Kirsten’s Story: Triumph over Fibroids and Endometriosis
I had heavy periods since high school and occasionally passed clots. Like most women, I was told that wasn’t unusual by doctors and other women who had been told the same all of their lives. As a teen, I already knew that endometriosis ran strong on one side of my family; so, in my 20s and early 30s, I assumed the symptoms I felt were likely endometriosis symptoms. Maybe I would do endo removal down the road, but I KNEW endo so didn’t ask more questions.
To address those symptoms of bloating, lower back pain, fatigue, heavy and painful periods, etc. in my early 30s, my doctor began prescribing birth control pills in such a way that I could limit or entirely skip my periods to control the growth of any possible endometriosis. Even as the daughter of a health teacher, what I didn’t know is that some of those endo symptoms are also consistent with fibroids. I always seemed to hold weight in my lower abs, even when I was wearing size 6 or 8 clothing, and well-meaning people around me always told me that was normal and just my body type.
Fast forward to 2020 through 2022: I thought I had simply been gaining weight, and I had been. However, I started to notice that it felt like it was gaining more weight where my uterus sits and I almost looked pregnant. I was not pregnant and still not aware that I had SEVERE fibroids, although in hindsight the symptoms had grown worse: I felt bloated all of the time, it felt uncomfortable to lay on my stomach, I was exhausted all of the time, my iron levels were low and more.
During my physical in the spring of 2022, just before my 40th birthday, the physician assistant felt a lump in my lower abdomen and asked me to come back for an ultrasound. They found a large ovarian cyst, but also based on the size of my uterus (which was more like the size of 2 or 3 uteri), suspected fibroids. No wonder I felt like I was pregnant. My OBGYN gave me all of my options, including continuing to monitor with imaging or doing a simple procedure to look inside and find out what was really happening—whether it was fibroids, endo or both. I opted to have diagnostic laparoscopy done in fall of 2022, and I’m so glad I did.
My OBGYN found fibroids, some massive, covering my uterus. One of the doctors who assisted with my surgery said, “Your fibroids had fibroids.” With my fibroids growing unchecked for what was likely a decade or two based on symptoms that began in my teens, and as a person who didn’t plan on having kids, a partial hysterectomy was my best option.
I rang in 2023, recovering from a laparoscopic/robotic hysterectomy. I wish I would have known sooner, but I feel lucky that I finally found a doctor who listened and that I caught it before the fibroids further disrupted my quality of life and required a more invasive hysterectomy. Just weeks after surgery, my quality of life improved dramatically. I am completely free of that abdominal discomfort and pain. I didn’t even realize how much pain and discomfort I was in until I wasn’t anymore. I’m no longer bloated, and I have so much more energy than I did pre-hysterectomy.
People don’t talk about women’s reproductive health nearly enough in this country, so it’s critically important that we tell our own stories about conditions like fibroids. Talk with your friends and family (I didn’t know until just before surgery that my maternal grandmother mentioned once in passing that she had been diagnosed fibroids. That is valuable information to pass along.). Find a doctor who will really listen when you talk about your pain and discomfort, not stop at the easy answer or perpetuate the myths about heavy periods and pain. It’s not your imagination. Always be an advocate for yourself. It can be exhausting, but you deserve the good quality of life that comes with detecting and addressing fibroids.
Christina Neal: A Mother’s Journey with Fibroids
I first found out I had fibroids when I was pregnant in 2017 with my daughter. During the pregnancy, I was being monitored monthly to make sure the fibroids were not in the way of a natural birth. One was 9 cm I believe. At the time the fibroids were not causing pain so I didn’t think I needed them removed.
Fast forward to June 2022, I was experiencing very painful period cramps. Before then I was having very heavy periods and 2 times a month. So my body was working really hard to keep up the blood production. I was always tired and I got winded doing the smallest things. In June 2022 I went into the ER and discovered that my hemoglobin count was 3. And people require a blood transfusion when the number gets to 7. So to sum it all up I ended up getting 2 blood transfusions and 3 surgical procedures to remove 1 fibroid. 1 procedure a month for 3 months. Needless to say it was a traumatizing experience but I learned a lot about my body.
Zeina’s Road to Healing
I am now 28 years old. Fibroids run in the family. As soon as I started getting heavy periods and discomfort in 2019, I knew I needed to get checked. They told me I have fibroids and PCOS. They told me the fibroids wouldn’t need to be removed until I wanted to get pregnant so I left it alone and tried to change my diet and lifestyle so that the symptoms weren’t as bad. Fast forward to 2022, my periods lasted 12-13 days with half of it being extremely heavy. I bulged on the left side and middle of my pelvis where the fibroids were. The pain was unbearable. I lost way too much blood a month, one trip to the ER, and one ghostly scare. I was severely anemic and needed two iron transfusions. I was so tired of them taking over my life, my joy, my libido, my ability to do the things I wanted to do. I had a supportive boyfriend through it all at the time.
In April of 2023, I had a laparoscopic and hysteroscopic myomectomy. While they were in there, they unexpectedly found a ton of endometriosis as well. A 6-hour surgery later and I was fibroid and (mostly) endometriosis free. The healing time went by fast, I think my body was just so ready to have them out. I was truly miserable. While I was healing, my boyfriend at the time broke my heart and cheated on me. I had so much to heal from, and I’m still healing. My family has been my rock, supporting me unconditionally and knowing exactly what I needed because they’ve been through the same thing. My two sisters are my world and I couldn’t have done it, or anything for that matter, without them. I don’t take my health and my body for granted, because I came so far and I’m finally at a place where nothing is stopping me physically. I’m hopeful for a fibroid-free future.
Do you have a story about fibroids that you’d like to share with the Fibroid Foundation and our community? Share your story.