National Infertility Awareness Week is all about just that- awareness. The best way to spread awareness is to share your story. Here is my full story so far:
Trigger Warning- miscarriage details, surgery, embryo loss
My husband and I got married on 10/10/20 and had planned to wait to have kids until after I finished grad school. I was just so excited at the prospect of being a parent, that we started trying a few months before graduation in March 2021 (husband age 29, me 28). I tracked ovulation with test strips and kept a detailed calendar with my cycle, but I found it to be really challenging. I had period lengths from just a couple days to over 20. I had months where the strips said I never ovulated and then another where it said I ovulated twice (which is impossible). We kept on trying nonetheless and I got pregnant mid August of 2021. I had been bleeding very lightly for a few days when my period was due and didn’t think anything of it until my breast started hurting for the first time ever. I took a pregnancy test on Saturday 8/14 and it was positive! I ran to my husband and we were both so overjoyed! It was happening! I had heard that a little blood was normal and nothing to worry about. We went out and got a cake to celebrate and started talking about all the plans we had. How and when we could announce the pregnancy, how to surprise our families, calculating the due date… It was all so exciting!
I called my dr as soon as they opened that Monday because I had no idea what you were supposed to do. They scheduled an appointment for what would have been 8 weeks, but said to come in today for a quick check since I was bleeding. This made me nervous, but I am all about being careful and proactive. We went in and the nurses said everything with “muted excitement.” It was like, “Oh you’re bleeding? This is your first? Congratulations?” I felt this cloud growing over us, but all we could do was wait and see what happened next. The bloodwork came back with an HCG in the mid 50s. Not ideal, but not definitive yet. They called for a repeated HCG 2 days later which happened to be the first day of school. As a third grade teacher, I found a labcorp that opened at 7am so I would be able to get to school early still and prepare to greet my new class. The con to going to labcorp though is you don’t always get your results the same day. So the following day, thankfully after getting home from work, the nurse calls me to tell me my numbers decreased rather than doubled. I remember feeling my stomach drop and starting to retch. I tried to listen to her directions, but all I remember her saying at the end was, “Have a nice day.” I fell into my husband’s arms and cried uncontrollably. I couldn’t tell you for how long. The only thing that brought me back to earth for a moment was when a bird flew into our window like some sort of bad omen. I texted my teammate and principal telling them I was miscarrying and they took care of sub plans and such for the third day of school.
I was simply existing. I don’t remember eating, bathing, talking… I just know I got up and went to work that Monday and tried to focus on that. I was able to fake it until Thursday the 26th when my body began to really miscarry. I had to go to the ER due to the size of the clots and pain. I remember sitting in the waiting room and a nurse was coming around with a vitals cart. An old woman next to us said, “She comes every 2 hours to do this, just like feeding a newborn!” If the pain were not so immense, I would have broke down crying right there. No, I waited to break down crying until they tried to separate my husband from me because 2021 was still the height of Covid protocols. They had a bed rolled next to the bathroom in the hallway for me because there weren’t enough rooms, yet I was unable to sit/stand. I begged the nurse to let him stay because I couldn’t make it to the toilet on my own as these giant “blood-sicles” were ripping out of me. I was extremely faint, not to mention an emotional wreck. All I could think about what whether this clot or that one had my baby inside it and how it was just going to be flushed down the toilet. They kept saying I needed to choose between having this bed or being with my husband. If I wanted to be with him, I needed to go back out to the waiting room chairs. “I’ll be back in 5 minutes to hear your decision,” one nurse said. I was convulsing I was crying so hard. The cruelty of the situation was multiplied by the crassness of the hospital worker. Then the kind nurse that did my initial intake vitals came around and told my husband to sit at the foot of my bed. She closed the curtain and walked away. Thankfully out of site, out of mind prevailed here.
Eventually, I got a room and the ultrasound tech was the first person to attend to me. They wanted to be sure it wasn’t ectopic. Ultrasounds are usually uncomfortable to an extent, but this one was the worst of my life. Imagine your uterus literally ripping apart and then someone jamming a wand up there and poking around for what felt like ages. Only once they were done with that was I offered pain meds. Needless to say, we saw a doctor eventually and he said, “Sorry for your loss, but the good news is we know you can get pregnant! Just try again.” I was sent home and told to only return if the clots got bigger or the pain became unbearable.
The next few months are truly a blur. I remember feeling like a shell of myself. I simply went through the actions of “life” because I had a classroom full of 8-year-olds depending on me and a loving husband at home that had no clue what to do. He didn’t know how to help me or what to say. He didn’t feel the way I did and I felt like my feelings were “wrong.” Maybe this wasn’t a big deal. I was “barely pregnant,” so I shouldn’t feel this much grief and pain. What did I really lose? I just couldn’t make quiet this voice in my head that kept saying, “SOMETHING IS WRONG!” I followed up with my doctor and was told miscarriage is totally normal and doesn’t mean I won’t have a healthy baby the next pregnancy. I’m young and healthy so everything is on my side. I asked for some sort of testing, but was told no because that is only for women who have had 3+ miscarriages. I accepted this answer initially, but decided it wasn’t good enough. It was more than “just a miscarriage.” It was also the irregular cycles, bleeding, and ovulation. It also became an extreme breast pain that never went away. So I became the squeaky wheel that couldn’t be ignored. They agreed to do some basic bloodwork and a saline sonogram. Bloodwork was mostly normal, but the one doctor could not perform the sonogram. She continually tried to pass the catheter through my cervix, but could not get it through. Ouch! I left feeling defeated.
My usual doctor called the next day after hearing what happened with his colleague and offered to come in on his day off to perform the procedure. While he was able to successfully do the saline sonogram, there were complications. As soon as the saline was injected inside, my body cramped up horribly, my blood pressure plummeted, and I went totally pale. I began feeling faint, vomiting, and having diarrhea. It took almost an hour for me to get back to normal. While the sonogram didn’t show anything abnormal, the doctor did another piece of bloodwork that was not in the initial labs and found that my prolactin levels were very high. On the phone the next day, he asked, “Do you ever have nipple discharge?” I honestly said, “I’m not sure” and then I went and lightly squeezed my breast only to find that a milky substance shot out! He recommended we start our journey with a fertility specialist.
So in December of 2021, we met with Shady Grove Fertility and did tons of initial blood work, tests, and appointments. The doctor felt our case wasn’t bad at all and our prospects were great. It seemed I had some issues with ovulation, and then possibly prolactin, though the level was not high when he did his bloodwork. He suggested we do the least invasive option of “Timed Intercourse” or TI. I was nervous, but excited at the prospects of getting pregnant again. My husband was just along for the ride. I had started therapy around this time because I was really struggling with my loss and needed help. My husband just didn’t understand it yet.
Cycle one of TI was a learning curve. The medicine made me feel like garbage. Having a doctor tell you specific times to have intercourse was so NOT fun, and it didn’t work out. The second time around proved better because May 2022 I got pregnant again. My baseline bloodwork appointment wasn’t until Monday the 23rd, but I had all the symptoms before and did a home pregnancy test. It was positive and I wasn’t bleeding! I decided to keep the pregnancy to myself for that weekend. My plan was to get the official good news from the lab work Monday, go and get a balloon or something on the way home, and surprise my husband. Keeping that secret has haunted me with regret ever since because I began bleeding Monday morning. SGF tried to tell me bleeding was normal and that although my numbers were in the 60s and that isn’t great, it is still possible. I got the call with that news while I was teaching at the end of the day and I had to have a colleague take over my class. I immediately felt overwhelming fear. I had to get home and be with my husband. I knew history was repeating itself, but my husband was optimistic. The bleeding wasn’t bad and there was still a chance.
I stayed home for two days crying and having panic attacks during every trip to the bathroom with each wipe. It wasn’t until my blood work 2 days later showed my HCG numbers rose to over 100! I felt relief and a bit of hope! I hadn’t experienced numbers going up before. This gave me enough energy to return to work and proceed with life. I woke up two days later for my next bloodwork appointment to blood. A LOT of blood. I just knew the truth, but had to proceed with the bloodwork and teaching. I got the call during my planning period around 2 pm that the numbers were going back down and that I was miscarrying again. I remember asking the nurse to send me everything in a portal message because I couldn’t “do this” right now. I picked up my class from art and finished out the last hour of the day with absolutely zero patience and came off like a huge bitch. Dismissal came and I went home for Memorial Day weekend and just fell apart.
I refer to the next month or so of my life as going through “power saving mode.” I would just sit and stare… on the couch, at the kitchen table, on a chair in the back yard. I basically just breathed and even that was a challenge. Though I never took action or made plans, I certainly wished more often than I’d like to admit that I had died with my baby. That felt like the only way I’d ever get to be a mother. Somehow, during those zombie days, I still fought and advocated for myself. SGF agreed to do a recurrent pregnancy loss panel. They discovered prolactin was high again so they’d finally treat me for that. They also found elevated levels indicating Antiphospholipid syndrome, or APS, which is a clotting disorder. They said to take baby aspirin daily and we would add and anticoagulant called lovenox to my future cycles. In addition to that, I had had extreme pain in my left wrist since getting pregnant that lasted longer than my baby did. I was diagnosed with de quervain’s tendonitis. This was caused by the hormone levels/ fluctuations during the pregnancy. It could be treated with cortisone shots at this time at least.
Eventually, we started TI again. We did three more cycles and all were unsuccessful. The Lovenox injections were awful resulting in horrible side effects, and even worse bruising. There were times where it looked like I was beat with a baseball bat. It made me feel so depressed to keep getting negative results, and feeling like everything was for nothing. I continued to ask questions though. I continue to have changing and evolving symptoms that led them to believe I could have endometriosis. This made sense because my mom has it too. I was having increased cramps, especially during my period and ovulation. They would become so bad at times that I would vomit, have diarrhea, and even faint, and become unconscious. It was happening on a monthly basis. So during the winter, I had a hysteroscopy which resulted in a polyp being removed, but they did not want to do a laparoscopy to remove endometriosis quite yet. The doctor kept saying the best thing I could do to prevent the endometriosis from getting worse is get pregnant. Of course! Why didn’t I think of that?! So I agreed to move on to IUI. This was the next least invasive option after TI. It was all the same medications, just an added step of insemination. I was willing to give it a shot. We did one and it was unsuccessful and I decided that even though it wasn’t recommended I would pursue endometriosis surgery. I was tired of passing out on the toilet and living in fear of when and where it’s happen next. I had the laparoscopy in April 2023, and they indeed found endometriosis on the outside of my uterus. I felt very validated, but at the same time frustrated that this wasn’t discovered or acknowledged earlier. Needless to say after a very long recovery, we continued with IUI one more time, but it was unsuccessful. At this point, we had to make the difficult decision to move forward with IVF.
I had always said I never wanted to do IVF. It’s a very intimidating, invasive, and scary process and not one I wanted to have to do. It seemed unnatural, and just not right for me, but if the option was between IVF and no baby, I obviously would go with IVF. So during the summer of 2023 we filed for insurance approval and attempted to start a cycle but struggled due to estrogen producing cysts. This delayed the process quite a bit which put a lot of emotional stress on me because I just wanted to get it done during the summer since I’m a teacher. I wanted to get pregnant quickly and just be over with the trying to conceive portion of our journey.
Once we finally were able to start a cycle, it did not go well. I felt more broken than ever. I remember seeing on different Facebook pages and support groups people saying they were getting 10, 20, 30+ eggs during their retrievals. How many did I get? ONE!!! That number is unheard of for someone at my age, 30 years old at the time. Though the egg fertilized, it never became a blastocyst embryo. Once my menstrual cycle started again, we jumped right into another IVF cycle. All the needles and medications and side effects weren’t enough to make me want to take a break. They changed up the protocol a bit with using different medicines and different doses and I was able to get more eggs this time-SIX!!! I was over the moon, excited and happy. Six was not the best number, but it was good enough and certainly better than just one. Of the six only two of them made it into blastocyst embryos, and they were biopsied and then frozen. The biopsies were sent for genetic testing and I got the results two days before my 31st birthday.
It was 8 o’clock in the morning and I was at school getting ready for the day when my doctor called to tell me that both of my embryos were genetically abnormal. They had the wrong number of chromosomes and we’re not compatible with life. The doctor said that this was very surprising news, and totally unexpected for someone my age. These types of results he usually gives to people in their 40s. He said it could be just a fluke. However, we might need to have a serious discussion soon about using donor eggs rather than my own biological eggs. This news almost hit me harder than the news of my miscarriages. This news didn’t just mean those embryos, those babies died. It meant that all future babies might not be possible. I grabbed my phone and a box of tissues and went into the office and close the door. I began uncontrollably, sobbing, and texted the principal to let her know what happened and where I was. She came in and hugged me and held me for minutes. She got someone to cover my class and had my teammates make some plans for my class. They contacted my husband and had him come pick me up. I again entered a stage of numbness. All those hopes and dreams and questions of “when will I be a mother,” turned into questions of “will I ever be a mother?” By this time my husband has gotten a lot better at supporting me and understanding my thoughts and feelings and trauma. He was smart enough not to tell me everything was going to be OK at this point. He just listened. He just sat with me. He just held me.
We met with the doctor before proceeding with another cycle to see if there was anything different we could do. He shared that he believed this protocol was still the best one for me, and that my age would hopefully still be on our side. He said it is bizarre that at 31 all of my embryos, being abnormal and having a low AMH level is strange. He couldn’t explain why it is this way. He said endometriosis could be a factor, but not necessarily. Some things are just unexplained. For our third egg retrieval, we got 4 eggs. Again, only 2 made it to the blastocyst stage. The results were a little different this time. One embryo was still aneuploidy meaning
it was genetically abnormal and not compatible with life. The second embryo, however, was called a” low level mosaic.” This meant that a portion of the cells biopsied were abnormal, but the other portion were genetically normal. This means that this embryo could potentially be compatible with life. Risks would be involved, but it had a chance. We decided to keep it frozen and wait to transfer it until we got more information.
During that time of waiting, I did a lot of research about abnormal embryos and mosaic embryos. It led to us having my husband’s sperm tested again, but using a different method. We learned that he has DNA fragmentation. While this isn’t the root of our problem, it could be a component. This will lead us to use slightly different methods during the fertilization process of IVF. Again, it’s another partial answer, but not a solution.
We took some time off from treatment for the holidays and then wrist surgery to hopefully permanently fix my tendonitis that was caused by my second miscarriage. Endometriosis symptoms have started to return as well. Within the next month, we will start our fourth egg retrieval. Something is telling me that this will also be our last egg retrieval, but I’m not sure why. I feel like I’m getting to the point where I want to be done with this chapter. Whether this retrieval results in a genetically normal, embryo or not, we will transfer an embryo and attempt to get pregnant sometime in June/July. I hope with all of my might that this will work and be our miracle baby. Our double rainbow. The missing part of our family. However, if that is not the case, we are getting closer to excepting our reality. Whether this reality leads us to adoption or fostering a child, we’re not sure yet, but what we do know is that we WILL be parents. I will be a mother to a child that I will love unconditionally for the rest of my life, just as I love those that are in heaven, watching over me cheering me on so they can see their mommy become a mother to a child here on earth. Infertility is an awful battle, but it is one I will fight every day at the chance of achieving my dreams.
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