A Fibroid Story

Photo by Jazmin Quaynor on Unsplash

WARNING: This post is not for the squeamish.

I turned 40 this year. While most of my peers have long ended their relationship with diapers or are beginning their second go round with them (Yes, I have friends who are grandparents already!), I bought my first pack last week. Nope, not Huggies or Luvs or Pampers…but Always. Always Discreet. For myself.

While it is part embarrassing and part humbling, I am sharing my story because if statistics are correct, there are countless other women in my age range who also suffer from urinary incontinence.

For some, it is due to pelvic floor disorders and for others, it is a result of childbirth. I do not have a pelvic floor disorder nor have I ever given birth.

I am simply among the 80% of African American women who have or will develop uterine fibroids at some point in their lives.

Uterine fibroids are growths on or around the uterus that appear during a woman’s childbearing years. According to the Centers for Disease Control and Prevention, uterine fibroids are the most common non-cancerous tumors in women.

In addition to heavy bleeding, irregular periods, and a distended abdomen, uterine fibroids can also increase a woman’s risk for stress incontinence, which is leakage that happens when coughing, laughing, or sneezing. This is the type that I have, resulting from a fibroid that is sitting directly on top of my bladder. For the past several weeks, any fit of laughter, coughing, or sneezing has sent me running for the nearest bathroom, most times too late. I have changed and washed urine-soaked underwear more times than I can count in the past few weeks.

I was first diagnosed with uterine fibroids during an unrelated emergency room abdominal CAT scan in my early 20s. The CAT scan revealed that there were three fibroids on the outside of my uterus, near the area in which my uterus and fallopian tubes connect.

I have a family history of fibroids (mother, grandmother, aunts, etc.) so I was loosely familiar with them. Immediately following my diagnosis, I made an appointment with my gynecologist who assured me that “as long as they are leaving you alone, you can leave them alone.” Because I was not having issues at the time and would not have otherwise even known that I had them, that is exactly what I did for the next four or five years…until they were no longer leaving me alone.

During the summer of 2009, while on a solo road trip to visit a friend, I experienced what I would describe as the sensation of urinating on myself. As is customary for most people when taking a long car ride, I emptied my bladder and limited my liquid intake…so when I felt this odd, warm sensation an hour and a half into my drive, I was perplexed…and frightened.

I was certainly too young to be losing control of my bladder, wasn’t I?

Because I was still an hour or more away from my destination and in the middle of nowhere, I decided that I would keep driving, damp pants and all, until I arrived in my friend’s town. We were planning to meet at an event so I would have to find somewhere to stop once in town.

Even though this was a friend with whom I shared almost everything, all I kept thinking was how I would explain that I, a healthy 30 year-old woman, had peed on myself on the road? If I wasn’t so disturbed by it, it may have been funny.

After arriving in her small college town, I stopped at the local university and situated myself in the stall of the first restroom I saw inside the student union. To say that I was unprepared for what I was about to see is an understatement. As I looked down, looking back up at me was a blood clot the size of a small newborn. WTF?! Although I was not sexually active at the time, the first thought that came to mind was “Am I or was I pregnant?” “Did I just miscarry?” I mean, this thing had to be a developing fetus.

The shock of it all set in and a million other thoughts began to flood my mind as tears began to flood my face. What the f*ck is happening to my body?  Do I need to call my doctor? Better yet, should I go to the hospital? Nothing about what I felt and saw made sense. Nonetheless, I gathered myself, called my friend, went to her house, changed clothes, and went to the event as if nothing happened. I followed up with my gynecologist and after a series of prodding, poking, ultrasounds with jelly, wands, and condoms, and more prodding and poking, I was armed with all the information I needed to make a decision about my next steps.

Twelve weeks later I had a myomectomy, a very invasive abdominal surgery that required a six to eight-week recovery period. Although there were other options available for fibroid removal, I selected this option because it was the only procedure that would allow me to preserve my fertility. Because I was only thirty years old at the time, I figured I would still want children someday. After a four-hour long procedure and a three-day inpatient stay, I walked out of the hospital four fibroids lighter, ready to begin the rest of my life. It was like a weight had been lifted off me.

Little did I know, this was only the beginning of what would soon become my very complicated relationship with my uterus. 

Ten years post-surgery, the fibroids have returned with a vengeance. I have extremely heavy periods that have caused me to become anemic. I pray every month that my period starts on a weekend, or at least a Friday, so that I am able to be the prisoner to my home that such heavy bleeding requires. During the months in which that is not the case, I am forced to call in “sick”, even though for the most part, I “feel” ok. I just can’t handle having another “accident” in public, as I can’t count the number of times I have quietly and (mostly) inconspicuously slipped out of a meeting or event because this has happened. Most months it takes everything in me to maintain my sanity as I anticipate what it will be like “this time”. Something has to give.

Although I still have not had children, I know that I will not be having another myomectomy. It is just too invasive and the recovery period is too long. I know that I don’t want a hysterectomy either. I know someone who recently had one, for the same reason, and she struggles with her inability to have children. For the most part, I have accepted that it is unlikely that I will ever give birth.

Nonetheless, there is a difference between feeling like you’re choosing not to do something and not being able to do something…and I am not sure that I am mentally strong enough to handle the latter.

I plan to have a minimally invasive procedure this time, even if it decreases (but does not completely obliterate) my chances of ever conceiving.

So here I am, a week away from a consultation with a new gynecologist (I relocated since the last surgery), trying to maintain a positive outlook. As women, we are told to put on our big girl panties when faced with life’s challenges…and that’s exactly what I’m going to do. That is, as long as these Always Discreet Underwear count as big girl panties. I would hate to pee on myself when I can no longer bear the weight of this situation and  the ugly, convulsive, cathartic cry that I have been holding in finally comes pouring out.

On the bright side, at least they’re kinda cute. Ish.