r/DOR•
NarcRuffalo

Anyone else here with BRCA or related genetic mutations?

My dad’s mom died of ovarian cancer ~25 years ago. ~5 years years ago he decided to do some genetic testing and found out he has a mutation for the BARD1 gene (BRCA-associated RING domain 1). My sisters and I all tested and are positive as well (lucky us!). At the time I didn’t think much of it because the current cancer guidelines didn’t suggest doing anything differently, but it seemed helpful to know to be extra vigilant. It’s only now that I’m experiencing fertility issues that I realized there may be a connection.

One of my sisters has an ovary removed in her 20s due to painful cysts. My other one got her eggs frozen around age 33 just because, and she apparently had lower eggs than she should’ve for her age. Now for me, after trying for 15 months with no success (age 33), I found out my AMH is only 0.4 ng/ml so I was sent to an RE/IVF clinic. When they looked at my ovaries on cycle day 2, I only had 2-4 follicles total, when healthy ovaries should each have about 6 according to my doctor.

Little is still known about the effect of BRCA on fertility, and even less is known about BARD1, but it seems like it’s highly likely. I wish I had realized earlier so I could’ve started IVF asap. I also wish my doctor tested AMH when I saw her at 6 months of trying instead of just telling me to relax and wait until it’s been a year, but what’s done is done. I’m just wondering if anyone else has a similar experience. I’m also wondering if I should specifically test my future embryos for the BARD1 mutation as well, although maybe I’m getting ahead of myself because I’m only just about to start priming for my first IVF cycle.

Posted Apr 28, 2026, 7:06 PM UTC

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