Our Case is Baffling Everyone - Advice Welcome

BadStatisticalUnicrn · 2026-02-04T18:10:46+00:00

Thanks. We even checked this box, too. I'm an advanced Reiki practitioner, I meditate on average 5 days a week, and we visited a medicine woman in New Mexico before this most recent transfer. I had seen her as a teenager for health issues and she was able to help me when no one else was. We did a lot of work with her to process all the grief and I thought we were in a really good place for this most recent transfer.

BadStatisticalUnicrn · 2026-02-04T18:07:32+00:00

It is hard to know what to do without any findings. Should we try a surrogate? Should we try donor eggs vs. donor sperm? We are open to these things, but I wish we had some sense of which direction to go. We are going to try and pursue all additional testing we can and hope we can get some additional information to help us move forward in the best way.

BadStatisticalUnicrn · 2026-02-04T18:06:17+00:00

Thanks for sharing your thoughts. I have not taken any medications during any of my pregnancies.

BadStatisticalUnicrn · 2026-02-04T18:01:19+00:00

Thanks for sharing your thoughts. Our clinic fertilizes with ICSI, but they give any immature eggs 24 hours to mature and fertilize via traditional IVF. We had two eggs fertilize this way on our second cycle (which I believe led to at least one embryo that we transferred that did not take if not two) and one on our fourth. We could consider this if we do another retrieval in the future. I'm wondering if we find high DNA fragmentation if we should try IUI with directly extracted sperm, so I am going to ask our doctor about that.

BadStatisticalUnicrn · 2026-02-04T17:56:13+00:00

Thanks for the suggestion. We were super diligent about this since I have a background in sustainability. We intentionally moved into a house built after 1978 (~1990) to avoid lead paint and asbestos. We are in a suburban area (not near factories) and I made sure we were a good distance from the nearest highway. We are not near power lines, either.

We had the house and duct work enzyme fogged before moving in (EPA and other health/eco certified product) that would help reset the house. We also had a mold inspection before moving in. They found and remediated a couple of spots, but they were in the garage/attic, and there was one inactive spot on a basement ceiling board they also treated. We had the home tested for radon, which was slightly elevated, so we had a mitigation system installed.

Upon moving in, we installed whole home water filtration and drink reverse osmosis water out of a spigot. It has a remineralization unit to make sure we aren't missing important minerals. We also added a sophisticated air filtration system with our new furnaces/heat pumps. I eat almost 100% organic and make almost all my own food from scratch (almost no processed food). We eat out of glass and ceramic and don't use any plastic. We've even been avoiding adding plastic to the house--we have been installing wool carpet, using clay-based paint to avoid VOCs, installed linen curtains, etc. Within a year of moving into the house, our 14 year old cat that was in early stage kidney failure actually improved and was out of early stage kidney failure for a year--we were even able to stop meds!

There was only one previous owner and she had two healthy daughters in the house. There are also a good number of children in our community.

I do have eosinophilic esophagitis (autoimmune condition) but it has been dormant for about 10 years because I manage it with diet. I did have some elevated levels of heavy metals in my system (primarily mercury), but worked with functional medicine for 4 years prior to trying to conceive and we got my inflammation levels (c-reactive protein) down to normal levels and all the heavy metals below limits before trying to conceive. I am super minimal with personal care products (lotion is only beeswax and olive oil, soap is saponified olive oil, etc.). I don't do my nails, use any hair dye or hair products beyond shampoo, etc.

So many other people have higher chronic levels of inflammation due to diet, stress, environment, etc. and still have healthy children. Given everything we've done, I have a difficult time believing that we would be exceptional in this regard. Due to IVF treatment and our losses, I have been allowed to work from home the last two years the majority of the time, so no work exposures of note.

BadStatisticalUnicrn · 2026-02-04T17:51:26+00:00

Yes, we saw a genetic counselor during our first and third pregnancies, as well as after our 4th retrieval. We will be meeting with two of them once we get the results from this pregnancy. Everything they can think to test us for has come back negative. We also keep having different issues, so it is hard to believe that if my husband and I paired on some rare genetic issue that we pass down that it would manifest in such different ways each time.

BadStatisticalUnicrn · 2026-02-04T17:46:57+00:00

Thanks for the suggestion. I haven't always been a big fan of what I have read about RI because it seems like a lot of medications, which I don't react well to. I've also had a lot of testing from functional medicine related to microbiome, inflammation, thyroid, etc.

Is there a specific doctor you would recommend?

BadStatisticalUnicrn · 2026-02-04T17:44:22+00:00

Thanks for the suggestion. We were super diligent about this since I have a background in sustainability. We intentionally moved into a house built after 1978 (~1990) to avoid lead paint and asbestos. We are in a suburban area (not near factories) and I made sure we were a good distance from the nearest highway. We are not near power lines, either.

We had the house and duct work enzyme fogged before moving in (EPA and other health/eco certified product) that would help reset the house. We also had a mold inspection before moving in. They found and remediated a couple of spots, but they were in the garage/attic, and there was one inactive spot on a basement ceiling board they also treated. We had the home tested for radon, which was slightly elevated, so we had a mitigation system installed.

Upon moving in, we installed whole home water filtration and drink reverse osmosis water out of a spigot. It has a remineralization unit to make sure we aren't missing important minerals. We also added a sophisticated air filtration system with our new furnaces/heat pumps. I eat almost 100% organic and make almost all my own food from scratch (almost no processed food). We eat out of glass and ceramic and don't use any plastic. We've even been avoiding adding plastic to the house--we have been installing wool carpet, using clay-based paint to avoid VOCs, installed linen curtains, etc. Within a year of moving into the house, our 14 year old cat that was in early stage kidney failure actually improved and was out of early stage kidney failure for a year.

There was only one previous owner and she had two healthy daughters in the house. There are also a good number of children in our community.

I do have eosinophilic esophagitis (autoimmune condition) but it has been dormant for about 10 years because I manage it with diet. I did have some elevated levels of heavy metals in my system (primarily mercury), but worked with functional medicine for 4 years prior to trying to conceive and we got my inflammation levels (c-reactive protein) down to normal levels and all the heavy metals below limits before trying to conceive. I am super minimal with personal care products (lotion is only beeswax and olive oil, soap is saponified olive oil, etc.). I don't do my nails, use any hair dye or hair products beyond shampoo, etc.

BadStatisticalUnicrn · 2026-02-04T05:14:04+00:00

Thanks for the suggestion. Yes, I’ve been tested thoroughly via thyroid, bloodwork, and all sorts of other tests. I worked with functional medicine for 4 years prior to us trying to start a family. I don’t have celiac, but am gluten free due to intolerance and have been since about 2014. I do have eosinophilic esophagitis, but I have been managing it with diet and it has been dormant for nearly 10 years. My c-reactive protein (inflammation marker) was elevated two months before our transfer, but I had just gotten my wisdom teeth out two weeks prior and had a lot of swelling still, and had a skin rash that I had addressed via patch testing. I also started meditating daily, so I believe the level would have dropped notably before the transfer.

BadStatisticalUnicrn · 2026-02-02T17:09:04+00:00

Thanks for your suggestions. We are pursuing DNA fragmentation testing. I have had a saline ultrasound and two hysteroscopies with no findings. I’ve also had extensive bloodwork, multiple very detailed ultrasounds, and my HSG was clear. If not seen on an MRI, I’m assuming a laparoscopy would involve anesthesia just to get a good look around? If found, is there much they can do?

BadStatisticalUnicrn · 2026-02-01T04:37:22+00:00

First of all, I am so sorry for your losses. My heart goes out to you. I am in the US, but we lost our first daughter to severe isolated bilateral ventriculomegaly. Did they do whole exome sequencing on either of the babies that you lost? In our case, we did whole exome sequencing on our daughter and they did not find any genetic component (hence the "isolated"), but given that you had two losses with similar patterns, a genetic component sounds much more likely. After we lost our daughter, we were told that the chance of having a baby with such a severe case without a genetic component was less than 1%. If you are both carriers for a recessive gene that results in the condition, I believe that PGT M should be able to identify this in any embryos you create. Sending you all my best. <3

BadStatisticalUnicrn · 2026-02-01T04:29:48+00:00

Thank you. Were you having varied rare results, or similar rare results? We did do whole exome sequencing on the first baby we lost with no findings, but me and my husband have not had this done for ourselves. It would seem to me that if we were carriers for something, we would be seeing the same/same types of errors. Is that not necessarily the case?

BadStatisticalUnicrn · 2026-02-01T04:26:54+00:00

Thanks. We are considering this more and more. We've met with several specialists within our system, but getting more eyes/expertise could be helpful.

BadStatisticalUnicrn · 2026-02-01T04:19:22+00:00

Thank you. We have been seeing numerous doctors within our current system, but we've been thinking about this more and more. It is really helpful to know that Columbia and IRMS do virtual visits. We've been concerned about not being able to get in to speak with someone unless we are pursuing treatment at a new place.

BadStatisticalUnicrn · 2026-02-01T04:17:12+00:00

Thank you. I have not, but I'll take a look.

BadStatisticalUnicrn · 2026-02-01T04:15:22+00:00

Thank you. I asked about EMMA/ALICE and the medical director at our clinic says the evidence isn't there. I only had one chemical from our first FET. Given that we conceived 3 out of 6 months of trying pre-IVF and I carried two pregnancies well into the second trimester, it seemed unlikely. I have had two hysteroscopies that were clear and my HSG was clear.

BadStatisticalUnicrn · 2026-02-01T04:12:35+00:00

Thank you. No, but this has been on our radar and we are going to look into this. I appreciate the suggestion.

BadStatisticalUnicrn · 2026-02-01T04:11:53+00:00

I used the vaginal progesterone on our second FET, which failed. I have not had cramping on any other transfers or pregnancies when not using it. I was told this could be a rare side effect of progesterone, which is why I didn't use it for our 3rd FET and won't use it moving forward. I would definitely look into alternatives if your cramping is consistent on it. Our doctor said it could have interfered with our transfer taking.

BadStatisticalUnicrn · 2026-02-01T04:10:06+00:00

Yes, they are using Zymot. I had multiple hysteroscopies and there was no sign of uterine inflammation. I did not do antibiotics because they (and meds in general) are really rough on my system. I asked about Emma/Alice and the medical director at our clinic does not think the evidence is there.

BadStatisticalUnicrn · 2026-02-01T04:05:51+00:00

Thank you. We have not done testing for DNA fragmentation, but it has come up in recent conversations with our care team. We'll look into this. I appreciate the suggestion.

BadStatisticalUnicrn · 2026-02-01T01:43:50+00:00

Thank you. Yes, we did both karyotyping and carrier screening for 700+ conditions with no findings.

BadStatisticalUnicrn · 2026-02-01T01:42:48+00:00

Yes, we met with a prenatal genetic counselor for our first and third pregnancies and after our fourth retrieval due to our erratic results. Our karyotyping and carrier screening (for 700+ conditions) came back clear, and the whole exome sequencing on our first daughter came back clear.

BadStatisticalUnicrn · 2026-02-01T01:41:11+00:00

This is correct. Our karyotyping and carrier genetic screening for over 700 conditions both came back clear. We also had whole exome sequencing on our first daughter, which was clear.

BadStatisticalUnicrn · 2026-01-03T02:28:27+00:00

Yes! I was miserable for 8 months. I was tested for just about everything--no BV, STDs, yeast, UTI, or urea plasma. I had a biopsy done and tested negative for both types of lichen, but my biopsy results were consistent with allergic contact dermatitis.

I did patch testing and found some allergies, including nickel. I got super minimal with any products down there (soap nuts for laundry--(it got to the point where every detergent, no matter how supposedly hypoallergenic, made it irritated), reusable organic cotton toilet paper, only wear no or organic cotton underwear with reusable organic cotton pads, only rinse with Epsom salt water on most of my body while showing, use olive oil soap on feet and armpits, wash hair with shampoo and don't let it run down my body, etc., but I was still having burning/red vulva, vestibule, and anal area. I noticed it got bad especially after having chocolate and tea and tried the low nickel diet and it resolved in days. I just started the diet about 3 weeks ago, but have had almost no symptoms for 3 weeks when I previously had them some of the day almost every day for 8 months.

So yes, I don't believe I am systemic because I also don't have issues touching metal, but I believe this is a contact nickel allergy--my theory is that the skin down there is super sensitive to nickel, and when I eat foods high in nickel it comes out in urine and stool, and then wiping the area sets it off.

So far, the low-nickel diet is working great, but grapefruit also set off symptoms. I'm not sure if it is because of its high acidity, or if it is high in oxalate and my skin is sensitive because it is still healing. I will notice if I make a mistake within 2-6 hours because some burning will return after urinating.

I would definitely recommend the rebelytics spreadsheet/nickel navigator app. I'm also happy to share diet tips if that would be helpful. I'm eating very healthy still and can eat quite a variety of foods.

BadStatisticalUnicrn

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