AW... new problems/diagnosis

emmuffy

After my failed IVF in September, I went for a second opinion at a different clinic. The second opinion RE recommended an endometrial biopsy (Endometrial Function Test, aka EFT) to check whether certain proteins were expressing correctly (basically to check whether I may have an implantation problem). The biopsy took place in Nov. I almost decided not to do it, because it costs $600 and I figured the odds of having both an egg quality problem and a uterine lining problem were pretty much nil, but I went through with it anyway on the basis that I wanted to cross all my Ts and dot all my Is as part of getting a thorough second opinion. I had pretty much forgotten about the biopsy, and had already made plans to cycle again in January with my current RE with a slightly revised protocol (adding Saizen to help with egg quality). Today I went to see the second opinion RE to review the biopsy results, and they were abnormal. Apparently I have a mild degree of glandular developmental arrest. This could be related to endometriosis. (I have a probable endometrioma, but no other symptoms of endometriosis, and I've never been treated for this condition). The second opinion RE advised that even a "mild" case of glandular developmental arrest can completely preclude implantation, and that there are two ways of potentially treating this issue 1) endometrial scratch as part of IVF cycle, effective in approximately 80% of cases 2) IVF with freeze-all cycle, followed by 3 months of Lupron Depot (effective in 100% of cases), followed by embryo transfer. He recommended the second option.

I know I'm being whiny, but I really didn't need this. It's enough of a problem to have a small number of eggs that don't work, and now I'm finding out my ute is broken too. Fuck. This. Shit.

I really don't want to go on Lupron Depot, partly because it sounds scary and partly because I'm impatient and the idea of waiting three more months sounds horrible. But if I didn't go through with it and my next cycle didn't work, I'm sure I'd always wonder "what if". UGH.

dancerspose

I am so sorry you're dealing with this, and certainly understand the anger and sadness.  As ketchup said, give yourself some time (and wine) to absorb this news and all the information the doctor gave you.  When you feel ready, I'm sure you'll make the right choice for you.

susykat77

Totally sucky about the new diagnosis. I'm happy the new RE has a plan  although it involves a bit of waiting. Sending ((((hugs))))

katers79

I'm sorry for your news. IF is so unfair!!

I think I'd go with lupron depot too. For 100% efficacy-- it would be so worth it IMO to not be let down with another cycle. And that says a lot because I *HATE* lupron, aka the devil drug.

GL with your decision and FX that it brings you your take-home baby!

BunnyBerry

I'm so sorry. But I am also so happy that they found this!! Good for you for getting a second opinion and going through with the testing!

I love anything that says it can solve a problem "100%" of the time. Not that the endometrium is your only dx, but at least it will be out of the running as an issue. 

I am just so, so sorry that your treatment is being held off so long like this. I think my biggest fears in this process are 1. Never having a child, 2. Having a loss, and 3. Having to postpone next steps for medical/financial/schedule reasons. This really sucks. ((HUGS))

SND1231

Totally understand how you are feeling and like PP said, you have a right to be ticked about it! I agree that 100% is just too great of a number. I would never want to look back and wonder what if.  Good luck to you!

BandM14

I'm so sorry for the frustrating news . But, I do think it's good that you went through the testing and discovered this issue, rather than continuing to do IVF cycles and have them not work due to the endometrial issue. Like PP said, if it were me, I would wait the 3 months to get the 100 percent chance of success... and during that time I would take whatever supplements, lifestyle changes, etc. that the doctor recommended for egg quality, so that I felt like I was addressing both issues during the time on the bench. Whatever you decide, I'm wishing you so much luck-- you definitely deserve some good news, and I pray that the new plan works for you!

MustangChic

So sorry about the bad news. ((Hugs))

wanderlust508

So sorry you were thrown this curve ball I hope you are rewarded for all this crap with some really good news after the issue is addressed. (((Hugs)))

emmuffy

Thanks everyone for the support. It really means a lot. I'm still trying to process everything. Hopefully I can get in touch with my current RE's office and get their perspective on these results/ treatment options. I need to do some more research on this test and the results so that I can feel a bit more confident in my decision-making. I don't want to rush into Lupron, which sounds awful, ugh. On the bright side, AF still hasn't shown up, so there's no hurry quite yet.

emmuffy

lemonliz  that is so helpful... any chance you still have the citation for the study?

emmuffy

Thanks @lemonliz, I will definitely look at the studies you found .

My current RE got back to me to say that she won't comment on my EFT (biopsy) results, because she doesn't order that test, because she isn't convinced of its validity. What am I supposed to think at this point? Who knows. She did say she would meet with me in the new year, so I suppose we can talk it through more then. In the meantime, I think I will try to do some more research on the tests/issues to give this more consideration. From what I can tell, it isn't a widely used test. In fact, my Google searches to find others who have undergone this test suggest all (or substantially all) of the patients come from my second opinion clinic, which seems weird to me. Why wouldn't this test be more widely used? Here is a link to the test for anyone interested: https://medicine.yale.edu/obgyn/kliman/infertility/eft/index.aspx

emmuffy

lemonliz  yes any cycle would be with BCP (I did EPP last time with androgel supplementation, but I can't do that if I'm on the DHEA). Good to know the BCP may help with potential endo issues! That is encouraging.  It's hard to know what to do about the conflicting REs. If I wasn't so sick of doctors altogether I'd consider a third opinion .

PS Thank you again. You are such a good researcher!

dominicandreamer

Ketchup put it perfectly.  It's really shitty that you have an additional diagnosis to deal with on top of everything else but hopefully it will help your chances knowing all you do.  My fingers are crossed for you.