My Battle with Fibroids, Part II: A Look at Procedures and Options

For the record, a fibroid is a benign tumor. Don’t ask me to define benign; fibroids are not benign to me. But thankfully, they were not cancerous. Fibroids can occur in many places in the body. Some are easily treatable; others are not. From what I’ve seen, these things are never pretty. I know more about benign tumors than I care to. This is because I needed to know everything I could to understand what was happening to my body so I could reclaim it. If you look at real fibroids, especially those where someone’s bloody insides are laid bare to the voyeur’s camera, you will marvel at how our bodies keep their form.  At least I did.

When I first learned that I had fibroids, it was almost five years before I had surgery. Since I didn’t have health insurance at the time, I was seeing a doctor at a free clinic in Oakland. By that point, my monthly cycle was severely effected and a lump could be seen and felt bulging through my abdomen. My heavy blood flow and uncharacteristic cramping during my menstrual cycles urged me to seek medical attention. These changes were the first warning signs for me that something was wrong. That first doctor I saw at the free clinic wanted to perform surgery right away, but frankly, I didn’t think my problem was severe enough to warrant it, and I was secretly afraid of an enormous bill following a hospitalization. I saw my parents’ big bills as a child, and I didn’t want any of those showing up at my door. At that time I was fairly broke, was attending a private graduate school with its own hefty bill, and didn’t want to add to my financial worries. The doctor, my apprehension notwithstanding, sent me for my first ever ultrasound.

At the insane (free) ultrasound clinic—it was exactly like DMV only with lots of pregnant women crowded into a large room with side corridors for more crowding and waiting—, my fibroids were measured if not weighed, and I could clearly see in the gray images on the screen, the two bulbous forms attached to my uterus. What a surprise it was to learn they were twins. Ugh…I know, poor taste. Please excuse my vulgarity, but it was that odd to see them on the very small screen filling my pelvic cavity with their grotesque form, attached to my uterus and syphoning life from the source of life. The largest one was six by five centimeters. And since, like most of us, I don’t deal in the metric system, this meant absolutely nothing to me. I thought that if I let them alone, they’d leave me alone. Ha!

Once I finished graduate school, and landed regular employment, I could make my health a real priority, which is what I did. I found a doctor at Kaiser. My fibroids were bigger if not quite big enough, at that point, that I felt the urgency to act. I was sent for another ultra sound to see what was going on. Note that by the time I had surgery, there were eleven fibroids altogether. I wish I were joking about that number, but apparently, the twins had twins. The largest two were the early ones that plagued me for years. I began in earnest to research possible treatments and to try at-home remedies. Unfortunately, none of the latter worked. I started my process by getting a deep understanding of fibroids. It’s how I process things: I intellectualize them. They became a course of study.

While the treatments vary, hysterectomy should really be a last resort unless there are some other pressing circumstances mitigating your decision. After all, it’s 2013, and there are numerous advances in medicine. Typically, treatments range from hormone therapy to full-on organ removal. I considered several options before undergoing laparoscopic myomectomy, a fabulous, minimally invasive procedure that is quite intense; I needed a month off from work to convalesce.

Before settling on this treatment option, I read blogs written by women who had tried the different procedures. I even tried hemp-seed oil therapy after watching a series of videos about its benefits. I’m sure that as an anti-inflammatory agent it does have some benefits, but I was apparently well past reaping neigh a one.  And, the oil itself is expensive. Hemp oil also gave me acne. I next turned to the fascinating research coming from Europe, such as UTE and hormone therapy.

UTE, or Uterine Fibroid Embolization sometimes referred to as Uterine Artery Embolization (UAE) was one I seriously considered. Originally used as a pre-op procedure in French hospitals to reduce bleeding during surgery, it was found than in 40% of women, the UTE alone reduced the size of the fibroids enough to eliminate the need for surgery altogether. The doctor injects an artery leading to the uterus with micro-pellets that permanently block the blood vessel, and thereby, starve the fibroid. A woman has to sign a contract saying that she will not attempt to get pregnant after this procedure. There a lots of scary things about having tiny plastic parts injected into one’s body.

We found the risks were much too high.

The more I learned about hormone therapy, the more frightened I became. From what I read, it was ostensibly chemotherapy treatment for non-cancerous growths. Our bodies are not designed to tolerate such chemicals, and I believe we do so in order to save our lives when fighting aggressive cancerous growths. To me, as miserable I was, fibroids were not life threatening. In fact, if they had been life threatening, simply removing the uterus would most likely be the most effective course of treatment. With this in mind, I read several blogs written by women who had submitted to this chemo for fibroids; they didn’t recommend it. One wrote that she had no idea what was signing up for. She advised readers to run. I did.

With the right doctor, laparoscopic myomectomy can be great solution to this devastating problem. Using four small incisions in the abdominal cavity, everything is removed through tubes after being cut into small pieces. Everything gets mapped out in advance using CAT Scan images. The result of this procedure is minimal scarring; there is also less pain and tissue trauma. Some damage can occur during surgery, such as tearing or puncturing of bladder or intestines; doctors can take precautions and repair these quickly, before one leaves the operating table. As a bonus, some women can regain normal bladder function after this procedure, depending on the cause.

Not every woman needs surgical intervention. My sister had one the size of a grapefruit during her pregnancy. It hurt, but it didn’t cause any problems. In my case, I had so many that my uterus was literally deformed. In retrospect, I wish I had undergone the treatment when there were only two fibroids. Still, the other nine might have been emboldened. We can’t know the mysteries at work in our bodies. We must simply be able to listen to its rhythm and dance its dance.

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!