Molar pregnancies are unviable pregnancies with rare genetic problems that occur at – or even before – conception. There are two types of molar pregnancy: Complete and partial. Both types involve a large placenta containing cells that multiply quickly and have the potential to spread to other parts of the body or regrow if they are not completely irradicated
Complete molar pregnancies are even more rare than partial molar pregnancies. There is little information online regarding complete molar prregnancies because they are so uncommon.
If you are experiencing a complete molar pregnancy, you are probably feeling very shocked and confused, searching for answers that don’t seem to exist. You probably feel totally alone because you likely have never met another woman who has had a complete molar pregnancy. You may not have even heard of it before.
But you are not alone. There are indeed other women who have gone through what you are going through. I am one of them. This is my complete molar pregnancy story …
The Seemingly Normal Pregnancy
I was 15 1/2 weeks pregnant and hadn’t slept much in over a week. My toddler was not sleeping well due to her last molar making it’s entrance into her mouth. And besides that, I had not been sleeping well my whole pregnancy due to the hormones.
As a matter of fact, this pregnancy had been kind of rough. Besides the frequent inability to sleep, the level of exhaustion I experienced during the second half of the first trimester was almost unbearable at times. I had also had back issues from early on along with a myriad of other pregnancy symptoms that I never had or had to a much lesser extent with my daughter.
Overall, though, I was comforted that all the pregnancy symptoms should mean I had a healthy baby on the way. We had decided to forego ultrasounds this time around and go with as little intervention as possible throughout pregnancy and birth, so the symptoms were my only gauge that things were progressing normally.
Read my research into the safety of ultrasounds here.
Although my pregnancy and natural hospital birth with my daughter had been wonderful experiences, there were still some interventions we had with her that we later wished we had not done (more on that in this post).
And thanks to my long, frustrating journey of waiting to conceive our second child, I had been forced to learn to let go and be patient when it came to pregnancy. So I felt completely relaxed with this pregnancy and had no desire for any ultrasounds.
A part of me was also afraid of having an ultrasound only to find out something was wrong. I didn’t want to find out on a scan that my baby wasn’t going to survive like I did with my first pregnancy. I prefered to find out when my body did.
And there didn’t seem to be any issues with this pregnancy. Everything was progressing like it should and I was pretty confident that things were going well.
I was pleased to discover at 11 1/2 weeks that I could feel a little bump emerging while laying on my back with a full bladder. At 14 weeks, right on cue, I began having more intense round ligament pain. And by the time of that sleepless morning at 15 1/2 weeks, a lot of my exhaustion and morning sickness had dissipated.
The First Sign of Trouble
During the early morning hours of that sleepless night with my teething daughter, the first sign of trouble appeared. I left my tired daughter and husband in front of the TV to use the bathroom and was disturbed to see some slightly brownsih blood on the toilet paper.
I was concerned, but I didn’t freak out like I had when I had minor bleeding at 10 weeks pregnant with my daughter. At this point in the pregnancy game, I had talked to enough women, read enough stories and done enough research to know that bleeding (sometimes even heavy bleeding) in a healthy pregnancy is not uncommon.
Find out what other scary pregnancy moments might be totally normal here.
I told my husband about the bleeding and we agreed there would be nothing that could be prevented by going to ER. So we decided to wait and see if I had any more bleeding or if I began to have cramping and call my midwife the next day since it was the weekend.
Besides my semi-relaxed state of mind about the bleeding, I also did not like the idea of seeing a strange ER doctor I didn’t know if I could trust. I have so much respect for my midwife and the doctor she works with, and I trust them both with my life – and the lives of my unborn children.
In the event something might be wrong with this pregnancy, the thought of being advised by a doctor I didn’t know from Adam didn’t set well with me. So I wanted to wait and consult with my own OB provider.
Eventually, I was able to nurse my daughter back to sleep and I fell asleep with her. I woke up a couple of hours later to the feeling of blood gushing out of me. With my daughter still nursing and sleeping, I was unable to get up, so I just laid there, blood spilling from my body, salt water spilling from my eyes.
I’m losing the baby.
But no. I convinced myself things might still be fine. My sister had copious bleeding – large clots and all – with two of her healthy pregnancies, so there was hope. When I went to the bathroom to clean myself up, I was relieved to not see anything resembling fetal tissue or clumps amidst the blood.
Almost as quickly as the bleeding had started, it ceased and I never bled again during the course of that Sunday.
My emotions were on a rollercoaster that day. Sometimes I thought everything was probably still fine since I wasn’t having any cramping or any other concerning symptoms and the bleeding had stopped.
But at some point in the afternoon, I began to believe that I was miscarrying. My husband took my daughter out for a daddy-daughter date, and I used my rare hour of privacy to mourn and grieve for the baby that was probably dying or had already died.
But by evening, in light of the fact that I had not had any more bleeding or any cramping at all, as well as the fact that I was pretty sure I was still feeling the baby move, I did a 180 and decided once again that everything was fine.
The next morning I called my midwife’s office and could not get through. I eventually discovered they were closed for Martin Luther King Day and left a message with their answering service that they would receive the following day.
My husband was in agreement with me that there was no need to seek emergency care, and we both began to relax more and more as time went on without further incident.
The next day, Tuesday, when I did not hear back from my midwife’s office by noon, I left another message which was finally returned at 3pm. During that call, I was scheduled for an ultrasound and appointment with the midwife for Thursday of that week.
By the time Thursday came around, with no further bleeding or any concerning symptoms whatsoever, I was feeling pretty confident that everything was probably fine.
The Fateful Ultrasound
My husband picked me up on his way home from work and we went to the appointment together while my parents (who were staying with us at the time) watched our daughter.
On the way to the appointment, my husband asked me if I was worried. I told him I was not concerned about anything specific being wrong, but it’s always hard not to be at least a little nervous before an ultrasound.
When we finally arrived and got into the ultrasound room, I eagerly watched the screen as the ultrasound tech began to move the wand over my belly.
My husband and I hadn’t planned on finding out the gender. But since we were having this ultrasound at 16 weeks, we were excited about possibly finding out what we were having. In general, we were just excited to get to see our little baby and show pictures to our daughter later.
But as I watched the screen, I didn’t see a baby. I assumed the tech hadn’t found the right spot yet. But she quickly obliterated that assumption.
“This is your uterus,” she said without a trace of doubt or confusion. “This is where the baby is supposed to be …”
Supposed to be?
“… and I’m not seeing a baby.”
No … This is not happening!
But I knew she was right. My husband and I silently watched the screen in shock, both trying desperately to make out the form of a baby every time the tech moved the wand. But all I could see was a flurry of white with no particular shapes in it.
“They won’t let me tell you anything else,” she continued. “The midwife will look at these and will talk to you when you get upstairs.”
I silently nodded, unable to speak for the shock and grief thickly coating my throat. As we continued to watch the screen, waiting for the ultrasound to be over, I refused to give into the sobs rising in my chest for fear that I would shake too much for the tech to be able to complete the ultrasound.
Desperate for answers to the confusion swelling inside of us, my husband and I both continued to search for a baby as the tech scanned my uterus and ovaries, taking measurments and pictures.
Finally, the ultrasound was over.
The Unbelievable Diagnosis
The wait to see the midwife was nearly unbearable. In disbelief I reminded my husband that even he had felt my firm baby bump. I recounted all of my pregnancy symptoms that were perfectly following the normal timeline. We questioned over and over and over in the course of that twenty minute wait how in the world it was possible that there was no baby.
I have never been so relieved to see my midwife as I was the moment she stepped into the exam room that day.
“How are you doing?” she asked with compassion in her kind voice.
“I don’t know …” was my confused response. “We’re just so confused and trying to figure out what’s going on.”
And then she began to explain what was happening and unloaded bombshell after bombshell on us.
“You are having a molar pregnancy … the sperm fertilized an empty egg … no, there was never a baby … you have an 11x10x5 cm mass of random genetic tissue growing in your uterus … although it is not cancer, it grows similar to cancer … you are at an increased risk of uterine cancer … you have a higher chance of having another molar pregnancy … we have to do a D&C immediately … you might lose a lot of blood and need a transfusion … you’ll have to be monitored for a while to make sure it doesn’t grow back … you won’t be able to get pregnant for six months to a year to reduce the chances of it growing back.”
I sobbed in between asking questions; my husband hugged me and asked his own questions. Eventually, we left the office to go somewhere to talk before going home to my parents and our daughter.
The shock and confusion we continued to feel and discuss were surreal. We couldn’t make sense of what had happened.
Purposefully waiting until it was my daughter’s bedtime, we returned home to deliver the news to my parents.
That night, I was pretty scared about the surgery I had to look forward to early the next morning that I had had no mental preparation for. But, as was normal for me at this point in the pregnancy, I was only able to sleep three hours and had plenty of time to process and prepare throughout the night.
By the next morning, I was still nervous but I was no longer scared. My predominant feeling was that I just didn’t want to be doing this. This wasn’t supposed to be happening.
Overall, the surgery went very well and I had no complications other than a very painful failed first attempt to put in an IV. That was slightly traumatic and a sharp physical reminder of the emotional pain that would soon set in over this loss.
The first memory I have after the surgery is waking up in a large recovery room with several other patients and a nurse attending me and a man next to me. As I struggled to physically wake up through the anesthesia, I was surprised at how aware I was of exactly where I was and what I was there for.
I’m not pregnant anymore, is the first thought I remember having. And then I cried.
I was relieved that the non-human mass that had been growing in my womb was gone. Once I had found out the bundle I carried inside me was never a life, I was eager to have it as far away from me as possible.
But that doesn’t mean there wasn’t still grief over losing what I thought I had. Grief over realizing I would no longer be taking weekly bump pictures, reading with my daughter about what size baby was each week, or experiencing the exciting changes that come with expecting a little one.
The doctor who performed the surgery told my husband she was very confident she had been able to remove everything. This was comforting news since it reduced the likelihood that the mole would grow back or that I would need a second D&C.
Recovering from Surgery and Pregnancy
Recovering was pretty uneventful. The day of surgery, I was extremely tired and weak, which was expected. My bleeding was very minimal after leaving the hospital. I had cramping, but it was manageable without any pain medication.
Over the next few days following surgery, my most annoying side effect was a sore, dry, scratchy throat and cruddy cough from being intubated. My energy level returned to what it was before the surgery within about 4 or 5 days and I continued to have only spotting and very mild cramping.
The most significant things that happened during those few days following surgery were the bits of information I learned about molar pregnancies from reading online and joining a molar pregnancy Facebook support group.
I learned that molar pregnancies often lead to other pregnancy complications such as preeclampsia and hyperthyroidism, which can present themselves much earlier than in a typical pregnancy.
I learned that 1 in 5 women who have a complete molar pregnancy will need further treatment due to regrowth. That sounded like an awfully high number to me and had me googling and anxiously waiting to start my weekly blood draws to see how well my hcg numbers would go down and stay down.
I learned that molar pregnancies produce insanely high hcg numbers and that the result can often be intensified pregnancy symptoms.
I learned that moles sometimes grow faster than a baby and can cause larger than expected uterine growth. This can sometimes be a warning sign to the doctor to check on things before a molar pregnancy is discovered.
I learned that there are quite a few differences between partial molar pregnancies and complete molar pregnancies.
Partial molars can grow a normal-appearing baby with a heartbeat during the first trimester, but the baby has too many sets of chromosomes and will usually be miscarried early on. In fact, many women do not know they have a partial molar pregnancy until the baby is examined by pathology following a miscarriage or D&C.
Complete molars are even more rare than partial molars, are more likely to become invasive and need additional treatments, and never involve a fetus at all. A complete molar results from a sperm fertilizing an egg lacking any genetic material and basically developing into an overgrown placenta.
But as much learning as I did in that week, I came up with more questions just about everyday it seemed. It is such a foreign concept to comprehend due to how rare molar pregnancies are.
One week after surgery, I anxiously checked the results of my first post-D&C blood draw. My hcg right before the D&C, at 16 weeks pregnant, was approximately 435,000 (the upper limit of hcg during the peek of production at 12 weeks in a normal pregnancy is 210,000).
I was expecting a large drop that first week since I had just had a large, hcg producing tumor removed. But I was pretty shocked to see my numbers had gone down to 6,900 in a week.
Strangely, it made me a little nervous that it had dropped so significantly so quickly, but I tried to stay positive about it. Only time would tell whether my numbers would continue to go down like they should.
My continuous bleeding/spotting stopped two and a half weeks after my D&C. However, I continued to have random, brief spotting occasionally until my hcg was roughly in the forties or fifties (until about 5 1/2 weeks post D&C).
By the time the regular bleeding stopped, I could see and feel changes in my body which seemed to indicate it was in the process of trying to return to fertility. And it terrified me.
It all felt like a cruel joke. A year ago at this time, I was eagerly awaiting my body’s change to fertility after day-weaning my daughter from breastfeeding. It turned out to be a nine month journey of hormonal upheaval before I became fertile again, and by that time, I was discouraged, hopeless, frustrated and numb about the whole thing.
Then I shockingly got pregnant. Only to discover a few months later I was nourishing a tumor in my womb instead of a baby sibling for my daughter.
And now, here I was, with too many recent scars and too much raw pain to even bare thinking about conceiving again, and my body seemed to be moving right along with its female duties as though it had always been this accommodating.
It seemed as though my body was laughing at me. Torturing me on purpose. Giving me what I wanted only once I was too battled-wounded to want it anymore. I was downright angry with my body and hardly knew how to cope with it.
Trying to Cope
Time went on despite my lack of answers, despite my anger, despite my continuing battle with confusion as I tried to process what had happened.
I discovered that exercising/working out everyday was essential to my emotional and hormonal health. It helped me express my anger in a safe way. It also brought to the surface things I didn’t know I was struggling with each day. And I was always in a better mood after exercising than I was before exercising.
At about 3 weeks post-D&C, I began to realize I was subconsciously pretending nothing had ever happened – I had never been pregnant, had never been diagnosed with a molar pregnancy, had never had surgery to end a persistent pregnancy that held no life.
I guess it was just the only answer that made sense to my subconscious self. It wasn’t possible to have been pregnant a few weeks ago but now no longer be pregnant and not be holding a newborn or mourning the loss of a baby.
That is simply not possible, right? It’s impossible to wrap your head around.
My husband and I were both grateful that we had not lost a baby. We were thankful we had seen nothing (or, as we later realized, a tumor) instead of our child’s lifeless little body on that ultrasound screen.
In that way, my complete molar pregnancy was easier to go through than my miscarriage. And I cannot imagine the trauma for couples who miscarry their babies in the second trimester and must endure delivering a fully formed baby who has passed away.
But in terms of processing what happened, my complete molar pregnancy was more complicated to sort through mentality than my miscarriage.
Read my miscarriage story here.
I had been pregnant, but I was never with child. I lost the pregnancy, but I did not lose a baby. I was no longer expecting a baby, but I wasn’t mourning a death. I was grieving, but I had nothing to commemorate.
How do you even explain something like this to people? Fortunately, I had told very few people outside of our immediate family about the pregnancy. But even the few I had told … I couldn’t bring myself to face the embarrassment and awkwardness of telling them that I was no longer pregnant.
I felt like a gullible idiot. As though it was ridiculous of me to actually believe those positive home pregnancy tests and the hcg bloodwork from my midwife’s office during those early weeks of pregnancy. I knew it was not true. I knew I should not feel embarrassed for having believed I was carrying a child. But I did feel that way.
Over the course of my long journey trying to conceive while breastfeeding, I had had many hopeful pregnancy moments before my complete molar pregnancy. I eventually realized I could not trust my body. At that time, I had told myself I would never again believe I was pregnant until I had a positive pregnancy test.
This time even the positive pregnancy tests had lied to me. Now I was telling myself I would never again believe I was growing a baby until I saw one on an ultrasound.
Processing Feelings About Pregnancy
As the weeks went by, I continued to process the grief little by little. My body seemed to be processing things at a faster rate than I was comfortable with. I was very thankful that I had good hcg drops each week and I certainly didn’t wish for a longer or more complicated recovery.
I frequently read the agonizing stories of the women in my Facebook support group who were enduring the frustration and anxiety of rising hcg numbers and the side-effects of the resulting chemo treatments. I felt so aweful for the exacerbated grief and trials these women had to go through.
But it was hard for me emotionally to move past the physical state of recovery into the state of fertility.
I started my first period since before the pregnancy at 6 1/2 weeks post D&C when my hcg was somewhere in the twenties. It was an unwelcome sign that my body was preparing to be ready for another pregnancy.
Of course, I would not be cleared to try to get pregnant again for a while still, which was a relief to me at this point. My doctor had prescribed a 4-month wait to conceive with continuing blood draws after my hcg reached negative (negative being less than 6 at my lab).
But just knowing my body was in the fertile stage again was both grief-provoking and fear-inducing for me. It was a strange feeling that contrasted intensely with my eagerness to conceive after my miscarriage four years prior. Everything was so different this time.
Read my post on Trying to Conceive After Miscarriage here.
My feelings about pregnancy had been radically altered by my complete molar pregnancy experience. I no longer thought of pregnancy as a joyful occasion of welcoming new life, but rather, a potential disease. A malignant condition until proven otherwise.
Even when it came to other women’s pregnancies, I was mentally cautioning them not to get too excited or tell anyone until they knew for sure if they were actually pregnant with a baby.
I knew I would never again view a positive pregnancy test as confirmation that I had a baby forming in my womb. I would view it as confirmation that there was hcg in my system. But I would not know until having an ultrasound whether it was from a little life or a tumor growing inside my body.
By 9 weeks post-D&C, I had begun to block out the whole experience of my complete molar pregnancy. Thinking about the pregnancy didn’t bring any fond memories like it had after my miscarriage. Every time the pregnancy came to mind, I just felt disgust.
I had no desire to talk about the pregnancy like I had after my miscarriage. I wished I could remove those four months from my life story. In my mind, a miscarried baby’s life should be honored; a tumor deserved no such dignity.
My miscarriage had taught me the value of every single life, no matter how big or how small. Ironically, my complete molar pregnancy taught me the bitter reality that not every conception produces the value of life. I struggled to reconcile my belief in life at conception with the fact that this conception produced a tumor instead of a baby.
I began to wonder if the anger would ever subside. Would I ever be able to forgive my body? Would I ever have peace about trying again for the baby I ached to have?
Although I still do not have all the answers about processing and moving on from a complete molar pregnancy, I do know one thing from past experience: Time and distance from traumatic experiences are healing.
Where I am Now
It has now been 3 months since my D&C. My hcg reached negative at 11 weeks post-D&C. I am extremely grateful that I did not need to have a second D&C or chemo to get my numbers to negative.
I am almost at the end of my weekly blood draws now, which is a huge relief. I will still need to have monthly blood draws for a few more months before being cleared of the risk of regrowth.
Emotionally, a lot of my anger has begun to dissipate now and I primarily feel sad and wounded about my complete molar pregnancy experience. But I know that these feelings will also heal with time.
Right now, my focus is on my own physical, emotional, mental, and spiritual health. And as long as I am progressing in all those areas, I don’t have to be perfectly where I would like to be. I just have to be on my way there.
I wrote my story because I needed to in order to help me process my complete molar pregnancy diagnosis. I am sharing it with you because you probably need to read it to help you process yours.
If you have had a complete molar pregnancy, I am so sorry for your loss. I almost cringe as I say that because I hated it at first when people said that to me. It didn’t feel right to me to be told that when I had not lost a baby.
But I eventually realized what I am going to tell you: You have lost many precious things, even if you never carried a baby in your womb during your complete molar pregnancy.
- You have lost time.
- You have lost the baby you dreamed of having.
- You may have lost your innocence concerning the miracle of conception.
- You may have lost hope for your foreseeable future.
- You may have lost your last chance.
- You may have lost your desire to ever be pregnant again.
- You may have lost faith in your body.
- You may have lost the ability to feel any joy for other pregnant women.
- You may have lost the ability to talk easily about pregnancy or birth or even future children.
If you have had a complete molar pregnancy, I’ll say it again: I’m so sorry for all you’ve lost. Please feel free to email me or share your experience with complete molar pregnancy in the comments below.
One of the best things you can do for your own healing is to connect with other women who have gone through this. Trust me, despite how you may feel right now, you are not alone.
It you are looking for further reading and support regarding your molar pregnancy, visit mymolarpregnancy.com. There is practical info there along with other women’s molar pregnancy stories.
For more of my posts on pregnancy loss, click on the links below:
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