Living with fibroids means more than very heavy bleeding

Have you ever heard about uterine fibroids? Uterine Fibroids are abnormal, noncancerous growths in, on or around the uterus that appear during the fertile years. There can either just be one or a whole bunch of them. They can vary in size from just a little seed up to as big as a grapefruit. Fibroids, also called myomas, can cause a variety of symptoms ranging from very heavy periods, extreme abdominal pain or urinary problems. Yet, not all people living with fibroids experience symptoms and most people don’t know they even have uterine fibroids. 

Living with fibroids

By the age of 50, as many as eight out of ten uterus owners will have uterine fibroids, making it a common medical issue. Despite the prevalence of the condition, it is yet another under-discussed topic of people having an uterus. The cause of fibroids is still unknown as limited attention on the condition of fibroids comes with lack of research and treatment options. Today we are raising awareness for what living with fibroids looks likes by publishing our interview with Rosco Spears, who was diagnosed with having fibroids eight years ago. Thank you so much, dear Rosco, for sharing honestly with us what your life and experiences with fibroids looks like.

Welcome! Please introduce yourself.

I’m Rosco Spears. I am a painter, teaching artist, lover and partner. And I am the creative director for The Lip Bar, a vegan cosmetic line based in Detroit, MI. I am currently living in Beacon, NY.

What was your medical history until the final diagnosis of having fibroids?

For about 2 years, I experienced very heavy bleeding and cramping. In 2011 I started to seek answers about my body. I saw a few different doctors. They all agreed that I was just a heavy bleeder and there was nothing to be concerned about. I was prescribed birth control, which caused me to bleed for 2 months straight, so I decided to just deal with the heavy bleeding. I moved to New York in 2012 and started seeing new doctors. It was then that I was diagnosed with having fibroids. During this year, I lost a lot of blood, had my first blood transfusion and an abdominal myomectomy was suggested to remove the fibroids.

What is your experience with doctors?

My experience with doctors has been a whirlwind. I’ve realized that with most doctors, you will need to ask for an ultrasound (one of the few ways that fibroids can be diagnosed). I went years with doctors telling me that I was just a heavy bleeder. It wasn’t until recently that I had a doctor thoroughly explain fibroids to me by drawing a diagram and how the placement of fibroids in or around the uterus can affect you differently. I’ve also never had a doctor tell me of any holistic practices that could be done to help ease the pain and bleeding. Visiting a doctor has generally been a lonely experience where I left with unanswered questions.

Photo Credits: Rosco Spears

Which symptoms do you have?

I was anemic for years. I experience very heavy bleeding and clotting. Sometimes the clots are the size of my fist or larger (see above picture). I experience extreme fatigue when I am clotting in large amounts. There are days where all I can do is go to the toilet and go back to bed because I don’t have energy for anything else. When a clot is trying to pass, the pain that is felt is indescribable. Medicine no longer works for me. I’ve also developed a heart murmur due to my low levels of blood. I finally got on Norethindrone, a birth control that was supposed to regulate my period. I bled everyday for 15 months straight, beginning in October of 2018. Now, I will experience clotting and high levels of pain when I’m in high stress situations or with intense workouts.

Which treatment options or therapy forms have you already tried?

In terms of treatment, I’ve tried some of everything. I’ve tried cutting meat, soy and dairy. I’ve tried acupuncture. Endless numbers of herbs and teas and yoni steaming. I received my first surgery for fibroid removal, an abdominal myomectomy in September of 2013.

Are there any everyday habits that help you to live better with fibroids?

Everyday habits that make living with fibroids easier include managing my stress levels. Making sure that I take an iron supplement daily. Cutting soy and dairy from my diet and limiting my meat intake. Deep breathing exercises and sincerely listening to my body also help a great deal.

What is living with fibroids like?

Life with fibroids is hard. It’s anxiety inducing. Life with fibroids is having to carry an extra set of clothes to work because you may ruin your pants en route. It’s losing so much blood that you have to get blood transfusions, but you’re also used to living life half energized.

Do you have questions about living with fibroids?

Thanks so much for helping us learn more about living with fibroids, dear Rosco! If you have more questions about uterine fibroids, check out the non-profit Fibroid Foundation, who are dedicated to sharing knowledge, treatment options and general information about fibroids. They have also initiated the Uterine Fibroid Awareness Month, which is every July (and inspired this interview), to close the disparities in health information, research and lack of awareness when it comes to living with fibroids. As always, feel free to share your experiences and stories with us, if you are affected with uterine fibroids as well.