Infertility Can Be Such a Thief: Hilari’s Battle with Fibroids and Infertility

Prior to starting their family, Hilari had heard about polycystic ovarian syndrome (PCOS) and endometriosis, but she had never heard of the type of infertility she ended up experiencing. No one in her family or her husband’s family had trouble getting pregnant, that they were aware of, and they thought they’d just get married and start their family when the time felt right. Hilari and her husband got married in January 2020, right before everything shut down and their initial plan was to start trying that spring. But, once COVID hit, they reassessed and decided to wait a year given all the uncertainty around their jobs and even what health care would look like. Hilari was 29 years old, turning 30 that summer and thought she and her husband were young and had plenty of time and quickly discovered they were starting a two year battle with infertility they never expected.   

“For the past two and half years, I had been faced with one pivot and plot twist after another…It wasn’t even necessarily a want for a baby but a desire to raise a person with my husband.”

READY TO START OUR FAMILY

“We decided we would start trying to grow our family in 2021. I downloaded an app to help monitor my cycle, determine my fertile window, and my peak day and I blindly followed what the app said. Once I started ovulation testing, I learned that while I have a 28-day cycle, I don’t ovulate in the middle of cycle. After trying for four or five months with no success, I started to get antsy and it didn’t help that I work in early childhood education, giving tours and enrolling families, and am inundated with kids all day. Then I’d get on social media and it felt like I saw one baby announcement after another.

We hit the six-month mark of trying, and during this time I was learning about my cycle, taking my basal body temperature every morning, and trying to do all the ‘right things’ and still nothing was happening. I was starting to get discouraged, and my husband remained incredibly optimistic for the two of us. By November 2021, I was distraught and felt that something just wasn’t right but when I tried to set up a consultation with a specialist at University of Pennsylvania (Penn) they were resolute in me trying naturally for the full year before making an appointment.  

At this point, I was 31 years old, and I didn’t want to keep trying the same thing every month, hoping for a different result, only to be disappointed when it continued to not work. I didn’t understand why we had to wait four additional months just to check a box off the clinic’s page of statistics.”

DISCOVERING YOUR UTERUS IS FILLED WITH FIBROIDS

“By March 2022, we finally got into the clinic and started getting tests done. My husband’s sperm analysis came back fine, and my bloodwork was normal. Then we did an ultrasound and they saw that my fallopian tubes were open, my ovarian reserve, and follicle count were great, but my uterus was full of fibroids. There were fibroids in the walls, lining and cavity of my uterus and there’s a chance that while I never had a positive pregnancy test, I very well could have been pregnant several times prior to that ultrasound. However, given the number of fibroids in my uterus, my body couldn’t hold a pregnancy and likely pushed it out when I had my cycle regularly.

I had gone to the ultrasound appointment alone and learned about all of this with the ultrasound wand still actively being used inside of me and I was absolutely devastated. Discovering the fibroids put us on a treatment path that I was thankful for. However, knowing nothing about fibroids prior to this and hearing they were preventing any pregnancy from having even the opportunity to start was incredibly difficult to process and understand in that moment by myself.

Once we discovered the fibroids, I wanted to know everything I could about them. I wanted to know how old they were and whether we could biopsy them once they were removed. I wanted to know whether us trying to get pregnant sooner would have helped us or had they always been there? My fibroids were the size of blueberries and raspberries but there were so many of them filling my uterine cavity. They didn’t change my physical appearance, but the doctor did think it was likely the cause for my painful cycles because each month my body was trying to expel the fibroids attached to that organ. Obviously, it can’t expel the fibroids on its own and so my body was working against nature.”

“There were fibroids in the walls, lining and cavity of my uterus…and given the number of fibroids in my uterus, my body couldn’t hold a pregnancy and likely pushed it out.”

FIBROIDS CHANGED MY PREGNANCY AND DELIVERY JOURNEY

“My doctor scheduled me for a consultation with a surgeon who specialized in fibroid treatment and removal about five weeks after the ultrasound. In the medical world, that is no time at all but to me it was almost two cycles we were just throwing down the drain. When we did have our consultation, the surgeon knew exactly how he wanted to treat me and proposed two different procedures that he could do robotically. He suggested a laparoscopic myomectomy and a hysteroscopy, and he said that if I was his daughter, he’d recommend doing both to cover all our bases and not risk having to go back in to follow up with a second procedure.

I had always been nervous about being pregnant even though it was something I wanted. It wasn’t even necessarily a want for a baby but a desire to raise a person with my husband and chosen partner. The pregnancy part of having a child was never glamorous in my mind but when it happened, I had it in my head that I wanted a vaginal delivery. But as my surgeon was explaining the before, during, and after process of having these procedures done to remove my fibroids, he described how it would be as though my body had been through a C-section. They would be making incisions, cutting things out, and messing with my uterus so when we did conceive, I would be forced to now have C-section deliveries.

I immediately started crying in the office. It was overwhelming to first learn that I was going to have to go through surgery to even have a chance of getting pregnant and at the same time the way I imagined delivering our child(ren) was also being taken away. The direction of our pregnancy and delivery journey was changing so much and completely out of my control and out of my realm of acceptance.”

MYOMECTOMY AND HYSTEROSCOPY: REMOVING MY FIBROIDS

“Two and half weeks after our initial consultation with the surgeon, they scheduled me for the myomectomy and hysteroscopy. I never resisted the idea of having the surgery. There was something in my body that shouldn’t be, and we had a surgeon who seemed awesome at his job and could take care of getting the fibroids out of my body.

The surgery wasn’t a wonderful experience but also wasn’t as bad as I anticipated. There was a three-month recovery and when I had a follow-up ultrasound to ensure everything was clear, they found a fibroid remnant from my largest fibroid in the spot where an embryo would typically implant. I was shocked! How could there still be something there after they cut parts of my uterus and shaved and suctioned everything out. What most likely happened was when my cycle returned, there was a root of a fibroid in my uterine wall left behind and my muscle pushed it into the uterine cavity.

In September 2022, I went back in for a second hysteroscopy and that was a breeze compared to the first surgery. I felt like I could have gone to work right after, but I also felt like we were losing so much time, as we were going on two years of trying fruitlessly to get pregnant. Luckily the recovery time was shorter after the second hysteroscopy and we had to wait until my cycle returned, have a cycle, and then we were cleared to start trying on our own.”

“I didn’t want to push it too far to the point that we lost sight of why we wanted to grow our family in the first place.”

FIBROIDS REMOVED: CAN WE MAKE A BABY?

“Our surgeon thought there was no reason to suspect we wouldn’t be able to successfully conceive on our own now that the fibroids were removed. However, he still wanted me to schedule a consultation with the clinic, who immediately wanted to start me on Clomid and medicated cycles.

That didn’t feel right to me. My body had never been in a condition where it could naturally hold a pregnancy because of my fibroids and after seven months of surgeries and recovery, I didn’t want to jump into a new treatment plan until we saw if this journey that we had just been on worked.

I’m so glad we gave my body a chance because once my cycle returned, it was the following cycle when we conceived at the beginning of December 2022.”

NOT LOSING SIGHT ON WHY WE WANTED TO GROW OUR FAMILY

“I started seeing an infertility focused therapist shortly after my third procedure and have been seeing her for about a year now. I started seeing her because I was struggling to appreciate all that I had gone through and was really feeling like it was all too much. I was stuck in a cyclical battle of questioning what I was doing, if we were doing the right thing, and if we continue to try naturally. There was always the next dark cloud looming, defined by a ‘what if’, and made me feel like I never knew what the next right decision should be.  

I brought up my feelings to my husband and told him I just knew that I couldn’t go through this infertility journey for years and years. I wanted to make sure I didn’t lose sight of why we were doing the surgeries and going through all of this. I didn’t want my sole purpose to be proof to myself and others that I could get pregnant and have a baby because when we started this journey, I was not closed off or indifferent to other methods of growing our family.  

I’d occasionally ask my husband to please tell me if I was getting too caught up in the whole process or if he saw my mental health suffering and I wasn’t myself. He knows me best and I needed him to help keep me grounded. I didn’t want to push it too far to the point that we lost sight of why we wanted to grow our family in the first place. My husband is not my sperm donor, he is my partner.”

INDIFFERENT ABOUT FINALLY GETTING PREGNANT

“I was constantly processing all these thoughts and questions while continuously going to work each day, holding babies, being around children and seeing the other side of what my husband and I were tirelessly working toward. I kept seeing my therapist about three times a month to take care of myself mentally and emotionally and she helped normalize my feelings of indifference and recognize that they are common and normal.

After going through infertility, I had reached a crossroads and faced questions around what direction to go and what to do and I had concluded that I was ready to stop trying and needed a break. It was December and we were heading into a new year and thought my husband and I could refresh, rebalance, and recenter. I was tapped out and didn’t think I wanted this as much anymore.

I shared these thoughts with my therapist early in the week and that week happened to be a double session week with her. A few days later at our next session, I had found out earlier in the day that I was pregnant, and I was in absolute disbelief. My therapist was the first person I told because my husband worked late that night and my therapist responded with: ‘we have a lot to talk about’. Yes, we did!”

“Connecting with so many people helped me banish the isolating feelings that typically come with infertility…whether you seek it or not, community exists.”

PREGNANCY AFTER TWO YEARS OF INFERTILITY

“When I first called the clinic to tell them I had a positive home pregnancy test, they said they’d see me in six weeks, and it wasn’t until nine weeks and six days we had our first appointment. While waiting for the appointment, I tested morning and night for the first two weeks. Watching the line get darker and stay dark was affirming and assured me that it was okay for right now. Those tests felt like the first pictures I had of our potential future baby coming.

Finally getting in for our first appointment helped make our pregnancy feel very real for me. We ended up having to wait three and half hours for the doctor at that first visit and I was so anxious and sweating, wanting to make sure there was something in my uterus with a strong heartbeat that was not a fibroid. I needed to see and hear from a doctor that everything was okay and looking as it should.

Seeing the little heartbeat flickering on the screen and hearing that I was measuring nine weeks, six days, exactly where they expected, was incredibly affirming. The doctor talked to me about how the rate of miscarriage continued to decline as I got closer to the 12-week mark and discussed how because of my myomectomy, I would likely show sooner than others pregnant for the first time due to my body going through a procedure that was similar to a C-section. With the myomectomy, they inflated me, and I have several incisions going horizontally across my abdomen from the laparoscopic surgery, resulting in alterations to my uterus. But each week that I felt the incremental changes in body, I appreciated those changes and how they reaffirmed that I was pregnant and a little one was growing inside me…not tumors in my uterus.”

INFERTILITY DOESN’T END AFTER A SUCCESSFUL PREGNANCY

“After I had my healthy baby girl, I never stopped bleeding in the expected timeframe. My OBGYN ordered an ultrasound at my six-week appointment to check on my postpartum bleeding and the ultrasound showed a mass. My doctor speculated it was retained product from the delivery of my daughter, likely my placenta, and she scheduled me for a hysteroscopy to take a closer look. Before going in for the procedure, I also signed off on having a manual vacuum aspiration (MVA), D&C and/or D&E to successfully remove whatever was discovered in my uterus.

I was awake for the procedure and received a local anesthetic and watched the screen as the scope navigated the inside of my uterus. It was jarring to be completely honest. The scope showed there was no retained product, but rather a fibroid that my body pushed into my uterine cavity since I gave birth two months prior. This is what had been causing my continual bleeding and obstructing my right fallopian tube, starting to encroach on the left. To remove it, I’ll need to have another hysteroscopic myomectomy to have the fibroid cut out.

All this to say, infertility doesn’t end. Physically, mentally, emotionally, infertility continues to plague us. My husband came back with me at the end of the OBGYN appointment when the doctor explained what she saw, and I held my daughter who was just 8 weeks old, as they fired questions and options at us for future family planning. It was a very vulnerable scenario in every way imaginable: I was still barely covered by a paper sheet from the procedure, still freshly postpartum, and still not able to think past my present with my baby in my arms. But despite all that, I was being instructed to consider having more procedures and getting pregnant again sooner than not.

Our girl feels even more miraculous than ever before, and I am in awe of the timing of having her. I’m also feeling very stuck and unsure of whether to guard and protect this precious experience of raising her solely or if we set our sights towards trying to give her a sibling and all that entails. Both feel negligent in respective ways.”

“Physically, mentally, emotionally, infertility continues to plague us.”

NOTHING GOES ACCORDING TO PLAN DURING INFERTILITY

“My experience with infertility has been incredibly humbling and character building. We started out freshly married, with the mindset of wanting to have a baby and determined to will it to happen. I could control the elements like what I ate and drank, the vitamins I took, and the appointments I made to keep up with my health, all to do the ‘right things’, and still have no control over whether I could get pregnant naturally. I couldn’t control my uterus filling up with fibroids no matter how hard I worked to control things within my own realm.

You must be open to learning and accepting what you can do or what your own journey and process is going to look like when walking your infertility path. There is a constant conversation you must have with yourself and your partner to make sure that with each unknown and twist, your path still feels authentic for you. We had to ask ourselves questions about whether we try something else, press pause for a month, and even if we could make peace with our story being different than we first imagined.

Be humbled in the learning, instead of confident in the knowing.”

YOU DON’T HAVE TO FEEL ALONE ON YOUR INFERTILITY JOURNEY

“Infertility has been stigmatized as being incredibly isolating and once you start your own infertility journey, you are made to feel so alone. I took that idea and decided I didn’t want to feel alone, and I didn’t want other people to feel alone either.

That motivated me to start sharing my story in a way that felt comfortable to me and I would share that we had been struggling and what procedures we were having done. The number of people that reached out to me, thanking me for putting our journey out there, was almost shocking. I had people I had known from middle school and high school who I hadn’t spoken to in years reach out to share they were on their own journey of infertility and were appreciative of my vulnerability because it made them feel not as alone. They found it refreshing to see my story on their Instagram feed and hear my experience and perspective because they were going through IVF for a third time and still weren’t pregnant or were navigating life after a miscarriage.  

Connecting with so many people helped me banish the isolating feelings that typically come with infertility. One connection in particular has been an amazing support for me and started with a girl from high school that I knew but wasn’t close to reaching out to me. She and her husband were on their own journey and were pursuing IVF and her round of IVF coincided with when we were cleared to start trying to conceive on our own. We became mental health buddies and started having weekly check-ins with each other and there was one week where we both had big news to share: we were BOTH pregnant! Her embryo transfer was on December 02, and I know we got pregnant on December 03, each week of our pregnancy we’d congratulate each other, and our babies are just two weeks apart.  

We still text daily and instead of isolating ourselves on our infertility journeys, we acknowledged each other as the lifeline we needed.”    

“Each week that I felt the incremental changes in body, I appreciated those changes and how they reaffirmed that I was pregnant and a little one was growing inside me…not tumors in my uterus.”

FOR THOSE WALKING THE PATH OF INFERTILITY

“I want to help break down the walls of isolation that have previously defined infertility. I know reaching out is not the easiest thing for some people, but it’s imperative that you do because there is community that can help support you.

Whether you seek it or not, community exists and if you’re willing to go through a procedure or treatment, spend the time and energy on getting pregnant and having a baby, you should utilize the resource of community that is readily available to you.

Having to walk the path of infertility is just as people say and it’s the worst club with the best members. I struggled to find people who had fibroids or went through treatments for fibroids and getting to be a small part of the infertility community, share my own experience to help someone else on a similar journey, has truly been such an honor.”

You can follow Hiari and see how she continues to uplift and support others battling infertility on Instagram @hil_oneill. Hilari has found incredible comfort connecting with others during her journey and welcomes anyone to reach out. You’ll find a friend and will be reminded that you are not alone!