My Battle with Fibroids, Part One

It’s been a year since my surgery to remove uterine fibroids. My life is significantly improved—better in many ways. I can now look back on my journey with awe and appreciation.

You could say that I’ve won, but I have this feeling that they’re growing again. That’s how fibroids are. Some women, predominantly brown and Latina women, have more of a propensity to get uterine fibroids. As I intersect both demographics, I must have the right combination of genetic material to incubate them. I’m told that since I had the operation, they will never be same; that they can’t get as large as fists or deform my uterus, again. It’s the hormones that feeds them, and since I’m approaching menopause, the fibroids should naturally ease back on their growth, and eventually dissolve into the tissue whence they came, giving me peace as I age. I couldn’t wait for menopause to take care of my problem, however. My life was a nightmare.

Uterine Fibroids are a real problem when you can no longer control your bladder—going in or coming out. My life was miserable for too many months. My movements were dictated by my proximity to a bathroom and distances of travel and compounded by sitting. The math of my life consisted of such formulas:

one hour in a car

x seat belt

x the probability of a clean public toilet on the road

= maybe not

Sitting in a folded position for an extended period was also agony and resulted in complicated situations. Everywhere I went I needed to use the bathroom immediately upon arriving and again at regular intervals. If I ingested liquids, it was worse. It was not fun. I know people thought I was strange, but those brief encounters peppered with my frequent visits to their privies were nothing compared with the hardships I endured for almost two years.

Ironically, my fibroids didn’t like exercise either, especially anything that tightened my abdominal cavity or slimmed me down. All my troubles, like going to the hospital in the middle of night because I couldn’t void my bladder or the embarrassing monthly uncontrollable hemorrhaging, which ruined clothes and prevented free movement, were nearly diminished by forty-pounds of weight gain in just a year. All of these things impacted my mental health and self-image.

How could I possibly feel beautiful when my body was out of control?

I had to find creative ways to deal with the symptoms of my problem. Often in the middle of the night I found myself in the bathtub, stripped down, trying to drain my bladder in the tub. It was the only way to remove the blockage cutting off my urinary tract. Between the severe pain of the pressure of the fibroids in my pelvic cavity and the cold awakening of porcelain, this usually meant another sleepless night for me, and my partner, if he noticed that I was missing from our bed. This bizarre way of relieving my bladder developed as result of many experiments; it was humiliating, disgusting and painful, but I was driven to investigating my options by desperation and physical agony. I was often sobbing waiting for my urine to flow, but when the alternative is self-applied catheter or a visit to the emergency room, one gets inventive. Even if you practice, a catheter hurts, and when your bladder is being spliced nearly in half by a pelvic bone on one side and an angry, greedy fibroid on the other, a steady hand is not always possible. Time is critical. The longer it takes to empty it, the more painful the episode, partly because the bladder continues to fill.

You may be wondering why it took me so long to get surgery. Why did it take me so long to get surgery? My only answer is Fear. I can’t tell you how many women with fibroids whom I’ve met who were trying to juice their way through this health issue. Not wanting to engage doctors is a major factor for some women, not to mention access and that the procedure is considered elective. My previous GYN wanted to give me a cone-biopsy in the lining of my uterus with no anesthesia as a pre-op procedure. I really loved her as a doctor; she was professional and compassionate, but she was asking too much of me. That was an enormous deterrent to surgery for at least two years. I couldn’t fathom undergoing more pain with the ongoing pain in order to have a painful and invasive operation.  It’s scary to put oneself into the position where one must submit to general anesthesia and wake up to unimaginable new reality. At least, when I found the right doctor, the decision got easier.

After my second-opinion consultation with a new doctor, he left me with an important question to ponder. Was my identity as a woman tied to my womb—my actual physical uterus? Did I need it to feel whole? It immediately struck me as an issue of critical importance. I thought of a few friends who had lost their uteruses to cancer and reflected on how deeply bound to sexuality a woman’s womb can be. Also, I was aware of the historical sterilizing of black women. And, I wasn’t giving up on children just yet either. I wanted to keep my options open, which was another reason I delayed treatment. We kept hoping we could get pregnant despite the fibroids. So it was amazing that this doctor asking me what I wanted. I knew I had made the right choice; he was the right doctor for me, no matter my answer, because a person who thinks about what makes another person feel human is going to make every attempt to ensure that her humanity remains intact. That’s refreshing in a doctor, and essential in a human being.

A mentor of mine happened to have brain surgery the day after I had my myomectomy, (the surgery to remove individual fibroids from the surface and lining of the uterus). As we reflected on our lives a year later, we both agree that a good doctor can really tip the scales.  Even though the process of making the decision to have surgery can be frightening, it was totally clear that in these circumstances, a doctor with confidence and intelligence, and maybe some old-fashioned bravado, is a good thing. You want the guy or gal who can look you in the eye and say, “I’ve got this covered; it’s a piece of cake.” Silently I thought, Great. Do it. And, he did!