My Fibroid Story – Part 1 – The Monsters in My Uterus

This is Part 1 of a three-part series chronicling my journey with uterine fibroids, from symptoms and diagnosis to surgery and recovery.

It’s been a while since I updated this blog, because…fibroids. My lady parts have provided their fair share of challenges for quite some time, but a couple of years ago, the issues ramped up. After increasing concern and persistent follow-up, I was diagnosed with uterine fibroids. My diagnosis culminated in an open myomectomy last month. Here’s my story.

(Any details I may have left out here are covered in my YouTube video on this topic. You can check it out here.)

What Are Fibroids?

Uterine fibroids, also known as leiomyomas, are noncancerous growths that occur in the uterus. These growths often occur in women of childbearing age. Fibroids can be as small as a seedling to as big as a grapefruit or larger. Also, a woman can have one or multiple at the same time.

It’s estimated that 20-80% of women will develop fibroids in their lifetimes. However, as common as the condition is, not much is known about the cause of them. Here are some of the things we do know:*

*For more information about fibroids, check out this topic on The Office of Women’s Health website.

Thus, I may never know what caused them to grow in the first place, but I check the boxes for most of the risk factors. Thankfully, I wasn’t surprised or scared when I was diagnosed because my mother shared her fibroid journey with me long before it was ever an issue in my life.

How I Was Diagnosed With Fibroids

My periods have always been challenging. Since Day 1. And I have been having periods for a long time – since just shy of my 10th birthday. The treatment recommendation was always birth control, but I didn’t start taking it with any regularity until college when my period challenges began to interfere with my education. My cycles seemed to level out in my 20s, with and without medication. However, things escalated rapidly in my 30s.

The Symptoms of Fibroids

Fibroids can be present with many symptoms or none at all. Here are seven of the most common symptoms:

1. Heavy bleeding (which can be heavy enough to cause anemia) or painful periods
2. A feeling of fullness in the pelvic area (lower stomach area)
3. Enlargement of the lower abdomen
4. Frequent urination
5. Pain during sex
6. Lower back pain
7. Pregnancy and labor complications
8. Reproductive problems, such as infertility

Escalating fibroid symptoms gave me lots of hints

I noticed some other symptoms, too, but didn’t think much of them. I gained about 30 lbs between 2018 and 2020. In 2020, I lost 16 lbs during my Noom journey, but I noticed that my lower abdomen still looked and felt distended, no matter how much ab work I did (symptom #2). My early period pain got progressively worse each month, radiating deep into my lower back (symptom #6). By this time, I was also experiencing progressively worsening pain during intercourse, markedly so on my left side (symptom #5). Sadly, I was so used to the pain, I thought it was normal.

By February 2022, I was 35 years old and my periods had become patchy. They were regular in timing, but I was consistently having breakthrough bleeding. Instead of having a bell curve over the course of my menses, I would have a light day or two, then nothing, then a sudden heavy day, then nothing, etc. I also had the bladder control of a toddler (sign #4).

After 12 years with my OB/GYN, I wanted a change for a number of reasons and was finally able to. My new NP at Complete Women’s Care examined me, noticed my uterus was enlarged, and immediately took concern with my symptoms. She changed my pill to Nortrel and sent me for another ultrasound. 

The ultrasound results were telling – the fibroids had grown.  

• 4 cm Subserosal (located on the outside of the uterus)
  
• 3 cm Submucosal (in the uterine cavity)
  
• 3 cm Pedunculated (connected to the uterus by a stalk)
  
• Endometrium not seen due to myomas
  

And these were the ones they could measure. 

How did we decide on an open myomectomy?

Since my husband and I want to try to conceive eventually, my OB/GYN referred me to a Reproductive Endocrinologist (RE) at Nashville Fertility Clinic. She sat down with me to review my symptoms and provide detailed education about fibroids and a potential game plan for having a baby later. Next was an ultrasound and lab work. In her ultrasound, my specialist mentioned that my symptoms made sense based on what she was seeing. She noted that some of my fibroids had calcified (died). I don’t recall hearing the entirety of what she saw, but I knew it must have been concerning when she immediately recommended an open myomectomy.

There are many options available for treating uterine fibroids. Here are a few of the common ones:

• Medication – Medications may be prescribed to manage fibroid symptoms or control the hormones that affect fibroid growth
• Uterine Fibroid Embolization – a procedure to shrink the fibroids by blocking their blood supply
• Myomectomy – surgery to remove the fibroid(s)
• Hysterectomy – surgery to remove the uterus

The treatment option chosen to treat fibroids varies based on symptoms, long-term goals, and the fibroids themselves. For example, a hysterectomy is the only guaranteed permanent treatment option; fibroids can grow back. However, that was not an option for me, as the plan is to try to conceive at some point.

Due to the size and location of my fibroids, the myomectomy was the best option. Something in my gut trusted my surgeon’s instinct (no pun intended). What I learned about my case after my surgery confirmed that it was the right decision.  

What I learned from my fibroid diagnosis

My journey from symptoms to diagnosis taught me several things:

Family medical history is important. Knowing that I had a family history of uterine fibroids helped me to face this challenge more adeptly. My diagnosis was not a surprise to me and being able to talk to my mother about her experience armed me with information to ask good questions and make informed decisions about my care.

Not all pain is normal. From the time we are introduced to the idea of having a monthly period, we are told to expect pain. We are told that cramps are normal, heavy bleeding might be normal, and headaches – just blame it all on Premenstrual Syndrome (PMS). What we don’t get is a gauge for what kind of discomfort isn’t normal. And women definitely aren’t encouraged to trust our bodies. We have to do a better job of distinguishing what is common from what is OK and share those experiences so we know.

You have to advocate for yourself. If you aren’t sure whether the pain you have is something to be concerned about, ask all the questions. If you’re not satisfied with the answers you get from your healthcare provider, it’s ok to get a second opinion. You live in your body, all day, every day. Women’s intuition isn’t just for cheating boyfriends, LOL. (And please be sure to prioritize your regular health screenings, including your Well Woman exam with your OB/GYN.)

Stay tuned for Part 2 of this series, where I’ll take you inside my myomectomy surgery and recovery process.