Fibroids & Fertility: Navigating Challenges, Exploring Possibilities

Community Member’s Story: Seeking Another Opinion

I had heavy menstrual cycles for as long as I could remember, but 2021 was when it became debilitating. I felt extremely fatigued, had serious hair loss, and often found myself calling out of work. I was bleeding through ultra size tampons AND overnight pads every 2 hours for 6 days straight. I went to my PCP at the time who ordered blood work and found that I was anemic (my Hgb was at 7!). She advised me to see an OB/GYN to address the heavy menstrual cycles which was likely the cause of my anemia.

The first OB/GYN I saw only took an abdominal ultrasound (no transvaginal) and detected a large fibroid in my uterus. With this limited information, his first suggestion was a hysterectomy, which I was utterly devastated to hear because I was only 26 at the time and wanted to have children. Fast forward to 2023, I finally decided to get a 2nd opinion from another OB/GYN who quite literally saved me. He was an expert in minimally invasive gynecologic surgery and was experienced with cases such as mine.

After a transvaginal ultrasound and an MRI, he reassured me that he would be able to remove my 10m fibroid via laparoscopic myomectomy. My surgery lasted 3 hours, I had 4 incisions (3 on belly, 1 inside belly button), and the fibroid was removed via incision in my belly button to minimize any bleeding. I was able to walk within an hour of waking up from surgery and was discharged later that day. My quality of life has dramatically improved and I feel like a better, healthier version of myself. My menstrual cycles have normalized and even shortened in duration. Follow-up appointments with the surgeon have proved the surgery to be a success and my husband and I are hoping to start a family very soon!!

Danielle’s Story: The Journey Continues

I come from a little city in Canada. In 2021, I miscarriaged and this was the first time I found out about fibroids. They presumed the cause of the miscarriage was due to the fibroid. A few months after finding out; we were pregnant again! Over the next 9 months, I had multiple ultrasounds to monitor the baby and the growth of the fibroid.

Many times, due to the size of the fibroid, I would get comments about having twins. I was put out of work early due to pain. The months following the birth of my daughter, and having my first period after 9 months, I was in excruciating pain. Barely able to get up off the couch, and bleeding so heavily that I had to change an overnight pad every 2 hours, and even when also using a tampon. I was referred to have a hysterectomy, because of the fibroids location, doctors say it’s inoperable without fully removing my uterus.

I’m only 30 years old. (In November) I have pain now daily, extending down my legs and barely can have any pressure on my stomach, and that can make playtime with my children difficult. Where I am from, it seems like there aren’t many resources for women with fibroids. The only treatment I’ve got is taking birth control. Which I always have opted out of because it makes me feel really low. I am now waiting to hear back from doctors about surgery and hope to be on the road to recovery soon.

Community Member’s Story: Undeniable Hope

I have always had heavy periods, and was put on birth control when I was 18 to help manage symptoms. My period was pretty normal for a few years, but when I was 22, I started having extremely heavy periods and pain. I remember going to work and laying down in my office doubled over in pain because of my period, and bleeding through my pants daily. I went to my gynecologist and told them that my mom just had a hysterectomy due to fibroids and they luckily did an ultrasound that same day (I’m very lucky to have a great gynecologist!).

They found a large, submucosal fibroid and I was scheduled for a hysteroscopic myomectomy. The reason I chose this surgery was because I knew I eventually wanted kids, but not at that moment. The surgery was successful – I had reduced bleeding and pain, until it started back up when I was 25. I was told that another hysteroscopic myomectomy was the only way to preserve my fertility and reduce symptoms, so I did the surgery. During surgery, they put in a Mirena IUD to thin my lining, with the hopes of reducing the risk of fibroid growth. They found 3 submucosal fibroids at this time.

Like the first time, my symptoms subsided until I started having 3 week long periods, pain, and extremely heavy bleeding. I was put on extra progesterone to help with bleeding, but it ended up thinning my uterine lining too much. I was referred to the fertility clinic to find options that will help with my symptoms while still giving me a chance to conceive, so at 26, I met with my fertility doctor. I was told that another surgery was needed and I would need to start trying to conceive right away.

I had another hysteroscopic myomectomy when I was 27 years old, where they found multiple submucosal fibroids. I was unable to conceive naturally, so we did 4 rounds of IUI, all were unsuccessful. I then advocated to get an HSG and they found my whole uterus was scarred with Ashermans Syndrome due to my repeat myomectomies and without using an intrauterine balloon to prevent scarring. At 28, I got a hysteroscopy to take out the scar tissue, but an HSG revealed it was still there due to the intrauterine balloon slipping. I had no idea, but a symptom of Ashermans is reduced bleeding during your period and I just thought my 3rd myomectomy was successful.

I am now considering another surgery to remove scar tissue, but otherwise, will not be able to carry a successful pregnancy. I am 28 years old and my repeat hysterscopic myomectomies left me infertile. It’s really frustrating when you are told myomectomies are the only way to preserve your fertility, yet it’s been the cause of my infertility.

Do you have a story about fibroids that you’d like to share with the Fibroid Foundation and our community? Share your story.