"“Have you thought about how this has affected you?” my therapist asks through my desktop screen. I pause. “No,” I say. I had normalized the endless visits to the doctor’s office, the iron infusions, the countless occasions where I woke up to bloody sheets and pajamas, the fatigue I couldn’t seem to shake, and the fact that I’d been bleeding for over a year. I felt awful every day, like I had no control over my body. So I buried my feelings.
After months of uncertainty and confusion, I finally received confirmation that fibroids were wreaking havoc on my body again. Having surgery was my best (and only) option, and I had no idea what to expect. I’d been here before, as I had my first fibroid surgery in the spring of 2018. But even with my previous experience, I felt just as fearful as the first time. After six years of chronic symptoms, I see my fibroid diagnosis as a journey that requires a lot more thoughtfulness and advocacy—heavy on the advocacy. Now, I believe it is my mission to openly discuss my experience because the more we talk, the less alone we feel.
This journey isn’t one I signed up for, but seems to be part of Black womanhood–Michigan Medicine reports that by age 35, 60% of Black women will develop fibroids. Additionally, Black women are diagnosed with fibroids roughly three times as frequently as white women, develop them earlier in life, and tend to experience larger and more numerous fibroids that cause more severe symptoms. My journey isn’t over yet (I have one more surgery to go), but here are 10 lessons I’ve learned along the way that I hope will be helpful to others.
1. Don’t delay doctor visits
Going to the doctor heightens my anxiety. So much so that my blood pressure skyrockets. But waiting to see my provider means finding relief can take much longer (and care could be more expensive). I had to wait four months to schedule my most recent surgery because we had to hold off on my blood levels to improve. And before that, I had months of testing, from blood work to multiple ultrasounds, before my doctor approved me for surgery. The lesson learned is to never put off doctor visits, whether it’s to talk about symptoms that come up or to get tests or surgeries. Putting off seeking help will only make an already debilitating timeline more exhausting.
2. If you have insurance, work to understand it
Being fully informed about your coverage is essential. I chose to pay a high premium ($491 a month) to meet a lower deductible ($1,500). Because I pay so much every month, I ensure I get my money’s worth. No matter how you’re paying for it, your insurance is an investment in your overall health. This journey taught me to prioritize taking care of my body because I am fortunate enough to have access to health insurance. If you’re unsure of your coverage, your healthcare portal knows all. If you need more help, call the 1-800 number repeatedly until you get someone helpful. Ask all the questions you have and take diligent notes.
My hysteroscopy to remove the fibroid was $1,095.00. My insurance only covered $492.00 because I hadn’t yet met my deductible. Since my doctor was only able to get 50% of that fibroid (something she warned me about pre-op because of its size), an MRI was next to help us navigate my next steps. I paid the $350 copay on this MRI (which is still a lot) instead of having to pay the full cost (the average MRI cost is $1,325) out-of-pocket to meet a high deductible. I know health insurance can be confusing and overwhelming, but ask questions. Lots of them! Each healthcare organization has a member’s service number to call. Use it.
3. If you don’t have health insurance, look into alternative options
Treating fibroids is costly. It shouldn’t be, but it is. If you don’t have health insurance (but even if you do!) take it from me and utilize the Affordable Care Act. That’s how I was able to get my first surgery in 2018. My income-based premium was $127 monthly for a decent plan with Kaiser Permanente. I know it could be better (i.e. free), but I’d encourage you to consider it as an option. Additionally, Planned Parenthood always gives access to reproductive care, including annual exams, pelvic exams, and STD screenings, with or without health insurance.
4. Advocate for yourself
Before I got matched with my current OB/GYN (who is a Black woman), I had a white male doctor tell me that I didn’t have fibroids–without any testing whatsoever. Three months later, I was lying in an ER dangerously close to needing a blood transfusion because I’d lost so much blood from the fibroids he said I did not have. If your practitioner doesn’t listen to you or doesn’t have a sense of urgency to help relieve your symptoms, find a new doctor. Finding the right doctor may take some time and a few phone calls, but don’t stop until you get what you need (and deserve). Like your favorite restaurant, you can typically look up a practitioner’s reviews online.
5. Plan ahead for when pain strikes
The last time your partner or parent was sick, you dropped everything to take care of them and help them heal, didn’t you? When was the last time you offered yourself the same level of thoughtful care? I encourage you to make a plan ahead of time for how you will intentionally care for yourself when you start experiencing pain from bad cramps or aren’t feeling good. Can you meal prep ahead of time or budget ahead so you can order meals instead of cooking? Do you have flexibility to work at home from your couch? Can you ask a neighbor or friend for help with errands? I know that taking a break from the world is easier said than done, especially if you’re a mom or have a demanding job. If you can’t take a break from your responsibilities, even just planning ahead by compiling a period care kit has been a lifesaver for me. Speaking of…
6. Have a go-to period care routine
I’m no longer waiting until I fold over in pain to care for myself. At first cramp, I reach for the pouch in my kitchen cabinet filled with all of my period care essentials that I restock each month. To start, I pour a packet of Trader Joe’s ginger powder into my favorite mug, pop on my kettle to boil water and sip away. Why ginger tea? A 2017 study found ginger was as effective as ibuprofen and mefenamic acid in relieving menstrual pain. As someone who has to take 800mg of ibuprofen at minimum to feel relief, that study makes me reach for ginger tea first because my doctor told me that taking too much ibuprofen isn’t great for the liver.
Next is my period care trio: Rael Heating Patches. I love these because I can use them on the go. Then there are my herbal-infused pads from The Honey Pot. I know “spicy pads” aren’t everyone’s favorite, but they help with my cramps so much! Lastly, is my Oui the People Big Mood Bath Soak. The thought of soaking in the tub with a heavy period used to make me cringe. Now, it’s a part of my monthly routine. What provides me comfort may not work for you, but hopefully, this gives you a place to start. Find the products, rituals, and routines that bring you comfort or some relief while on your period and stick to them religiously.
7. Ask your doctor about checking iron levels
Because fibroids often lead to heavy bleeding, anemia can be common in people with fibroids. If you’re always tired, craving ice like it’s the best meal you’ve ever had, and have heavy cycles, those could signal your iron levels are very low. Checking iron levels is as simple as a blood test–ask your doctor to check hemoglobin levels and share any symptoms associated with anemia. Getting blood drawn can be uncomfortable, but trust me: it’s worth it.
Iron infusions drastically helped my anemia symptoms. The process is not as frightening as it sounds–my infusion lasted about two hours (but they can last up to four). I was in a room with Wi-Fi, a comfy chair, a television, and IV drips. I watched The Real Housewives of New York City. After my treatment, I felt a little tired, but weeks later, it felt like an energy light switch had popped inside me. If this has yet to come up in conversation with your physician, don’t hesitate to ask if it’s an option.
8. Be aware of how diet affects your symptoms (but don’t stress too much)
As a Black woman from the South, fried food and red meat were once a large part of my diet. But research has found that many nutrients and dietary habits are associated with fibroid development risk, such as low intakes of fruit and vegetables, as well as pollutants in food. I’m now opting for more foods that may be better at fighting fibroids like apples, tomatoes, broccoli, cabbage, and kale. Each morning, I make a smoothie with frozen spinach (for iron), blueberries, pineapple, a whole apple, and coconut water.
However, when my mom makes fried fish, collards with ham hocks, or oxtails, I’m most definitely lining up for a plate because those recipes have been passed down for generations. I know to prioritize foods that make me feel good most of the time, without stressing or feeling guilty when I do want to indulge in the foods I love.
9. Vitamins and supplements can help too
After digging into clinical studies, I found that many women with fibroids are often deficient in vitamin D. But before you go out and load your cart up with supplements, this is another opportunity to chat with a healthcare provider so you don’t overdo it on vitamins your body doesn’t need.
Personally, I have found great success taking Perelel’s Women’s Daily Vitamin Trio. I like them because they’re developed by an OB-GYN and come with vitamin D, omega DHA +EPA (great for combatting inflammation–another supplement I found was beneficial for fibroids), and a capsule with collagen and biotin. I found that this combo simplifies my vitamin routine so I don’t have to think too hard about what to take. I also take my HUM Nutrition probiotic every morning to help with gut health, and it dramatically affects how I feel, especially during my cycle. While these are the supplements that work for me, always talk to your doctor, test vitamin levels, and be your own guinea pig to find the supplement routine that works best for you.
10. Find joy, even during life with chronic pain
Living a happy and stress-free life with chronic pain feels pretty impossible. I plan my entire life around my pain and the 99.9% probability that I will bleed through my clothes at least four times a month. Then there’s the regular doctor’s appointment and money that keeps funneling out of my bank account toward appointments, surgeries, and treatments.
I used to take the “It could be worse” approach, but my therapist challenged me to rethink that thought process because it diminishes my experience and the experience of thousands of other women with fibroids. Instead, what has helped me feel better while dealing with this journey is asking myself, “How can I make this suck a little less for someone else?” I share my experience in case it helps other people feel less alone. I even created a short film called Super High about an experience I had while attempting to manage my fibroid pain, and it was extremely cathartic to breathe some life into this journey. By getting this short film made, I’m able to destigmatize conversations about these issues. Women’s health deserves to be talked about openly and without shame.
Finding happiness and releasing stress while dealing with chronic pain looks different for everyone. It could be canceling plans, watching your favorite movie, and lighting your favorite candle. It could also be taking yourself to a nice dinner to reward yourself once your pain subsides. Whatever it is for you, make the time to do it, even if it feels impossible. Finding joy is possible, even when it feels like it’s not.
Bianca Lambert is an Atlanta native who has contributed to People.com, ESSENCE, Who What Wear, Byrdie, HuffPost, and more. To learn more about “Super High,” the Short Film, visit thefibroidshort.com.
Please consult a doctor or a mental health professional 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.