Commentary Health Systems

Your Voice Matters: What I Learned Before Having Fibroid Surgery

Janna Zinzi

Since fibroids are a common experience for many women, especially Black women like myself, I want to share some learnings about navigating the health-care system so others facing a similar prognosis can feel empowered instead of frightened.

This piece is published in collaboration with Echoing Ida, a Forward Together project.

Having my uterine fibroids removed was one of the best things I’ve ever done for myself. Don’t get me wrong: I was scared when I went to my gynecologist to get an intrauterine device and instead was told I needed surgery. It took me almost two years to move forward with surgery and to actually find a gynecologist I trusted. I’m not casual about surgery, and I admit I’m often skeptical about the U.S. medical system. So I tried numerous alternative remedies to avoid surgery, but my fibroid tumors were too large for any of those alternative therapies to work effectively.

After my procedure, I realized how I had accepted ongoing physical discomfort due to deep fear and mistrust of the U.S. medical system. Since fibroids are a common experience for many women, especially Black women like myself, I want to share some learnings about navigating the health-care system so others facing a similar prognosis can feel empowered instead of frightened.

Despite the fact that uterine fibroids are pretty common, they aren’t discussed in high school health class; women often learn about fibroids from other women in our lives who have experienced them. The U.S. Office of Women’s Health reports this is especially true for African-American women, who are three times more likely to have them than their white counterparts.

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So what exactly are uterine fibroids? As WebMD puts it, fibroids are composed of “renegade muscle cells that come together to form a fibrous ‘knot’ or ‘mass’ within the uterus.” They are often benign, noncancerous growths that develop during childbearing years and especially after age 30. Doctors categorize them based on their location within the uterus: submucosal fibroids are located just under the uterine lining, intramural fibroids lie between the muscles of the uterine wall, and subserosal fibroids extend from the uterine wall into the pelvic cavity.

According to the National Institutes of Health, about 70 percent of white women and 80 percent of African-American women have fibroids by age 50.

Symptoms can vary but frequently include heavy periods, prolonged bleeding, bloating or fullness in the abdomen, painful sex, and even constipation. All of these factors play a role in the affected person’s decision on whether to have the growths surgically removed, and what type of surgery is best.

Medical research organizations and doctors themselves admit that the medical establishment is still learning about fibroids and trying to understand what causes them and why Black women are disproportionately affected. I was particularly interested how a provider approached those unanswered questions when choosing a gynecologist to help me understand all of my options.

A gynecologist first diagnosed me in 2010. Specifically, my doctor told me that I had multiple fibroid tumors, including an orange-sized one that I should monitor. When I returned to her four years later, once I had health insurance again, I was shaken up by her advice to get a myomectomy (surgical removal of fibroids from the uterus). Since the orange-sized fibroid had tripled in size, I was concerned about making sure it didn’t come back post-surgery, but there was no discussion of that. While surgery was commonplace to her, I was scared about having my uterus cut open, the six- to eight-week recommended recovery period, and what all this would mean for my fertility and my work and personal life.

I was 33 at the time, so I resolved to give myself a year to see if I could shrink them without surgery. If nothing improved, I’d get them removed by age 35, when fertility typically starts to decline. I have my own mistrust and skepticism in the way Western medicine is practiced in the United States, where it’s based in capitalism and not always in people’s well-being. Thus I take surgery very seriously and want to be sure I’ve tried everything else in my power to manage my health before choosing that option.

Also, I didn’t have a gynecologist whom I trusted to hear my concerns or was open to my use of holistic methods. My family and friends listened and let me talk through my feelings and worries, but I was still afraid. I researched what surgery would mean for my body, especially my reproductive health, and spoke with herbalist and healer friends. Over the course of the year, I drank weekly herbal infusions and took numerous daily supplements like DIM and vitex. Then I made specific dietary and lifestyle changes after seeing Dr. Michelle Gerber, a naturopath doctor and midwife. I made a significant out-of-pocket investment for these things that weren’t covered by health insurance. Dr. Gerber tested my estrogen levels, which none of my providers had requested up to that point, to see if that was causing fibroids, but my levels were normal.

Although I didn’t have severe symptoms like pain and heavy bleeding, I felt full and uncomfortable like I was carrying something that wasn’t healthy. With the support of my naturopath doctor, I began to look for a gynecologist who could help me figure out my surgery options and also would listen to my concerns. This is when I realized that we as patients need to know what questions to ask.

When faced with a major health decision, it’s crucial to make sure you’re getting all the information you need to make an informed choice. Sometimes it is so overwhelming that you don’t know what you need to know or what you should ask your doctor. Issues like our reproductive health and fertility can bring up a lot of emotions because they have implications on our future plans and desires. Facts can help inform the emotion.

According to Dr. Caryn Johnson, an obstetrician and gynecologist in Atlanta, the most important questions to ask your gynecologist are: “Do I need to have treatment for the fibroids, and what treatment options are available?” (Full disclosure, she is my cousin.) Caryn told me that many women with fibroids are asymptomatic, and observation may be all that is necessary.

“Women should be clear [with themselves and their provider] about what their fertility desires are in the short term and long term,” she said. “For women with symptoms, the conversation should be about fertility and preservation of the uterus so that a more focused discussion on treatment option can be made.”

Caryn also said that size, location, and symptoms are all important factors that are used to guide treatment because “it’s not one size fits all.”

There are numerous surgical options such as myomectomy, uterine fibroid embolization, and endometrial ablation. If surgery is recommended, Dr. Gerber suggested to me that women ask how important it is to have surgery immediately to assess if there’s time to explore other options for treatment. She also recommended that patients ask how large their fibroids are, how fast they are growing, and if there’s a minimally invasive surgery that will preserve fertility, if that’s desired.

“As any surgery can affect your health in terms of scar tissue or infection, and if fertility is important to you, then you have to ask how leaving it or removing it will affect fertility,” Caryn said.

I also learned that it was important to do your own research, in addition to asking doctors about what each surgery entails, including the pros, cons, and risks.

Armed with these questions scribbled on paper, I felt prepared when I visited my new gynecologist. She started our conversation by saying matter-of-factly that because one of my fibroids was very large, I could hemorrhage during surgery and need a hysterectomy (complete removal of the uterus). I cried. While I appreciated her honesty, her delivery did not comfort me. Needless to say, I didn’t see her again.

Fortunately, the next doctor I saw, via a friend’s recommendation, answered my questions and listened to my concerns. She also was honest about the risks of hysterectomy but was clear that she never had to perform one during a myomectomy. She also talked to me about the scar, where it would be, and what it would look like, which was important to me. I eventually scheduled my surgery with her—with a bit of fear, but mostly confidence.

That experience taught me that it’s our responsibility as patients to advocate for ourselves. We have to ask questions and state our concerns. There’s no shame in walking away from a doctor who isn’t listening or isn’t treating you with respect. And particularly as a Black woman who knows the history of unwanted or coerced sterilizations that have plagued communities of color, I have learned how important it is to have honest and clear communication with my doctors. Peace of mind before major surgery is important to healing.

I also must note that I was able to get this procedure thanks to my excellent health insurance. It was frustrating trying to find a gynecologist randomly from a list of those in my area, but I was blessed to get a good recommendation. However, even after I scheduled the surgery, I still had to advocate for myself.

On the day before my procedure, I got a call from the hospital that my surgery needed additional approval. My doctor’s office had confirmed weeks before that I didn’t need this additional authorization, but the insurance company misspoke. I was angry and frustrated because I’d taken time off work, flown my mother across the country to help take care of me, and done all the “right” things. Though I was able to get the surgery a week later, had I done it over, I would have asked the insurance company to confirm that all the necessary authorizations were handled.

Additionally, it’s important to have a gynecologist who will advocate for you. My doctor shared with me that during the surgery, her assisting surgeon wanted to cut me vertically down my stomach as opposed to the bikini line incision promised to me. The assisting surgeon said that the fibroid was too large to approach it any other way. My doctor told him that she would not do that because it was not necessary and furthermore wasn’t what she and I talked about. Who knew that would even be a conversation in the operating room?!

Make sure that you have had clear communication with your doctor and that you are in agreement of the details of your surgery. Make your wishes known even if they are cosmetic. Your doctor should always let you know what the potential complications are, but be clear about what they will do to honor your safety and wishes should those arise.

One of the best resources I found when preparing for my myomectomy is this blog post from a woman in the United Kingdom who had a similar procedure. Her tips were invaluable, particularly her essential shopping list, including oversized “granny panties,” and peppermint tea. Her experience helped me know what to expect as I recovered after surgery.

When speaking with other women who have had various types of fibroid removal surgeries, one major final piece of advice I received was to give myself time and space to recover. I agree; recovery looks and feels different for everyone. So make sure you have someone there to look after you, and that you don’t try to rush the process. Sleep and rest is not negotiable! It also helps to have good doctors and nurses (and family and friends) who care about your recovery and check in on you. Make sure you have someone who can help you with basic things like getting out of bed, showering, and eating for the first few days at least. Create a Netflix queue, and get some coloring books to make lying in bed more fun. Have someone cook you nutritious meals with fruits and veggies, or set aside some money to have them delivered. Be kind to yourself.

I was blessed to have a smooth surgery and quick recovery. My fibroid was the size of a small watermelon and weighed 2.5 pounds, so good riddance! I attribute the success to my gynecologist; my naturopath doctor; my mother, who cared for me after surgery; and my meticulous preparation.

I recognize that I am one woman with one specific story. However too many women, particularly Black women, are affected by fibroids but are nervous about what to do. We suffer in silence even if we have the means to take care of our health. Sometimes it’s fear that stops us from taking care of our health, but often the fear is much worse than the reality.

Know that you are not alone. Know that your desires and your voice matter. Know that with patience and knowledge (and, admittedly, health insurance), it is possible to get the care you deserve.

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