Your Advice: Molar Pregnancy

KingLED

Please share your advice and/or anything you wish you knew before, during, or after your loss to help others that are also going through a loss with a molar pregnancy.

kreardon11

***lurking and siggy warning***

I was told I had a blighted ovum at 8 weeks. The fetus stopped growing at 6w6d. We never saw a heartbeat. My doctor gave me a script for misoprosal (sp?). Since I've had friends take the same stuff for their abortions, I just didn't sit right with me. 

I opted to let the miscarriage end on it's own, but it didn't. I waited nearly a month. No cramping, no spotting, no pain..AT ALL. I called me doc for a D&C because I just couldn't bring myself to take the pills. 

A week or so after my D&C the doc who did the procedure (not my doc) called and said we were benched for 6 months because I had a molar pregnancy and I could get cancer. This call came at 8am before going into work. I was a disaster. 

They gave me no information, and it's because they didn't HAVE information to give. They just passed me off to the clinic for lab-work until it was normal. I was immediately normal. I had two other opinions: one out of the tropoblastic disease center in Boston (Originall from CT) , and one out of Chicago (where I live now). These docs deal with this on a regular basis and they told me the wait time they tell their patients is 3 months. We waited 4.5 months, and I switched docs to a new practice. My original doc was an idiot and never followed up with me. Funny since they threw out the C word. 

What I wish I knew before: That it was a possibility. I had never even heard of this. And it's terrifying. I also didn't have hcg drawn before seeing my doc for the first time. I will always recommend that. 

What I wish I knew during: The experts in the field say that once it goes down to 0, it won't go up. The two specialists I spoke with have never seen a patients hcg rise after hitting 0. That you need to take each day at a time. Don't think about the 6 months as a collective thing - live hour to hour if you need to. 

Advice: 6 months is a long. ass. time. Stay busy. Know that it's not the end of the world. Know that there is a high probability you will get pregnant and have a healthy baby. Also - educate yourself and seek a specialist. I recommend both out of Boston and Chicago. I am a patient at Northwestern Hospital Chicago - one of the largest in the Midwest, and they only see about 4 cases of this a year. With that being said - they admitted to NOT knowing very much. I also got a therapist and started taking care of myself. It helped a lot. My husband went to therapy too. Your friends will not understand - at all. They will not understand how pregnancy and a cancer scare are related. Find support groups. Find others that have lived through it. Most importantly - know that this too shall pass. 

***This is just my experience. I am not a doctor.****

schuebja

@kreardon11 Thank you for sharing your experience. I had my D&C last week and found out on Monday that the pathology showed it was a complete molar pregnancy. I just started having my weekly HCG drawn this week, so I know I'm in for at least 6 months per my OB. I'm trying to focus this time on myself and getting healthy. I've been contemplating contacting a specialist just for a second opion. I'm not too far from Chicago, so it's good to know that there's a specialist close by.

kreardon11

@schuebja - You're totally welcome. If you're contemplating the specialist a bit more, PM for his info. We did lots via email as well which was super helpful with a busy work schedule. 

The other thing I forgot to mention, is that once you have a molar, you must always be monitored in future pregnancies as well. It's kinda like mono - once it's in your system it can show it's ugly face again. Even after a healthy delivery, your placenta is sent to pathology for examination. This is all precautionary, of course, but FYI. 

Carissab11

Thanks everyone for sharing your experiences! I am one week down from my 2nd D&C, overall feeling ok! I have my follow up appt in a week in half and should get my results of the "tissue" testing! The initial thought was a molar pregnancy based on the sonogram. The doctor did say after the procedure she's not so sure...so now I'm waiting in limbo!! I keep playing best and worse case scenarios in my head and driving myself crazy! Only thing I can do is wait at this point! Day by day......

FigureSkater8

I'm so glad to see this thread.  My story is...I had a feeling something was off early in pregnancy because the sonogram dates were off from when I think we conceived.  However I hoped for the best and tried to stay optimistic.  We saw a heartbeat twice at 5 and 6 weeks. I finally pushed for another sonogram at 11 weeks, and they discovered a MMC had occurred at 8 weeks. I requested a D&C.  Two weeks later at a follow-up they told us we had a partial molar pregnancy.  It was pretty upsetting because it was like a whole new miscarriage blow all over again.  

I've been monitored for the past 6 weeks and my HCG levels have dropped from 2,000 to 800 to 500 to 290 to 180 to 85. I am still bleeding (have ever since) and was wearing light pads until last week when a scary thing happened.  I had a massive gush of blood that instantly soaked the light pad and was full of clots.  So scary.  I called the Dr. and was close to deciding to go to the hospital (I was overseas).  It stopped.  A sudden gush of blood happened again 2 days later so when I got back to the US they had me come for an ultrasound.  They saw that I still have a 4cm amount of tissue inside.  They really scared me by saying I was going to need a repeat D&C and throwing around the word oncologist.  However when they also saw that my level dropped to 85 this week they said that was a good drop and that we'd continue to monitor the HCGs rather than take action yet.  So the journey continues...  

Has anyone had sudden blood loss like me, and has anyone had remaining tissue that eventually "came out" on its own?  Thanks-

@kreardon11 - it makes me happy to see your siggy ticker!  It's hope!

kreardon11

FigureSkater8!

I have a question/comment for you - I didn't realize that you can have a molar pregnancy AFTER seeing a heartbeat. What did your doctor say about that? I guess since it was partial it was a placenta issue? (Please forgive me if that comes across insensitive or dumb!)

FX for quick healing!!!!

megt216

@FigureSkater8‌ I had some retained tissue as well. Your numbers are way better than mine though! I'm still at 1,000. Some of mine did pass after a lot of cramping and increased bleeding (I was still bleeding when they found it via ultrasound). Some of my tissue still remained as well, but with your numbers i would def wait before any kind of other methods, especially a repeat d&c. My doc was considering one but she was concerned about scarring which could impact fertility. We did the methotrexate route instead, just 1 shot though to see what happens.