Partial molar pregnancy - my experience

I had a partial molar pregnancy, diagnosed as a missed miscarriage at 11 weeks back in June. Everything was beautiful and happy and normal until it wasn’t. I had an urgent D&C about 24 hours after they found the fetus without a heartbeat and confirmed that it was, in fact, a partial molar pregnancy. (A PMP is essentially when a fetus and a tumor grow at the same time in the uterus.) The fetus is not viable, and the genetics show that when tested after miscarriage. Everyone on here knows the devastation, grief, heartbreak, and absolute rage that follows. I just wanted to share my story for others to read in the future if needed. Partial molar pregnancies are rare enough that I couldn’t find much online about others’ experiences when I was going through this.

Before the D&C, my HCG levels measured about 221,000, WAY above normal. (This is a sign of complete molar or partial molar pregnancies.) I was terrified of having surgery, but it was actually OK. They put me out completely, so I felt and remember nothing. After surgery, I was told to rest for two weeks. I was also told to go back on birth control because getting pregnant too soon after a PMP can be risky. My nausea, which was severe while I was pregnant, went away immediately. My breasts, which were enormous and extremely sore, took longer to return to normal (about six frustrating weeks). My sleep, which was horrendous, still hasn’t returned to normal three months out. I was sleeping about 1-3 hours per night when pregnant and the months following the miscarraige. The only thing that has helped somewhat is that a couple months after my D&C, my doctor prescribed me with trazodone.

Starting about a week after my D&C, I started getting my blood drawn once a week to test my HCG levels. The doctor wanted to make sure they were consistently dropping, all the way to zero. My weekly numbers tracked as follows: 221300 (prior to surgery), 3398, 1187, 731, 815, 959, 520, 295, 155, 82, 58, 38, 5.

This week, I got to 5, which means, hopefully, that I will be at zero (or below 5) by next week. After that, I’ll continue to get tested weekly or bi-weekly for at least a few more months.

One of the most concerning and frightening things about this process was the few weeks where my HCG actually increased, from 731 to 815 to 959. During those weeks, my doctor diagnosed me with something called gestational trophoblastic neoplasia (GTN), which is a type of cancer-adjacent disease that happens when the molar tissue starts regrowing in your uterus. The treatment is low-dose chemotherapy. I had a CT scan, an ultrasound, and more bloodwork. I was scheduled to start chemo on a Tuesday. On the Monday before, I got my HCG tested again to set a baseline. Inexplicably, my levels had dropped to their lowest yet—from 959 to 520. My doctor had no explanation for this, just that it was good news and I could postpone treatment. My HCG ended up going down on its own from then on.

Once I get to zero HCG and hopefully stay there for at least a few months, my doctor says I can start trying to get pregnant again. I don’t know if I will, or what path my husband and I will decide to take. This whole process has been traumatic, heart-wrenching, and scary, and once you have a molar pregnancy, your chance of having another one goes up slightly. I’m 35, and I didn’t have great fertility numbers prior to this pregnancy. We don’t have any children—this little babe was our first. We very much want a family, but we may decide to try to achieve that in a different way.

I read the posts on this subreddit and it brings me a strange kind of comfort. I also found a therapist who has gone through pregnancy loss, which has helped. We are all in this horrible shit together. I am so sorry for all of your losses. They are real, and they matter so much.