As I age, I’m finding comfort in unlearning things I thought were the gospel. From the moment aunt flow said, “Hey girl, I’m here to make your life miserable for one week a month” as a teen, I thought heavy, painful periods were normal. I’ve spent most of my life thinking that my experience was just a part of being a woman. I was lucky to have a doctor in my youth give me some tools to help with my pain. She recommended taking Motrin a few days before my period was set to appear, but on my toughest days, a hot water bottle was her only other piece of advice.
She kept a watchful eye on things until I aged off of my parents’ health insurance at 26. It almost seemed like as soon as I got the boot off of my parent’s health insurance, I started to experience heavier cycles and cramps that lasted the full seven days of my period. Truthfully, I’d taken my ability to see a doctor for granted because it was something that was a natural part of my upbringing. Taking my healthcare access for granted caused me to delay sharing these abnormalities with my doctor while I had the chance.
Three years went by where I had no healthcare. One day I woke up and finally saw paying for my healthcare out of pocket via the marketplace as an adult action idea that couldn’t wait. After enrolling, I made an appointment at the same Kaiser location I’d visited as a child. Before my appointment, I researched fibroids. I knew that all of the women in my family had them. So, I went into my appointment, hoping for confirmation—at least then I’d know what was wrong.
I told my doctor about my concerns. I first asked if fibroids were hereditary, to which he said no. Once he said no, I took the rest of his commentary at face value. His disregard for my pain and overall health shouldn’t have been a surprise given the history of Black women and the healthcare system. The statistics don’t lie. Black women experience discrimination and bias within the healthcare system. This implicit bias didn’t just start in the days of Jim Crow. Black women were used for inhumane experiments by the “father of modern gynecology” during slavery and endured forced sterilization throughout much of the 20th century.
So a white male doctor writing me off is expected, not the exception. The healthcare system wasn’t made with me in mind. My ER visit in Los Angeles because of his negligence, just three months after moving to the city of sunshine and celebrities, confirmed that.
I knew then that it was my job to advocate for myself. Because of my negative experience with this doctor, I make it my mission to share my experience with women I speak to one-on-one and emphasize the importance of taking your reproductive health seriously. Everyone’s experience with fibroids will be different. For me, my symptoms were hard to miss: large blot clots, severe pain, sharp back pain, and even a pudge in my stomach. For others, there are no symptoms. However, the generally benign tumors can affect some women during pregnancy and as they age. If you want a more detailed list of symptoms, I found that The Fibroid Foundation was a valuable tool in my own research.
Here are a few things I’ve learned on my road to being diagnosed with fibroids.
When something feels even a little off, see a doctor.
Whenever someone asks me about my experience with fibroids, that first thing I say is I should have gone to see a doctor sooner. Well, I actually should have gotten a second opinion. The idea that painful and heavy periods are normal is an outdated norm. No one should have to spend days in their bed popping 1600mg of painkillers and bleeding through ultra tampons in minutes because we have been conditioned to think this is “normal.”
There are holes in our healthcare system, and because of this, all Americans don’t have access to healthcare. Not to mention, those who do can’t always afford the additional testing, co-pays, or the surgeries that might be a necessity. My laparoscopic myomectomy was $8,000 with health insurance.
I don’t have the answers to fixing our broken system, but for those with access to healthcare: stop putting off scheduling that appointment. For those without health coverage, Planned Parenthood is an excellent resource for pap smears and pelvic exams that can help detect fibroids, and they offer financial assistance. Fibroids, aside from causing pain and heavy bleeding, can cause severe anemia and sometimes impact fertility.
Have a list of questions
The time you have scheduled with your doctor is your time. Use it. If you’ve gone down the Google search rabbit hole or a question pops into your head before your appointment, write all of that down. Having a list of questions ensures you don’t forget any of your concerns or that a doctor who may be trying to rush you out the door can’t steer the conversation. I asked questions like, “What are fibroids? What helps them grow? What are the benefits of surgery? Can I have children even with fibroids?”
When I got my second opinion, my doctor encouraged me to ask questions. She even asked me questions about my family planning goals to get a better idea of what was best for me at the time. You are the driver of your health. Own that seat and make sure the person on the passenger side cares about your health too.
Get a second opinion
I can still visualize the doctor dismissing me while I sat in a backless gown on the plush table with loud white paper under me. I was 30 at the time of that appointment. I still had a somewhat authoritative point of view of doctors. I’d always been taught that doctors are the experts. After my experience with him, I finally understood why people distrust doctors. Finding a practitioner that will care for you with compassion can be a challenge. For that reason, I encourage you to seek a second opinion if you know something isn’t right. My ER visit wasn’t ideal. However, that experience is how I was matched with a Black female doctor specializing in helping women with fibroids.
When looking for a new doctor, I recommend starting with your inner circle if they’re in the same location. If that’s not an option, think about what you want in a doctor and reach out to your insurance company to get a list of doctors that are currently accepting new patients, then Google and look at reviews before scheduling an appointment. At your first appointment, you will get a feel for if the person is right for you. Your gut won’t lead you astray as long as you’re willing to listen to it. Learning to advocate for yourself doesn’t happen overnight, it’s a muscle you have to build. Give yourself some grace.
Do what’s best for you
I wrote my first story about dealing with fibroids in 2017 just as I was processing what my new diagnosis meant for me. I was inundated with the DMs and unsolicited advice from outsiders who had no idea what my health specifics were at the time. I had women telling me not to get surgery; I had others telling me they’d wholly gotten rid of their fibroids with special diets and supplements.
They were coming from a good place; however, their advice felt like judgment. The laparoscopic myomectomy was best for me at the time. One of my largest fibroids was sitting smack dab in the middle of my uterus, along with a polyp that helped make my bleeding worse. $8,000 later, I don’t regret it. I still have fibroids, and the fibroid causing all the trouble may just grow back. That is just the nature of the tumors.
Bleeding through my clothes and bedding is still a thing. I also still have painful days. You may be thinking, “You went through all of that for minimal change.” I think it’s all about perspective. For me, the little changes have made a significant difference. I don’t have to take iron pills that make me nauseous because I’m no longer anemic. I have shorter cycles (five days instead of seven), even if I still have heavy, painful days. I’m no longer bleeding through an ultra tampon in minutes. These are all pros. Going into my surgery, I thought it would “cure” me. There is no cure for fibroids. However, there are things you can choose to make life better.
My doctor and I came up with a comprehensive step-by-step plan that was best for me. This plan included birth control. I know that some people don’t like birth control. I don’t particularly appreciate having to take a synthetic hormone every day, but I will continue to take it if that means a better quality of life. Without my birth control, I’d be anemic and dangerously close to a blood transfusion.
If you want to change your diet, do it. If you want to try natural supplements, give them a try. If you want to lean into hormone therapy recommended by your doctor, give it a try. Your choices are just that: yours.
Please consult a doctor before beginning any treatments. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical or mental health condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this article.