The female medical mystery on my latest episode of Sex, Body, and Soul is fibroids. Did you know that about 70% of women have uterine fibroids by age 50? That number is even higher for Black women: about 85% of Black women over 50 have one or more fibroids, and a quarter of Black women have them by age 25. If you don’t know what a fibroid is, what they do, why this matters, and how they are treated, you need to check out this podcast with Dr. Jennifer Elisseeff, professor and director of the Translational Tissue Engineering Center at the Johns Hopkins University. If you already know about fibroids – maybe you or a woman you love has one - this podcast is for you too. In other words, it’s for everyone! I’ve had fibroids for years, but as always, I learned lots of new things from this conversation.
First things first - what exactly is a fibroid? Well, it’s essentially a benign tumor. What I didn’t know before I talked to Dr. Elisseeff was that the benign tumor itself is only the start: what really causes trouble is the fibrosis that forms around the fibroid. So what is fibrosis? It’s the scar tissue that forms around a cut or wound that heals the wound but doesn’t look exactly like normal tissue. It contains abnormal blood vessels that can lead to heavy bleeding. Thankfully, I didn’t have this experience, but women who do can practically bankrupt themselves buying pads and tampons, and replacing mattresses stained by heavy bleeding at unexpected times.
While some women have a significant level of disability associated with their fibroids, other women never know even know they’ve got one. Of course, this depends on where in or around the uterus the fibroid is and how big it gets. Mine never bothered me until I tried to get pregnant. My fertility treatment seemed to feed them - the biggest one ballooned to the size of a cabbage during my pregnancy until it was about the same size as my baby! Needless to say, the pressure on my internal organs from baby + fibroid made my pregnancy very uncomfortable.
Women who have fibroids may experience heavy or prolonged periods or bleeding between periods, and pelvic or lower back pain. Fibroids can also cause frequent urination as the fibroid squishes the bladder or result in constipation as it presses against the bowel. My friends have also described discomfort in their abdominal area that morphed into feeling like they were five months pregnant once the fibroid reached a certain size. So while fibroids aren’t usually dangerous, they can definitely affect your quality of life. It’s not unusual for me to need to pee several times before I’m ready to leave my house, much to the chagrin of my daughter!
If you don’t have any symptoms from fibroids, you can just let them be. Fewer than 1 in 1,000 fibroids become cancerous, so the risk they pose is very low. They also generally shrink around menopause, and some just go away. However, if they are impairing quality of life as they often do, there are ways to shrink or remove them. Unfortunately, most interventions for fibroid relief are still surgical in nature. For instance, the fibroid’s blood supply can be disrupted with a procedure known as embolization. This usually kills it (slowly and often painfully), but leaves some of the bulk behind. Consequently, many women with significant symptomatology opt for removal of the uterus (a hysterectomy), as this is the only sure-fire way to eliminate uterine fibroids for good, but it is a fairly major surgery.
Dr. Elisseeff and her team at Hopkins are working on developing more non-surgical options they hope will be available in the next 5-10 years, which is such great news! Imagine a world when women with uterine fibroids (or other fibrosis, like around breast implants or other internal scarring) can be treated with a simple therapy locally to treat and shrink it without a scalpel. Game changing in so many ways!
You would think that a condition that affects so many people would already have lots of non-invasive treatments available, but clearly fibroids have not been a priority for the medical research world. Dr. Elisseeff and I agree there are several reasons for this, including the fact that the bulk of funding for research and product development is directed by men, and that men in general don’t understand how the female body works.
In fact, with the exception of breast cancer, women's health has largely been overlooked for a long time. We need more researchers and more funding going to women's health! We need more and better education, particularly for men and boys about women’s bodies, how they work, and what happens when they do not. Importantly, we all need to work harder to destigmatize women’s bodies and their functions.
Dr. Elisseeff informed me that in 2010, the cost of fibroids was $34 billion, and I’m sure that number is even higher today. But when I meet with potential funders who are men to talk about these “female issues”, they often end up looking at each other, embarrassed at the topic and perhaps their lack of understanding as well. It is not surprising to me at all that only 2% of venture capitalist funding goes to female entrepreneurs, with even less money directed to “femtech” businesses like The Body Agency, despite their relevance to more than half the population.
The Body Agency is working to raise the profile of women’s health, both in the U.S. and overseas. I am very proud of our Dignity Kit that contains much-needed survival items like period and safety products for women and girls living in and evacuated from crisis regions around the world. When fighting broke out in Ukraine a few months ago, we worked around the clock to team up with Vital Voices and Better Leaders in Poland and our corporate partners to get these kits moving into the hands of girls and women across our networks of refugee camps. Some of these women are already back in Ukraine on the front lines (with our kits!). You can donate a Body Agency Dignity Kit to a Ukrainian refugee for $49 here.
Take care of yourselves so you can be your best today and every day!
All my love,