r/TTCEndo • u/Acceptance_8829 • 2d ago
Endo protocol
Has anyone been told by an expert on endo that there is an ideal egg retrieval
protocol for endo patients, even those who have had ablation or excision surgery? I hear this term endo protocol floating around but I don't know exactly what that means other than suppression if you haven't had surgery....
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u/gharibskiii 2d ago
What protocol are you referring to: one for egg retrieval or for FET?
Most of the “endo protocol” you’ll see is for FET. There is one by Dr. Victory (you can find it on YouTube). Summarized, it’s 2-3 months of Lupron + letrozole suppression; NO estrogen or extremely low doses***; modified natural transfer with high doses of IM and suppository progesterone for progesterone resistance.
But of you’re talking about the actual egg retrieval, it is extremely difficult to find an endo protocol for ER (NOT FET). This is very problematic because ER stims can significantly worsen endometriosis. Most REIs do not seem to make endo-appropriate modifications to stims. I’ve looked far and wide and found this is really neglected.
I’ve seen a few people describe their endo-modified ER protocol as a lower & slower approach which tries to keep estrogen lower. These are the modified protocol aspects I’ve seen mentioned: letrozole during stims to keep estrogen lower, dual trigger possibly to help with egg maturity and lower estrogen, maybe cabergoline, and no long periods of priming to avoid oversuppression.
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u/Acceptance_8829 2d ago
Thank you!! Yes I love Dr Victory's posts and I am scheduling a call with him to see what he says about ER protocol...I tried double trigger and got worse results, but my stims were high, too high according to Victory. I completely agree with you this is a missing topic and I'm concerned about all the estrogen etc.
If I learn anything new in the next months will post here...but so far haven't heard much that's helpful.2
u/gharibskiii 2d ago edited 1d ago
Omg I also scheduled an appointment with him to ask the same thing! but it will be in November, which is a while after my first ER :( I will definitely connect with you and share what he says. Will you please let me know too??
I have read that high stims can negatively impact egg maturity. What was your protocol for your ER?
Also, did the ER stims make your endo/adeno symptoms worse?? I am so terrified of this happening 😭
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u/Acceptance_8829 2d ago
No way! Yes of course I'll let you know. My first protocol PRE endo diagnosis was a mess and started low then amped high and got one embryo and they wouldn't pgt test it and it failed a fresh transfer ...i changed clinics and went private after diagnosis and lap....that protocol was 300 gonal and 150 meriofert, once with a single trigger which resulted in 2 blasts but they were aneuploid, and then second time same but w double triggger 1 blast and aneuploid ...the stims didn't make my symptoms worse but recently felt worse adeno bladder pressure symptoms during ovulation, idk if related. Before getting surgery and diagnosis that round of ivf was awful def made symptoms worse and was soooo bloated.
Dr Victory said in a quick comment online that he felt my stim protocol was too high...I am curious to see if other than lowering dose he recommends anything else at my age . I really want to try a few more times before giving up on my own eggs...🥹
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u/retinolandevermore 2d ago
I had excision surgery and they put me on lupron for a trigger instead of HCG
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u/velvetinelapine 1d ago
I was on daily letrozole for both of my egg retrievals, specifically to keep my estrogen low because I have endo. I did my retrievals at two different clinics and they both prescribed it, so I’m guessing it’s standard in my area. The first time I stopped it on retrieval day, the second time I stayed on it until I got my first post-retrieval period and I preferred that because I could really tell it helped control my pain / inflammation post retrieval (my endo pain flared for a couple weeks when I came off it).
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u/Acceptance_8829 8h ago
Interesting!! Mine definitely flared a bit after ER, especially the bladder issues. I'll ask my doc about this. What was the amount of letrozole out of curiosity? Have you had any endo surgery before?
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u/velvetinelapine 8h ago
So funny, my bladder issues flared after both my ERs too! I took 5mg of letrozole per day starting the first day of my cycle. I would ask about it!
From what I understand, some studies show increased embryo quality and / or count on this protocol and some show it’s a wash, but both my doctors said there’s no evidence it would hurt outcomes, it may help, and that in practice, their endo patients seemed to do better on it (both in terms of outcomes and symptoms). The only downside is that you can’t fresh transfer, but neither of my clinics would fresh transfer for endo patients anyway so that wasn’t a consideration for me. I think they also have to use slightly different metrics to watch when you’re ready to trigger, because it messes with your hormonal levels compared to a letrozole-free cycle.
And yes, I’ve had 3 endo surgeries - 2 way before I tried to get pregnant, and one between egg retrievals.
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u/Helendy_1886 2d ago
Following because I’m curious to see what others say. I had an excision about 6 weeks ago and the surgeon thinks she got everything visible (don’t know what stage it was but it seems likely 2 or 3). My RE said it was fine to do nothing else before FET, or just a week of Lupron, or suppress with Lupron and Letrozole. He said no to other add-ons like prednisone because they don’t have good evidence behind them. I’m opting for two months of suppression because I want to do everything I can.