u/RevolutionaryHelp451

I had my first ER 20 days ago. The first 3 days were painful as expected but then it went down a lot. My period came 11 days after the ER (worst pain of my life due to my endo and not being allowed NSAIDs, but it calmed down) and the bloating drastically decreased right beforehand, so I’m on cd10 now. Outside of the period, I had felt like the pain was getting better and better. I only had pain when I used my abs or walked (and for a bit after), and I stopped walking like a snail and started walking at a meandering pace.

Today though, my pain started getting worse. Even when I had been entirely sedentary (driving for 2h), I got ovary pain, and on top of that, it hurts more than it did before. It’s still a super manageable amount of pain, but I expected it to keep getting better rather than worse.

They only retrieved 11 eggs (AFC 17) but I think they did think I was at some increased risk of OHSS because they lowered the trigger drugs after seeing my estrogen levels. I also don’t have any symptoms of OHSS.

I thought maybe my estrogen rising approaching ovulation could be causing it, but I usually ovulate around cd18 (cd14-20) so that’s not really that soon. I also don’t have any EWCM. It’s still pretty dry as I just stopped spotting yesterday. So I have no reason to think that my estrogen is very high.

What could this be? Should I be concerned? I got booked in next week for bloodwork and an ultrasound because I am leaving for the long weekend (Canada). I hadn’t yet told them the pain was getting worse though - we booked it when I was just concerned it was lasting too long, before it got worse today. Does it sound urgent? Should I delay my trip to get checked out in 2 days instead?

Hi all! I have symptomatic stage 3/4 endo with 2 endometriomas, so I am priming for my first ER with Orilissa 200mg 2x/day instead of estrogen. I started it at 6dpo as directed. Then I started bleeding today at 8dpo, giving me a 7 day LP. Usually I start spotting sometime 8-10dpo and have a 12 day LP, so that’s what I thought it was at first, but I’m bleeding bleeding, so I will probably be starting stims in 2 days.

My clinic told me that most people are on Orilissa for 10 days before starting stims and it would likely delay my period (giving me a 14 day LP), so I am a little shocked.

I thought I had 8 days before stims and suddenly I only have 2. I’m not exactly feeling emotionally ready, and seeing blood when I’m not expecting it is scary.

Is it normal for Orilissa to cause your period to start only 2 days after you start taking it? Will I still get the benefit of priming if I’m only on it for 4 days instead of 10? Can you tell me everything will be okay?

REI doesn’t want to treat me before IVF. Is this a terrible idea?

Background

Age: 27

AFC: 13

AMH: 8.2pmol/L ie 1.1ng/mL

Endo:

• 2.7cm and 2.1cm endometriomas on the same ovary. Last ultrasound a year ago it was only one at 3.7cm. I have been taking supplements since then that I think shrunk it. Tubes have anyways been open.
• My symptoms point me to believe that it is very likely that I have bowel endo.
• I had a CA-125 level of 51 a couple years ago but it was retested shortly afterwards and came back normal.

Protocol

Priming: Oralissa starting 7dpo, before ER cycle

Stimulation: 300 Gonal F, 150 Menopur. This is the max dose at my clinic. *Should I ask about adding Letrozole because of the endo?*

Antagonist: 250 Orgalutran

Trigger: 0.2 Decapeptyl, either 2500 or 5000 HCG

Freeze-all, no fresh transfer.

My RE doesn’t prescribe lupron before an FET outside of severe cases because it is a lot to put the patient through. She doesn’t consider my endo severe because there are no signs of it in my ultrasounds/sonohysterograms besides the endometriomas.

I appreciate that care for my experience, but my egg count is low for my age (more like someone in their late 30s than late 20s) so I am only expected to get 2-3 embryos. I’m not doing PGT-A testing, so I’ll probably only have 1 or 2 real chances (ie with euploids), but I won't know. So I am very worried about throwing my embryos away on an inflamed uterus that they can’t implant in and having to do the whole priming and ER and FETs all over again (not to mention the cost) just to avoid 4-6 weeks of menopause (my RE never prescribes it for longer than that). I also want more than one baby so it would be incredible to have some embryos left over.

My RE says there is no test for inflammation so presumably she doesn’t believe in the accuracy of CA-125 or BCL6. The waitlist for the lap is huge and I am so scared of doing an ER and then a lap and my embryos not taking and being left with no more eggs.

Also of note, I was able to have these tests done before hitting 12 months of trying because I am in a same-sex relationship. We are using known donor (39M) sperm that is being banked at the clinic. SA normal. We have completed the legal side of things, but as far as the clinic knows, I have never tried to get pregnant before. However, we have actually tried at home inseminations for 4 cycles with our donor - all failed. (I am worried they won’t work with us if they find out, because a past clinic of ours told us that they wouldn't.) I know that is not very many, but knowing I have endo makes me concerned that something is wrong, and is the reason we are jumping so quickly to IVF. 

Is there anything I should consider asking her about before following this protocol as is? Any advice for my situation is extremely welcome!

I would love any advice on protocol, information about how many blasts to expect in one retrieval with my weird AMH/AFC situation, or just general advice about how to help my fertility specifically with an endometrioma/endometriosis - I am doing the normal stuff like exercise etc.. I’m on PQ10 and haven’t had AMH tested since, so hopefully that helps!

I have an endometrioma on my left ovary that is not blocking my tubes. It measured 1.4cm in November 2023 and 3.7cm in March 2025. Otherwise, my uterus looks totally normal.

My first ultrasound showed an AFC of 20. My second ultrasound showed 26, with 16 of those on the side with the endometrioma. This is a little confusing for me but I think it is a good sign?

My AMH is not low but it’s low for my age, about 20-25th percentile. I’m 27 but it’s around what you would expect of someone 10 years older than I am. Fortunately that is still enough to not cause problems yet, and I’m not under the impression that there is any reason to think my egg quality is poor for my age.

I had one high CA-125 but they did a follow-up and it was normal, so I don’t know which one was the fluke.

Context on my situation:
I’m in a same-sex partnership. We want to use my eggs for at least two pregnancies, including the first one, and we want me to carry all pregnancies. We are using a known donor (legal side is handled) and currently doing at-home ICI. Semen analysis came back with no issues.
We have tried twice, tracking with bbt, opks, and cf, and I am very confident that we hit the prime 3-day fertile window for both tries.

We are thinking IUI is probably an unnecessary middle-step that will just cost a lot of money ($800+/cycle for the sperm wash and medication) without increasing our chances much. So, if it doesn’t happen on cycle 3, we are considering just jumping straight to IVF. I would also appreciate advice about if this makes sense!

I am just new to this. My fertility doctor only just told me that the cyst is almost definitely an endometrioma a couple days ago. Any guidance or resources would be so appreciated!

TIA❤️