick because I've seen ladies much older with better numbers. It's disappointing but the fact that we got much closer this cycle compared to the first gives me the hope to continue trying. I hope my Dr. feels the same way. I feel like I need a couple more tweeks to my stims to get more eggs retrieved and maybe not fry them so much by the meds. It's so scary to change anything because you don't know which changes caused the improvements. If we keep trying enough the numbers have to eventually fall in our favor right? (I'm trying to convince myself of this.) I'm so sorry that you are also in this situation. Please do take the time to grieve and come to peace with your decision to pursue embryo adoption. Wishing you the best of luck.

 

[BronteForever]

Yes I have been around the boards but have been on an extended break. I wish there was a bit more activity on here regarding Donor embryos/eggs and adoptions. But I'm just slowly dipping into learning more anyway. Lots to figure out.

If you are all in and have funds then I definitely recommend acupuncture. For no other reason then your acupuncturist will help with stress and then holistic approaches to get your body healthy and hopefully help with egg quality. My acupuncturist put me on a no dairy or gluten diet too. It was also for inflammation or as they like to call it "dampness." Though I did cheat some which I don't think helped.

I also highly recommend Rebecca Fett's book "It Starts With the Egg."

If you are getting to the blastocyst stage with your embryos that's a great sign. That hopefully means you'll get lucky and get at least one higher quality embryo next time. All it takes is one good one and hopefully they will investigate more if anything at transfer stage is hindering implamantation.

Good luck and best wishes!

 

[Neener]

I totally understand about having to take a break from the boards. There were a couple of threads that I actively contributed to or lurked and I decided it was best for my mental health to lay low for a little. However, I'm so grateful to these forums for the support and medical experience everyone has!

We have our appointment to discuss next steps tomorrow. I'm waiting for the official word from my RE that she's on board with us and willing to try another round. I also have a second opinion consult in 2 weeks.

I completely agree with the acupuncture. I did about 8 sessions before my second round but they were so spread out and probably not enough. I used up my insurance benefits for that so I need to see if they will work with me on pricing for a package. Do you think 1 session per week before stims would be enough? I've been gluten free for 6 months now but only on week 2 of dairy free (although i do still have butter and Parmesan cheese on occasion). I think cutting dairy will be so much harder than the alcohol, caffeine, sugar, wheat, grains, fruit.

I just finished "It starts with the egg" on Saturday! Read it cover to cover in 2 days...the research is so compelling! I'm definitely a believer now. I figure I tried 2 cycles and 6 months without DHEA - I might as well try a cycle with. I'm kind of irritated that neither my first nor second RE suggested this to me already! Especially when I see a lot of clinics have cocktails they put patients on right when starting.

During any of your research did you find any evidence that certain stims are better or worse for egg quality? Both cycles I was on 150 Menopur and 300 Gonal F and I have read mixed things about which one is better for egg quality, especially for DOR cases. This is one of my questions for Dr. but my gut tells me that the meds might not be as critical as getting my insides healthy first. I think it will make me feel better to at least have a plan and know I'm working towards something even if it's going to be pushed out a couple of months.

Thanks again for your support and listening ear. How are you doing in your journey? Hope you're being kind to yourselves during the grieving process.

 

[BronteForever]

Acupuncture is definitely supposed to be best around transfer time. So some people only do it the night before or day of transfer and then a few days later. Our clinic had an acupuncturist literally next door. However I went to one to help with egg quality specifically so she recommended 3-6 months of weekly treatments before you see results. Primarily because it takes that long to get down to improving stuff on the cellular level. I went weekly for 6 months. Same thing with supplements/vitamins. It takes a few months. I have crappy insurance so had zero converage for acupuncture or anything related to IVF. We were all self pay which is part of the reason we can't keep doing rounds. We have to pay off the $35,000 debt first too. However I figured we were already paying a ton so I wanted to give myself the best chance. We might have gotten slightly higher quality eggs from round two vs. one, but it wasn't a ton. However at least I can say I tried and that helps a bit emotionally.

And RE's won't bring up supplements. Most don't. Research is still scarce on the subject. After I brought it up all mine did was give me a list and say it might help but it might not. I had to research everything on my own. DHEA is the one I'd really talk to them about though because they can tell you better based on all your hormone levels if it's even worth the risk to try it. All the others aren't really harmful. They just might not be helpful.

And honestly there is not great info out there about egg quality. Some people think stimming for briefer period of time yields better results while others recommend a long slow stim cycle over almost a month. REs opinions vary a ton in regards to egg quality. My RE said there's lots of things they are working on now in lab settings to bypass poor quality eggs like switching out the nucleus of one egg with a donor egg (or something like that) so it retains all your DNA but has the necessary mitochondria to assist in the important growing and division stages where most embryos don't make it when there are poor eggs.

But none of that is here yet. So it's a bummer. Unfortunately with poor quality eggs one of the only things that seems to help are doing multiple cycles in the hopes of finding the better eggs and switching up protocols to see what helps you specifically. But anything you can do to help those eggs you do have stay healthy and be able to have energy to divide in the first few days is a bonus.

I'd definitely talk to them about switching protocols too. I switched to a Lupron cycle for my second one to try to help. They will have much better info based on how you responded to make protocol suggestions though.

Anyway, not sure if you have had your appointment yet. But hope you get some more info.