My Fibroids Story: Breaking the Silence

Discover my reality of living with fibroids as I share my personal journey, shedding light on the physical and emotional impact they had – and continue to have – on me. Join me as I share the steps I took to break free from their grip, offering solidarity and insights for those dealing with this often-ignored/whispered-about common condition. This is the first in a series of blog posts about my fibroids journey.

Imagine living with a secret pain that affects not only your physical well-being but also your emotional state. For countless women around the world, this hidden struggle is a reality as they battle against a condition that often goes ignored: uterine fibroids.

I decided to share my journey because I think it’s important to talk about this. So much of what I learned and heard about uterine fibroids, I wish I’d learned much sooner. Once I started talking openly about it, I learned that I have many close friends and family members who have/had fibroids. To those who are reading this while learning about your fibroids, please know that you are not alone. You can always reach out to me if you need someone to vent to about it, or if you have any questions about my journey.

What are fibroids?

Let’s start with the basics: What are fibroids?

According to the Cleveland Clinic, “Uterine fibroids are a common type of noncancerous tumor that can grow in and on your uterus. Not all fibroids cause symptoms, but when they do, symptoms can include heavy menstrual bleeding, back pain, frequent urination, and pain during sex. Small fibroids often don’t need treatment, but larger fibroids can be treated with medications or surgery.”

The exact cause of fibroids is unknown, but some healthcare professionals think they’re linked to progesterone and estrogen. The Mayo Clinic suggests that gene changes, hormones, substances that help the body maintain tissues, and the extracellular matrix (ECM) may play a role.

Fibroids are not uncommon – in fact, anywhere from 20-70% of people with uteruses will develop fibroids during their reproductive years. They can vary in size, type, and impact.

What are the symptoms of fibroids?

Many people don’t have symptoms, but the symptoms that can come with fibroids may vary from person to person. Symptoms can include:

• Painful periods
• Heavy menstrual bleeding
• Irregular periods (more frequent, longer, etc.)
• Pain in the pelvis, abdomen, or lower back
• Anemia
• Bloated abdomen that can make you appear pregnant
• Constipation
• Pain during sex
• Frequent urination or trouble urinating
• Spotting or bleeding between periods

This is a post about fibroids, and if you’ve read this far, you’re probably ready for more details, right?

I believe that I have had fibroids for a number of years, based on a number of symptoms I exhibited since I first entered my reproductive years. The worst of them all for me was the heavy bleeding.

I would go through a Super Plus tampon every hour on my heaviest days, and I would just feel like I was bleeding out. I had no energy on those days, and I felt utterly terrible. My periods were extremely irregular before the last couple of years, but they were finally mostly pretty regular – that was, of course, before getting poked and prodded right in the ol’ fibroids. After that, they went gangbusters and my schedule was thrown completely off! My period became even more painful and unpredictable, and I couldn’t have been happier to get that surgery scheduled! But, I’m jumping ahead, so let’s back up a moment.

How are fibroids diagnosed?

Fibroids can be initially diagnosed through a pelvic exam with your gynecologist, but are often diagnosed through pelvic and/or vaginal ultrasounds, and sometimes through an MRI.

I had been complaining about all of these symptoms for years and got a new gynecologist this year. Nothing was found during my regular exam, but I shared that I was concerned that something else was going on with me. I was initially recommended to get an IUD to help with the heavy bleeding but was also referred for pelvic and vaginal ultrasounds.

The ultrasound process was very uncomfortable. I couldn’t use the bathroom beforehand, as you have to come in with a full bladder. Normally, that wouldn’t be a big deal, BUT, they are pressing on your bladder back and forth for several minutes, and all I wanted was to run for the bathroom!

When the technician ran the ultrasound over my pelvis for the first pass, she immediately said, “Oh yeah, you have fibroids.” After the pelvic ultrasound, they have you empty your bladder for your vaginal ultrasound. This was especially painful. There’s a wand that they insert into you and move around to collect the images. That wand is much wider than I was anticipating, but the jabbing got me. It was really unpleasant! But, on the plus side, the combination of these two confirmed that I had fibroids – and quite a few of them!

The radiologist came in to explain to me the next steps. She informed me that they normally take the four largest fibroids and send their recommendations to your doctor based on these. Of course, I had way more than four! Bonus: There are four types of fibroids, and because I’m an overachiever, I had all four types!

What were my thoughts and emotions around the diagnosis?

I felt relieved when I learned that I had fibroids. I was so confused about the various symptoms I’d been experiencing over the years and knew something was wrong. It felt good to receive confirmation that I was right in continuing to advocate for myself!

As I explained earlier, most of the symptoms I had were not new symptoms. Year after year, exam after exam, doctors put me on birth control or just ignored my concerns altogether. I’m so grateful for the gynecologists and nurse practitioners at Capital Women’s Care because they took the time to listen to me, talk me through my options, and develop a care plan for me – before, during, and after surgery.

Options for Treating Fibroids

“There’s no single best treatment for uterine fibroids. Many treatment choices exist. If you have symptoms, talk with your care team about ways to get relief.”

The Mayo Clinic

I was presented with a few options for treating fibroids, ranging from totally scary (to me) to what felt like not doing anything.

• Hysterectomy
• Endometrial Ablation
• Laparoscopic Myomectomy
• Intrauterine Device (IUD)
• Wait and do nothing until menopause, and then get a hysterectomy
• Run out of the office and don’t look back (this was the option I presented to myself, to be honest)

Hysterectomy

This was the scariest option for me. I kind of want to leave here with the same organs I came in here with. I’m not planning to have kids, but with this option, I absolutely cannot get pregnant. The idea of having the option completely taken away from me was terrifying! Further, I was very concerned about the hormonal impact of having my uterus removed.

My doctor was able to perform this surgery, so I wouldn’t have to see a specialist, but that wasn’t enough to sell me on it.

Endometrial Ablation

This was a procedure my mom had, and I wasn’t really sure what it meant until my doctor explained it to me. In this procedure, you can actually still get pregnant, but it’s really dangerous if you do!

According to the Mayo Clinic, “You aren’t likely to get pregnant after endometrial ablation. But it’s a good idea to take birth control to prevent a fertilized egg from forming in a fallopian tube, called an ectopic pregnancy. Without treatment, the growing tissue might cause life-threatening bleeding.”

Yikes!

This one was an immediate no for me!

Laparoscopic Myomectomy

This option for fibroid removal was the most appealing to me and is the option I ended up taking. This would have to be performed by a different doctor in the practice who has a lot of expertise in this procedure and also required me to take a couple more tests.

I’d never had surgery before, so the idea was intimidating, but this felt like the best option for me. The recovery was going to be longer than I would’ve liked, but it also sounded like it would give me the most relief without losing an entire body part – just those gremlins!

Intrauterine Device (IUD)

As I mentioned earlier, getting an IUD installed was sort of the impetus for this entire process. Some doctors recommend getting an IUD installed for period regulation and to help with some of the symptoms of fibroids, but I thought, “Why not just cut them out?” But, I’ll explain in a later post how I also got an IUD installed at the end of my surgery.

What Until Menopause

Uh, do I want to wait another 20 years to see how big they’ll get and have increasingly worse symptoms the entire time? That’s a big NOPE for me!

Run Away

While this was perhaps really the most appealing option, I had to be an adult. Running away was not an option!

So… What Next?

In the next post in this series, I’ll share the next steps in the process and tell you all about my surgery!

Do you have questions about my experience with fibroids? Have you been on your own journey? Drop a comment below or send me a message!

Learn more about period poverty

Check out this post about period poverty and learn how you can support women in need.