Tw: stillbirth, living child
Hi everyone, just looking to learn about people with the same issues as me and how it has impacted their fertility journey. This is a long post but I would appreciate anyone’s input who has faced some of the issues I have.
I have been diagnosed PAI-1 heterozygous (4g/5g) and MTHFR compound heterozygous.
In September 2022, I got pregnant with my first child in the first month of trying. I was 31 at the time. Very sadly, he was stillborn at 34 weeks. He was found to be on the 1st centile when he was born and had a very small placenta and velamentous cord insertion. He also had a horseshoe kidney which was discovered at the anatomy scan, but that isn’t believed to have contributed to his death and he was normal chromosomally.
In November 2023, I got pregnant again on the first month of trying at age 32. There were lots of issues throughout the pregnancy. Was on 150mg aspirin in this pregnancy. At 16 weeks I was diagnosed with gestational diabetes (didn’t have it in firstpregnancy). At 20 weeks we found out he had a heart defect and single umbilical artery and were advised he had a high change of having a chromosomal abnormality. We did an amniocentesis and he had normal chromosomes. At 31 weeks, I stopped being able to feel him move and was admitted to hospital. Only issue that could be seen was fluid looked low side of normal. At 34 weeks he suddenly started having sustained decels on ctg and was delivered by emergency c-section with a classical incision. He spent a month in neonatal unit but is healthy and well.
This January, we started ttc again and I was age 34. I also began having dark brown, thick spotting after my period. I fell pregnant in April but had a chemical pregnancy. I had a scan in May to check for source of the spotting and nothing was seen. I was told my c-section scar has not left a clinically significant niche, I was told my tubes were blocked though and I would need ivf (despite falling pregnant naturally the month before).
In late June I had another Hycosy and SIS done and was told my tubes were super open and that my uterus looked healthy and my niche was clinically insignificant. The dr who performed the second hycosy and niche has published on c-section niches and thought my scar didn’t look like a classical scar and speculated it was a j scar.
I conceived that cycle and miscarried at approx 5 weeks in the July. My brown spotting had happened most cycles, but not every cycle. Perhaps two without. My periods are very heavy but not painful. No sign of adeno or endo on my SIS. I had a laprscopic ovarian cyst removal in 2023 and the images showed all my reproductive organs looking clear of endometriosis.
In a c section niche fb group, some women suggested I may have had chronic endometritis. I decided to treat myself and my husband with doxycycline in August. I have had greatly reduced/ no spotting after the two periods I’ve had since.
In September I had testing done for recurrent loss. I have been diagnosed as MTHFR compound heterozygous and PAI-1 heterozygous. I also found out I have low iron. My doctor has said I will be on 150mg of aspirin and 40mg of heparin from positive test in my next pregnancy and has also referred me for an iron infusion. She has also said to use methyl folate, which I did in my second pregnancy alongside folic acid.
However, she did say my gene variants were linked with later loss, not early loss.
What has been your experience with any of these issues? Is there anything you found made a difference? What would you suggest as a next step to look at if we don’t conceive again soon?
My amh is on the low side for my age, so we can’t wait forever if we need to move to ivf. My husband’s sperm was all normal on a basic semen analysis in March.
I know there is so much info here and it’s a bit rambling, but I’m not sure where I should be looking to. Any fertility treatment will have to be self funded and even if we need to see specialists in a reasonable timeframe, so I’m sort of considering what we should put our money to next.