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Fibroids: Story of Freedom
Challenge: Sharing My Journey
Note: You can also watch or listen to my story on my podcast on Apple Podcasts, Spotify, YouTube, or another favorite podcast player you prefer.
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I felt a little guilty after I realized that I’ve never publicly shared my issues with uterine fibroids. I’m not one to sit in guilt or shame, so here is my story. (Thank you to Antoinette Yvonne, a digital nomad, who shared her story and called other women out to share theirs.) I’ve been blogging since before it was called blogging (since 2000), but I’ve never shared my fibroids story online, until now.
Two Decades With Severe Bleeding and Large Fibroids
Before my first pregnancy, I was diagnosed with uterine fibroids and placed on birth control pills to manage the bleeding. Unfortunately, soon after starting on the pill, I was seeing a therapist weekly. She recognized my mental health issues may have been caused by the pill and recommended that I get off of it and get pregnant. We were ready to start having kids about 1.5 years into our marriage, so that’s exactly what I did. And my mind went back to normal, and life started life-ing and moving forward with babies, babies, babies… four pregnancies and 3 live births from 2001 through 2006. I loved being a mom… and loved being pregnant with no periods.
Well, then that hiatus from periods ended after our last was born a preemie, and I got my tubes tied. When my menstrual cycles came back, it was with a real vengeance… almost as if my uterus was mad at me for all the babies. LOL! I laugh now, but I was not laughing back then. The fibroids had multiplied in number and size. Unfortunately, we could no longer afford my health insurance, so I opted for natural health methods for over a decade. I tried supplements and certain eating styles, but nothing helped with the fibroids, pain, heavy bleeding, and very intense mood swings.
Eventually, I had insurance again, and it was just in time. I was severely anemic and didn’t know it. My healthcare provider at the time, Kaiser-Permanente (K-P), had to put the iron directly into my bone marrow in their infusion center, where cancer patients receive chemotherapy. That was painful, but my health improved quickly, so it was worth it.
But, I was still bleeding… a lot. Just to be very transparent… I was using an ultra pad with an ultra tampon and still had to change them every hour or two (and sometimes sooner). If you don’t already know, an ultra tampon is about the size of a washcloth once it’s full of liquid. So, I was losing a lot of blood and becoming anemic again. I was very close to being hospitalized. My ob-gyn started me on a progestin hormone (provera). Initially, it was an injection every three months. Eventually, they put me on a daily pill, which I stayed on for years. I came off of this pill briefly when I had emergency surgery for something else… and again hemorrhagic bleeding returned. So, I finally got a hysterectomy surgery referral, through a different provider outside of K-P, who had been refusing me surgery.
Last year, I finally got the hysterectomy that I had been asking for since first getting insurance again in 2018. The surgeon said that my uterus was the size of a 5-month pregnancy and had 6 to 8 large fibroids embedded in the wall. Unfortunately, my care provider with K-P before this surgeon had lied to me and told me I couldn’t have a hysterectomy because of too much scar tissue from multiple c-sections. I found out this was a lie after switching providers. The reason K-P lied is that they use in-network providers only and did not want to have to provide me with surgery.
Who would lie to me like that? K-P’s Dr. Carter, who the last time I checked, actually became one of the heads of their OB-GYN department in Atlanta. I liked and respected this female black doctor, so when I discovered she had lied to me for years, it helped me make an important mind-shift in how I view healthcare providers. Also, seeing the K-P commercials lying about how wonderful and caring they are infuriates me. They’re cheap. They’ll only provide up to a certain level of care, and if you have any specialized needs, you are shit-out-of-luck with them.
I am currently with a regular insurance company through the Healthcare Marketplace (now it’s called the Georgia Healthcare Marketplace). In 2023, I actually had two surgeries (technically four surgeries including hernia repairs), so my hysterectomy ended up being completely free. All of my out-of-pocket expenses had been met. God is faithful to answer our prayers, no matter how long it takes. I am so grateful. Alleluia!
I am finally period-free for the first time since I was in elementary school and when I was pregnant. It took me longer than 6–8 weeks to fully heal because I am older and because I also had two hernia repairs. After about 12 weeks, I was doing so much better physically and able to move my body better with a lot less pain. This was not just from getting rid of the fibroids, but also from the hernia repairs. And now I am still working towards other health goals, also.
In a previous post (End of Summer Hiatus), I shared about one of the outcomes of my no longer having a period… finding out that I have ADHD/ADD (inattentive type). My horrible PMS symptoms for the past 40+ years were masking the fact that I was struggling with ADHD. Everyone assumed my moodiness and issues during the PMS (premenstrual syndrome) time was just female hormone craziness. Unfortunately, they were wrong, so I never got the important support I needed all these years.
I am so grateful to be getting that help now, though. I am continuing to learn what ADHD (and neurodivergence) is and how it shows up in my life. I am continuing to get support when I need it. And I am taking better care of myself, day by day by day.
The most important thing I learned through my fibroid journey is to keep asking for help. I learned to keep seeking the proper providers to help when others are missing the mark. I learned that persistently advocating for myself is just as important as when I doggedly advocate for my loved ones. I learned to love myself more by valuing my life and well-being more. I learned that I do not have to suffer… it’s not a badge of honor.
Also, I can honestly share that I do have some regrets from my fibroid journey (and not knowing about ADD). I wish I had not suffered for so long because it greatly impacted my family… I could not be my best self as a wife and mom for them. Unfortunately, we cannot turn back time, but I can share my story and hope it helps other women and girls to seek help sooner.
Despite my regrets, I am happy to finally be fibroid-free in this phase of my life. I am grateful that God led me to my fibroid freedom.
If this is an issue for you (or a woman you love), reach out. I am not a healthcare pro, but I have been through a lot and am willing to be a listening ear. You can connect with me through my main website. Here is that link:
Happy New Year. I hope that you have the best year ever for yourself, every area of your life, and everyone you love.
~ Coach Donna Marie
