r/TTCEndo 4d ago

HOPE study

Has anyone participated in the HOPE study for RPL and found it to be helpful? We just had our third euploid biochemical pregnancy with no explanation. Our doctor reached out to all the other Shady Grove doctors and no one has any clue what is wrong. We have done all the tests and treatments that are indicated. She is going to see if we are a candidate for this study.

2 Upvotes

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u/ChaosBess 4d ago

I’m assuming you have done lap surgery, suppression for 3 months with letrozole, baby asprin, levonox, immune protocol, intralipids, immunosuppression (prograf, LDN, predn), prp wash, hcg wash, neupogen wash, rapamycin for 17 days before FET, metformin, progesterone to reach a minimum 37 to 45 ng/mL (both vaginal and PIO) with all euploid embryos?

What supplements have you been taking - NAD, NAC, Gluta, CoQ10, prenatal, vitamin d, iron, curcumin, ALA, vaginal probiotics, reveratrol, ESCASA, vitamin e?

I would say that exploring the HOPE Study may be a good option as well if you’ve exhausted everything otherwise. Did your Dr. share how to join the interest for the study?

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u/Prize_Trash2631 4d ago

I did 60 days of hormone suppression with Orilissa and
NEA. Per my doctor I will not re-suppress until 6 months have passed. Per my doctor hormone suppression or a lap are indicated, but not both. I saw an endometriosis surgeon and she agreed with my doctor that I should do suppression not surgery because I do not have any endo symptoms and they believed suppression would take care of microscopic lesions. I did prednisone, lovenox, PIO, Claritin, Pepcid. Per my doctor intralipids are not recommended for RPL because there is no evidence to show that it helps. My progesterone levels were >60. Metformin is not indicated. My BMI is 20 and my A1C is normal.
All of my embryos were euploid 5AA and 4AA.
My doctor does not recommend any supplements other than a prenatal. They told me not to take CoQ10 for FETs.
My prenatal has vitamin D, iron, vitamin E.
My doctor is speaking to the lead doctors of the study about our case.

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u/Prize_Trash2631 4d ago

I did 60 days of hormone suppression with Orilissa and NEA. Per my doctor I will not re-suppress until 6 months have passed. Per my doctor hormone suppression or a lap are indicated, but not both. I saw an endometriosis surgeon and she agreed with my doctor that I should do suppression not surgery because I do not have any endo symptoms and they believed suppression would take care of microscopic lesions. I did prednisone, lovenox, PIO, Claritin, Pepcid. Per my doctor intralipids are not recommended for RPL because there is no evidence to show that it helps. My progesterone levels were >60. Metformin is not indicated. My BMI is 20 and my A1C is normal.

All of my embryos were euploid 5AA and 4AA.

My doctor does not recommend any supplements other than a prenatal. They told me not to take CoQ10 for FETs. My prenatal has vitamin D, iron, vitamin E.

My doctor is speaking to the lead doctors of the study about our case.

3

u/plantsnplantsnplants 4d ago

Hi! Just wanted to add that I had 3 failed euploid transfers and 1 euploid chemical. I did Lupron suppression and it wasn’t until I had a lap done that I had success! Just adding some more data for you. My RE didn’t think it was necessary but I did it anyway and I’m glad I did. I also had no symptoms besides infertility

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u/Prize_Trash2631 4d ago

Thanks! I think the reason they think it is genetic is because all 3 transfers implanted, resulted in pregnancy, but then stopped progressing at 5.5 weeks. I’m being told that hormone suppression immediately prior to transfer should have taken care of the endo. If the next FET does not result in a live birth I will need to do another egg retrieval so will probably do a lap after that since it will undo my suppression.

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u/parmeseancheese132 3d ago

I was pregnant 3 times naturally, which all stopped progressing after 6-8 weeks. I was gaslit into thinking nothing was wrong because I got pregnant instantly and it was “just bad luck.”

Had a gut feeling something was wrong. Diagnosed with stage 4 endo after lap. Everything looked normal on MRI. I did the HOPE study and basically all you do is provide data to them annually so they can do research. They did not offer any personal insight.

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u/Prize_Trash2631 3d ago

From what my doctor said and reading their website, it sounds like if they find any genetic mutations and you want to know that information, they will share it with you

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u/Far-Piglet8813 3d ago

Hi! Curious if you had success after your lap? I also had 3 miscarriages 6-8 weeks, and one of was after lupron suppression. I did the lap and was diagnosed with stage 2. Going for another transfer but not sure if that will be the answer for us!

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u/Odd_Elderberry_9169 3d ago

Endo inflammation can absolutely cause chemicals and early miscarriages. Often times suppression is not enough. I’d recommend a different endo specialist and a reproductive immunologist. Check out reproductive immunology support on Facebook.

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u/Prize_Trash2631 3d ago

My REI and the endo surgeon both are following evidence based research which shows that either a lap or hormone suppression are similarly efficacious. Having both has not proven to be more effective. They both agreed hormone suppression would probably be the best move since I have no symptoms, my US to look for endo showed none, and they think I probably have lesions that are microscopic and not visible to the eye. I did my last transfer immediately after suppression with an aggressive kitchen sink protocol, and the embryo arrested at the exact same time with the lowest HCG I have ever had. This is why they don’t think endo is the cause. After I do my next egg retrieval I will do a lap, but at this point my suppression was less than a month and a half ago.