Seeking advice on endometriosis and extra tests to do

[Goldenfeather123]

Hi All,

My daughter has just had her 3rd FET failed (in total 3 FET cycles failed, with 4 double-donation embryos).💔 One possible cause for the failure could be the relatively advanced age of the egg donor (35 yo).To make more embryos, she is going to choose a much younger donor (~25 yo) but wondering whether worth to do PGTA tests?

At the same time, she is trying to decide what extra tests to do, and where to have them done?

She has stage 4 endometriosis that sticks lower part of her uterus to the bowel (MRI scan). She also had a ~4.5cm endometrioma that was drained to ~2.5cm (minor surgery with Hysteroscopy). Her uterus biopsy for NK cell activity tested normal. She has been tested for some common blood clotting factors and autoimmune antibodies. All are normal.

Both her surgeon and fertility doctor don’t think the endometriosis and endometrioma would affect implantation. And no further tests are necessary according to the fertility doctor. But we are not convinced because in all the 3 years of treatments (multiple IUIs, IVFs, and a batch of donor eggs) she has never seen a positive line! 😢😢

Has anyone with similar degree/size of endometriosis and endometrioma achieved positive outcome (with or without more complicated tests)? We’d love to hear your stories!

Just in case of any potential benefit, I gathered many tests from this forum and from 4 well-known test providers. Of them, the remaining tests my daughter hasn’t done are as below.

Receptivity/infection: EMMA+ALICE; ERA; p53 and VEGF.

Immune factors: NK cells in blood;

IL-11, KIRs, HLA-class I, HLA-DQa genotype;

ANA, LAD, Histone and ds-DNA antibodies.

Clotting Factors: Annexin A5 variant, Antithrombin III (AT-III); Activated Protein C Resistance.

Some of the tests are genetic and we’d like to hear recommendations for reliable online companies to send blood samples. On the other hand, some tests (DQα Genotype, LAD antibody, . . .) seem to be impossible to do when frozen donor eggs and sperm are used. In this case, will the receiving woman still need to be tested? About EMMA+ALICE, we think my daughter doesn't need to do. Because she has no symptoms ever and has been on oral probiotics for vaginal flora since last Sept after a course of Doxycyclin treatment. Have we got it wrong?

Another problem is: none of the 4 test providers will provide tests to patients who are not having treatments with them.

Has anyone got ideas to share? Or more tests to suggest? Or knows where to do the tests? If mentioning companies' names, would you please PM me?

Sending love to everyone on this journey. 💕

[Wuhu85]

I read many times that surgery helped with endometriosis concretely laparoscopy.

[Goldenfeather123 in reply to Wuhu85]

Thank you!

[Elsiedee87]

Hiya, I have been ttc 6 years and never had a positive line, I also had an Endometrioma - fertility docs and an Endo surgeon told me excision wouldn’t help implantation. I did soooo much research that said it did, so I went to see an international endo specialist in London and had excision surgery and my endometioma removed. I’ve since fallen pregnant naturally twice, one the cycle after my op (both in the space of 6 months) sadly miscarried but I believe this is due to age and egg quality. I can share his details if you would like xxx

[Marylyn in reply to Elsiedee87]

I would be checking her MTHFR status as this causes a methylation disorder depleting folate,vitB12& vit B Complex especially vit b6 . A vitamin B12 deficiency can cause infertility,endometriosis, anaemia ,recurrent miscarriages,foetal abnormalities & recurrent miscarriages.It also effects male fertility supplementing with vit b12 Methylcobalamin can increase sperm from 40 -100 million .These tests are recommended active vit b12 as serum is flawed world wide ,folate , homocysteine,MMA ,zinc ,iron studies,Vit E , D & C levels .A healthy diet of meat,seafood,vegetables,fruits nuts ,filtered water & herbal teas .Vegan & vegetarian diets can cause vit b12 deficiency resulting in Pernicious Anaemia .Good luck find an integrative Dr or Drs specialising In Napro technology.

[Goldenfeather123 in reply to Marylyn]

Thank you!

[Goldenfeather123 in reply to Elsiedee87]

Thank you!

[Whatwillbewillbe_]

I don’t have experience with endo but I would recommend the Fertilysis Female Microbiome test which you can order online.

This test ultimately tests for the same thing as the EMMA/Alice but is much less invasive and a bit cheaper. I too had no symptoms and was taking lots of probiotics. However, my results came back showing I had overgrowth of bad bacteria and low good bacteria.

Fertilysis also do lots of other tests.

[Goldenfeather123 in reply to Whatwillbewillbe_]

Thank you!

[Jenno8]

I did have a friend who had this surgery with the endometriosis around her bowel. I could see it helping since endometriosis creates inflammation in the body. Also, she would have better quality of life to remove it.

[Goldenfeather123 in reply to Jenno8]

Thank you!

[BM000]

I have stage 4 endo and currently pregnant following our 6th DE transfer. I have some small endometriomas at the moment but the doctor wasn’t worried about them effecting implantation. After the last failed transfer we did the endome trio (Emma, Alice and era) which showed my bacteria levels were fine but I needed an extra day of progesterone so this time we transferred a day later than usual. I have no idea if that’s what made the difference (it was a different donor but similar age) but It felt reassuring to know we were trying something new. It’s also worth her getting her progesterone checked on transfer day if she’s not had that already. People with endo can have inflammation and progesterone can help with that. The pessaries aren’t enough for me and I had to gave injections too until 12 weeks. We decided to do the genetic testing and with 13 embryos we had 9 normal and 5 mosaic- our donor was 24.

[Goldenfeather123 in reply to BM000]

Thank you for sharing!

[DaisyG03]

you should follow Dr Victory on Instagram, Facebook or youtube instagram.com/rahivictory.m...

He’s an ivf dr in Canada who does a specific protocol for ladies with endometriosis. I have learnt so much off him. He recommends suppressing with lupron and letrozole for 2/3 months prior to FET and other supplements and medications. He also said you need double amount of progesterone x

[Goldenfeather123 in reply to DaisyG03]

Thank you for sharing!

[HelzBelzUK]

Will they do pgta if it’s a donor egg??

My clinic won’t pgta embryos if you’re using an egg or sperm donor so it’s definitely worth an ask.

Has your daughter done a uterine microbiome test? That’s a good indicator of checking for any bacteria in the vagina. Have a look at the fertilysis website. They’re based in Greece but send the kits out to your home. We’ve used them lots of times before and they’re great.

I have stage 3 endometriosis and I done down regulation with prostap before one of my transfers to help supress the endo. I’ve had excision surgery so my Dr didn’t think I needed it but he let me try for two months xx

[Goldenfeather123 in reply to HelzBelzUK]

Thank you for sharing!

[Lunasa81]

Her endometriosis sounds very similar to mine. My clinic put me on long protocol with down regulation due to my endo. Worked for me.

[Goldenfeather123 in reply to Lunasa81]

Thank you for sharing! Was it a fresh or frozen transfer for you?

[Lunasa81 in reply to Goldenfeather123]

Fresh transfer,we ended up with 3 embryos after day 5. Transferred 2 and the 3rd wasn't suitable for freezing. Both embryos stuck.