What to expect & how to cope with a molar pregnancy.
Please note: This article has not yet been reviewed by a medical professional and is not intended to be taken as medical advice. Always refer to go to your medical provider for your medical care. This is intended to be peer-to-peer support only.
“It’s just so confusing and scary when they throw in the cancer word when they tell you that you are miscarrying. It’s like a double whammy. Then they tell you it’s so rare, that they don’t know what to tell you. So frustrating!”
“I found out my last miscarriage at 12 weeks was a partial molar. It was very tough because at 8 weeks, I had seen the heartbeat, and we thought maybe there was a twin. Then at 12 weeks, we learned there was no heartbeat. We later learned it was a partial molar pregnancy and my precious baby just couldn’t develop properly as a result. It was devastating … I’m now undergoing random hCG drawings to make sure my hCG stays down and nothing from the molar part grows into [cancer]. So not only am I grieving losing my baby — but I’m worried about the possibility of cancer …”
What to expect from your body in your molar pregnancy:
Like an ectopic pregnancy, molar pregnancies are rare, can be life-threatening to the mom, and never end with a living baby. A molar pregnancy happens in less than one percent of pregnancies, and it occurs when either the fertilized egg receives two copies of the dad’s chromosomes or the egg itself does not contain any of the mom’s chromosomes. The placenta doesn’t form properly and instead forms a ball of cysts. If an embryo forms in a partial molar pregnancy, he or she cannot grow properly.
You can have a partial molar pregnancy or a complete molar pregnancy. A partial molar pregnancy means there is some placental tissue and your baby’s body has formed, but simply cannot grow as he or she should. In a complete molar pregnancy, the placental tissue is abnormal and full of cysts, and your baby has not developed from the fertilized egg.
What you may experience with a molar pregnancy:
Nausea. You may experience severe nausea or vomiting, more than you would expect in the first trimester.
Vaginal spotting or bleeding. It is common to have slight spotting (spots of pink or dark brown blood on underwear or when wiping) or full bleeding during your first trimester with a molar pregnancy.
Pregnancy symptoms. Because the placenta has developed, even if abnormally, it produces hCG which will cause you to feel as though you are pregnant just as you would with a normal pregnancy.
A grape-like cyst that comes from your vagina. These are clear, fluid-filled cysts. Passing these are a very good indication that you have a molar pregnancy, and need to be seen by your doctor.
Rare symptoms. These include preeclampsia before the 20th week, a newly developed thyroid disorder, and a persistent cough with or without blood [source].
D&C. Your doctor will perform a dilation and curettage, or a D&C[See the section on first trimester miscarriage for a full explanation on what to expect from your D&C. This is because the pregnancy has turned into a tumor. It is important for your provider to get all of the tissue they can. In some cases, about 20 percent of complete molar pregnancies, the microscopic placental cell will travel to other organs like cancer [source].
“I was hysterical going into surgery. Just terrified. The staff wheeled me into the operating room. I cried and cried. There was one male. The anesthesiologist. He had the biggest heart. As I was sobbing, he leaned in towards me and whispered to me that I would be ok. He gently wiped my tears and held my hand as I was put to sleep. His face was the last thing I remember before falling asleep. That act of compassion and kindness will always be remembered.”
Blood tests. For one year following your D&C, your doctor will provide a series of blood tests to monitor the rise or fall of your hCG. A rising hCG could indicate that microscopic cells from your pregnancy had remained and continued to grow. In rare cases, this could lead to cancer. It is imperative that you complete all the blood work your doctor asks of you.
Prevention of pregnancy for one year. Because a rising hCG level could indicate that your molar pregnancy was growing again, potentially putting you at risk for cancer, it is important you do not become pregnant. If you do, your doctor will not know whether you need chemo with a rising hCG, or if you are just having a healthy pregnancy. Your doctor will advise you on the best birth control options for you during this year. I know that this is not what you want to hear at this moment, and I wish you didn’t have this added stress and disappointment. Try to bear in mind that in order to have the best chance of having a subsequent baby, you need to do all you can to stay healthy.
According to Ashley Hill, MD, “follow-up usually consists of a baseline chest x-ray, review of the pathology specimen, physical examination of the vagina and uterus every two weeks until the uterus returns to normal then every three months for a year, contraception like the pill or shot with no attempt to become pregnant for one year, and, most importantly, weekly hCG blood levels until zero then every month for a year.”[source]
When to call your doctor:
Call your doctor if you have any signs of infection or fever, if your pregnancy symptoms are increasing despite having a D&C, or if you have a persistent cough with or without blood. Call if you are passing clots larger than golf balls, or are bleeding more than one pad an hour for four hours, or for any other reason your provider has mentioned in your care instructions.
How long you may experience symptoms:
You may experience bleeding for up to 10 days following your D&C. [source] Your pregnancy symptoms should decrease as your hCG levels go down (which will be closely monitored by your OB/midwife.)
Ask your doctor:
- What kind of follow-up plan they recommend, and how often you will need to have your hCG checked.
- What the possible outcomes of a molar pregnancy are, and how each would be treated.
- What kind of complications you may experience from the D&C, and when you need to either call or come in following the procedure.
- What kind of tests they will run on your baby or placenta, and if you can find out the baby’s gender.
- How long they recommend waiting to get pregnant again, and what kind of birth control options are best for you.
- If you can take home your baby for burial if you would like.
- If you have any physical constraints, like having sex, lifting heavy objects, exercising, going to work, etc.
- For a doctor’s note to excuse you from work or school.
How you can prepare:
Have a support person go with you to your exams, ultrasounds, and D&C procedure. Since you’ll be sedated during the D&C, you will need someone who can drive you. You will likely not be advised to drive for at least 12 hours following your procedure.
Have someone bring snacks to keep your energy up and good books or movies. You’ll be going into the doctor’s often, and it may be helpful to have books or magazines to distract you while you are in the office.
Have plenty of heavy-duty pads, not tampons, on hand.
Wear comfortable clothing, and shirts that have easy access for blood draws at your appointments.
Don’t be afraid to ask for help with your house, childcare, or errands as you are going through this time. Take as much time off as your job will allow and you feel comfortable with.
Tips for postpartum care:
Be patient. You will likely experience fatigue for many weeks. You’ll have lots of upcoming appointments and tests, and it will take some time to determine if you need further treatment. As hard as it is to go without answers, try to take it one day, one moment at a time.
Navigate your triggers. For your hCG monitoring, consider asking if you can have your blood drawn at a lab separate from our doctor’s office so you don’t have to face the grief triggers of seeing other pregnant women in the office.
Follow all instructions from your doctor. Your doctor knows your treatment plan best. Be sure to stay in contact with them, follow their instructions, and don’t hesitate to let them know if you have any questions.
Surround yourself with support. You will likely feel “off” physically for several weeks. Ask your loved ones to fill in the gaps where you need help. Ask your partner or comforting friends to come to your appointments.
Give yourself time to process. As Molly said above, finding out you are going to lose your precious baby — and are at increased risk for cancer — is like being hit with a double whammy. There is no rush to work through the emotions of not only your loss but also your new physical reality. Journaling, support groups, and counseling can be helpful tools during this time.