I apologize in advance for the length of this post, but I know the detailed posts I’ve read here have been very helpful to me, so I want to share my experience.
My husband and I had been trying for just over 2 years when we finally got that much anticipated positive pregnancy test— truly the best day of our lives thus far! We conceived on our 8th round of fertility treatment (3 months of Clomid, 4 IUIs with Letrozole and Pregnyl, and our first hybrid IUI with Letrozole, Follistim, and Pregnyl). What I didn’t know (because unfortunately the education provided to females around women’s health is pathetic) is that I wouldn’t be able to even see a doctor until at least 8 weeks into the pregnancy. I was beyond frustrated my fertility clinic said “we don’t do early ultrasounds anymore,” because this entire situation may have been avoided..
We rearranged our work schedules to accommodate my OB practice’s jam packed schedule for our first appointment at 8.5 weeks. The scheduler insisted my husband should be at the first appointment. To our disappointment, the doctor basically took 10 minutes with us and said “oh your first pregnancy.. You haven’t had an ultrasound yet? Just don’t eat cold cuts..all looks good. You’re good to go. We’ll see you back for your 12 week appointment!” A huge waste of time. The one helpful thing she did was order us an early ultrasound by saying I had “spotting” although I had no signs of spotting and continued to have pregnancy symptoms throughout the 9 weeks.
We scheduled the ultrasound one week from that day— 9.5 weeks pregnant. Going into that appointment, we were beyond thrilled to see our little “cherry” on the screen for the first time. After an abdominal ultrasound, the tech sounded concerned and said “we need to do a transvaginal because I can’t find anything.” My heart immediately started racing, and my husband was sitting behind me completely silent. The silent moments that followed as the tech searched and searched for a baby in the gestational sac were heartbreaking. We were both legitimately numb when the doctor came in to say there was no baby at 9.5 weeks.
After absolutely no guidance from our doctors, my husband called about 12 times the following day to understand next steps. They said “you can take misoprostol if you want to induce the miscarriage but it’s up to you.” No further detail on what to expect. After speaking with another doctor in my practice she said “the instructions the other doctor gave on the script say take orally but you actually need to take vaginally.” Glad I asked for another opinion.. so ridiculous! We were beyond the point of frustration for the lack of empathy or protocol for a blighted ovum/miscarriage and feeling completely alone. We decided on our own two days after the horrible news to take the Misoprostol to hopefully get the physical part over with. I took 800mg vaginally at 6:30pm, woke up cramping around 1:00am, and didn’t start bleeding until about 8:00am. I passed what I thought was a large amount of tissue in the shower, and after that just had light bleeding for the next week. Thanksgiving night I woke up at 11:30pm in the most pain I’ve ever been in. I laid on my bathroom floor for at least an hour holding back vomit from the pain. I passed a lot more tissue and bled profusely. The following 3 days, I passed a lot more tissue and blood. It got to the point where I questioned if I was hemorrhaging, but my doctor messaged me back saying if I wasn’t light headed then I was okay. I finally was ordered an hcg blood draw which I had done yesterday. My hcg levels are still 5,608. I am terrified the next step will be to have a D&C, and that’s the only piece of advice my fertility doctor has given us through all of this..“try to avoid a D&C, if possible” to avoid further infertility issues.
I am diagnosed with “unexplained infertility” which is sometimes even more frustrating than knowing something is wrong so we can fix it, but we have kept our faith and understand people go through MUCH much worse. We are thankful our situation is still hopeful and know our only choice is to stay positive.
We are praying we can somehow conceive our rainbow baby naturally after this. Miscarriage has an unspoken stigma around it that forces people to feel alone and confused. We feel as if we’ve been provided no guidance, and there have been many days over the past 2 weeks where I have been terrified for my own future health because of the unknown. I am thankful for communities like this in which people can share their raw emotions and honest experiences. We are also extremely lucky to have an amazing support system made up of people who truly care about us and want to help. I am Praying for everyone here, and never wishing this gut wrenching experience on anyone else.
Re: Infertility, Blighted Ovum, Misoprostol
I am updating this post just to let everyone know what I have been through over the last month and half. Ultimately, I hope I can prevent at least one person who reads this from going through what I had to. As a woman, you MUST advocate for yourself, do your own research, and know that it is your right to ask as many questions as you need to. That’s why the doctors we pay thousands and thousands of dollars to have their jobs!
The night of hosting 20 of our family members for Thanksgiving— exactly 7 days after I took the 800mg Misoprostol/Cytotec to induce the miscarriage— I woke up in the middle of the night with extremely horrible abdominal/uterine pain. I hadn’t had any unusual symptoms since 6 days prior— the day after I took the medication— other than some light/medium bleeding. That being said, the pain I experienced that night was obviously not expected whatsoever. I laid on the bathroom floor that night for about two hours in the most severe pain I've ever been in. My husband felt helpless as there was really nothing that seemed to help me. I did pass what I thought was a large amount of tissue, so the next morning I messaged my doctor and let her know of the symptoms and the strange timing. She ordered me my first hCG blood test since the miscarriage— it came back at 5,600. I had some more bleeding throughout the next few days, and I also noticed a different smelling odor/ discharge. I messaged my doctor once again letting her know of this new symptom and told her I thought something wasn't right. My doctor responded by saying we should simply continue to testing my hCG level weekly to make sure it was going down. Unfortunately, my doctor did not order an hCG test the week of the ultrasound showing my blighted ovum, so there was no baseline to know if my levels were decreasing appropriately. This should have been our first sign of the need for my husband and I for advocate for ourselves since our doctors did not lead us through this experience with any guidance or any sense of what was normal/what was not. Not even a simple brochure or informational sheet was provided to us after we found out we had to induce our miscarriage. At this point, we were feeling really frustrated, alone, and lost.
I received my second hCG result which was 3,500– it seemed high to me being 3 weeks after I took the medication, but again, there was no baseline so really no way to know what this result meant. In the midst of this, my husband tore his Achilles’ tendon and had to have emergency surgery, so I was on my own dealing with this while also helping care for him.
After a few more days of really feeling that something was wrong, I messaged the doctor again and a nurse finally responded saying I needed to come in that day for a potential infection (which I thought may be the problem all along). I went into the office by myself that day and had to see the first available OBGYN in my practice (not my usual OBGYN). The new OBGYN prescribed me doxycycline as a preventative measure. She also decided to do an internal exam where she saw tissue in my cervix which she tried to remove. When she did so, I immediately started gushing blood. There was blood all over the doctor, the table, and the floor. The doctor called the emergency room to get me in for an emergency ultrasound but said it would take about 5 to 6 hours, so I should just get dressed and go home. In the middle of our conversation, I excused myself and ran to the bathroom. I passed the most amount of tissue I had yet. I’m not sure what birthing a placenta is like, but it had to be similar to this experience. The doctor knocked on the door and handed me a few pads and told me to head home. I had basically hemorrhaged in the office that day and continued to completely bleed through 3 large pads within about 40 minutes on my drive home. The experience I had in the office that day was extremely traumatic— the doctor and nurse seemed so unprepared and unsure of what to do. They gave me no advice. I probably should not have driven home as I was extremely lightheaded and feeling unwell. Again, my husband and I began to do our own research and realized the symptoms I was in the midst of going through are typically considered signs of hemorrhaging and requires going to the emergency room. However, the doctor I saw that day did not seem very concerned, so I stayed home and went to bed that night with my husband hoping everything would be okay. Since I couldn’t get in for an ultrasound that night, I was told to schedule one the next day. I was told I would be unable to get in for an ultrasound until the following week. After telling my doctor this, she finally called to get me in the next day— again, not sure why the doctor’s office calling to schedule an ultrasound was not the process in the first place for someone going through the physical and mental trauma of what I went through. The ultrasound results said that there was still tissue in my uterus. I was told I had a risk of going into septic shock since I had remaining placental tissue inside my body almost a month after my miscarriage, so they obviously wanted to remove it ASAP. My doctor suggested I take additional round of 800 mg of misoprostol vaginally. I did so that night, but I was very afraid that continued bleeding would lead me to need to go to the emergency room since I had lost so much blood the day before. I passed some tissue following the medication, but it was nowhere near what I had passed prior.
The following week, I had ironically had a fertility appointment that had been scheduled months prior to any of this happening. Thank God for my fertility Doctor who is an Empathetic, knowledgeable, amazing doctor. Unfortunately, there seems to be absolutely no coordination of care between gynecologists and fertility doctors. However, she had taken the time to read my chart and understand everything I've been through in the last month, so she had offered some advice but noted she did not want to intervene in care with my gynecology practice. She did, however, explain why a D&C is not recommended for fertility patients. She has seen numerous patients who have had extreme scarring from D&C’s that has led them to numerous surgeries and hormone therapy to reduce the scarring for the ability to get pregnant. I just so happened to have a follow up ultrasound that same afternoon to see if the medication had solved the issue. The results showed there was STILL a 1 cm x 2 cm piece of tissue remaining in my cervix. The gynecologist who had seen me in the office that week prior called me and recommended a D&C. Luckily, I had met with my fertility doctor that morning to know that that was an unnecessary procedure for such a small piece of tissue. I explained this to the gynecologist, and she said "There’s another procedure called an MVA or something.. I can't even remember what it stands for, but it is an option. I don't think we even have the equipment to do it in the office though." I was apalled by this answer and felt so helpless and lost. I reached out to my usual OB/GYN in the same practice, and thankfully she stepped in to take over my care. She immediately called me to tell me to come into the emergency room the next day in which she could can do a manual vacuum aspiration (MVA) procedure. She was familiar with the procedure, so it made me feel much better that I was in good hands. During this procedure, I was not put to sleep, but I was administered pain medication via an IV. The procedure in total probably lasted about 15 minutes. It was nowhere near as painful as the cramps and pain I had experienced a few weeks prior.
Overall, my missed miscarriage turned into an incomplete miscarriage after IUI did not have to turn out this way. My husband and I now know to demand the best care. I will refuse to accept an early ultrasound as not being an option next time. I pray we will never have to go through another miscarriage, but for anyone who is reading this who feels uncertain or unsure, please please advocate for yourself to see your care providers because your health is the most important thing!