Functioning with Fibroids

Leiomyomas. Myomas.

The Latin, medical, or scientific term for uterine fibroids. Little did I know, these words would be much more.

What are fibroids? Cause? Symptoms?

Medically speaking, fibroids are noncancerous (benign) tumors that grow within a woman's uterus. They can also grow around or outside of the uterus. According to Medline, the growth of fibroids before the age of 20 is rare (I must be a unicorn), they occur most commonly in black women, & the exact cause of them is unknown.

Symptoms of uterine fibroids include:

• heavy bleeding between or during your periods that includes blood clots
• pain in the pelvis or lower back
• increased menstrual cramping
• increased urination
• pain during intercourse
• menstruation that lasts longer than usual
• pressure or fullness in your lower abdomen
• swelling or enlargement of the abdomen

Okay, I'm not here to bore you with a medical lesson or give a crash course in women's health, but I felt as if a brief background was necessary to further provide the opportunity for you to understand this vulnerable & transparent moment with me. I have told a brief moment of my story in a previous post, but so much more has occurred since then.

My fibroid journey began in 2011 when I discovered I was pregnant with my son at the age of 19. During that time, my fibroids were about the size of a pin head, unbothersome, & the findings were incidental during an ultrasound. No one told me what my future would hold.

After having my son, & being a single mother, I decided that I didn’t want any more children. I saw no issue with that decision because I always assumed that if I wanted another child, I could have one. (This is why you shouldn’t assume).

I had been told by my gynecologist to "not bother the fibroids if they weren't bothering me." Well, initially they were a problem. I had grown used to long heavy periods, exhaustion, acne, headaches, stubborn acne, menstrual cramps similar to labor pains.

My condition & issue became more complex in 2018 when I became unexpectedly deathly ill with the flu, & my uterus grew to the size of a pregnant woman. Granite, the fibroids were only about the size of a uterus in the 1st trimester, the point is they grew. The hospital was so certain that I was pregnant. After multiple negative pregnancy tests, both urine & blood, it was found that there was growth in size in my fibroids. This explained my slowly worsening condition.

Between 2018 & now, my uterus grew to the size of a woman that’s 20 weeks pregnant — but, there’s no baby. My symptoms have rapidly exacerbated. The fibroids have compressed my femoral artery & has given me “pregnant legs.” My feet are swollen to my knees. Heavy periods lower my hemoglobin resulting in mild anemia. I'm consistently exhausted. My lower back throbs, my hips are heavy, & I'm altogether miserable. My acid reflux is constant. I am in the bathroom urinating almost every hour even though I never feel like my bladder is empty, & somewhere along the way I’ve managed to develop a case of hydronephrosis (kidney diagnosis) which is ultimately a results of my urine being unable to flow due to the fibroid obstruction. I've developed chronic constipation. I've had multiple trips to the ER.

I'll never forget the doctor in the emergency department that looked me in the face without any expression to discuss my diagnostic imaging results. His exact words were, "you need a hysterectomy. It's not emergent, so I won't wheel you to the OR now, but it's urgent."

I was only 28. I cried, but remained hopeful. I mean, how did the ER attending physician know what I needed? He had never seen me a day in his life. Because of my dislike for the doctor's reality check, I began seeking a second opinion--& my body continued to wage war against itself as my symptoms progressed.

My journey to finding a doctor that would tell me what I wanted to hear began. My primary care physician worked diligently to find a OBGYN that could preserve my uterus. I had no idea what kind of disappointment I would be in for.

No physicians really wanted to treat me because my case was so complex. The complexity wasn't the fibroids, but rather my desire to preserve my uterus with the size of the growths. Oh yeah, the incidental finding of the colorectal mass didn't help. Each physician had their choice of treatment, & none of them were the same.

Treatment Options?

After visiting several GYNs, including an oncology GYN, there were 4 treatment options:

1. Myomectomy (surgical removal of the fibroids & preserving the uterus)
2. Uterine fibroid embolization (blocking the direct blood flow to the fibroids)
3. Oriahnn (a new medication created to treat symptoms of fibroids)
4. Hysterectomy (removal of my uterus, either partial or total)

I was uncomfortable taking the medication since it was new to the pharmaceutical market. I tossed around the idea of the myomectomy & embolizations, but an intolerance to anesthesia makes it difficult to choose which surgery to agree to.

Time lapsed. It had been a year, & I hadn't made up my mind. For a brief moment, I was unable to focus on my health because my son was diagnosed with obstructive sleep apea, & had complications from a routine surgery (tonsillectomy and adenoidectomy).

Fast forward to 2022, & after hundreds of dollars wasted & unneccesary time at work, I finally got an appointment to see my previous GYN.

By the time I reached him, I had heard the term “hysterectomy” more times than I would like to admit. I still cringe every time I hear it.

After much physical suffering, I was inadvertently forced to make a decision. It wasn't until my recent appointment that I was informed that the size of my fibroids were too big to schedule surgery at this time without complications or a long ugly scar directly up the center of my abdomen. I had waited too long, & lost the advantage of the other options. A myomectomy would result in a nonfunctioning uterus because of the amount it would have to be "cut up." The embolization was still an option, but it would only shrink the size of the fibroids I have now, not prevent others for growing. I had to choose the only options I had left. I had to get a hysterectomy.

Grief & Hysterectomy

Every physician warned me about the physical symptoms I would have as the fibroids grew, but no one prepared me for the emotional trauma & psychological response that would come with it.

As I prepare for the upcoming surgery, I have begun the stages of grief. I slide back & forth between stages, so I have no idea where I am at this point. This process has been not only a matter of the head, but also a matter of the heart. I cry often. I cry for my body. I cry for my husband that wanted a child with me. I cry for the baby I know I'll never conceive. I had to face the fact that a part of me is dying. Coincidentally, the part of me that is dying also happens to be the part of me that gives life. Would this make me less of a woman? Did I let my husband down? The impending loss of fertility further fuels my emotions. A single surgical incision scar will be the only proof that I have that I used to be a woman.

I have grown used to the pain, the bleeding, & the pelvic pressure. What I haven't grown used to is low self-esteem related to excessive & rapid weight gain. I haven't grown used to the fact that my clothes literally began bursting at the seams. People have no problem telling me how "big" I have gotten. Anxiety & depression that accompany these remarks because none of this is my fault. I have't grown used to lack of interest in activities because my lungs have been incapitated by my large uterus. I haven't grown used to the questions of when I was "expecting" comment or the constant "are you pregnant?"questions.

I feel like I'm drowning in sorrow. My body is rejecting me.

I haven't grown used to living my life with limits.

My life has changed drastically rather quickly. I’ve had to deal with the pain they had been causing, the heavy periods, the rapid weight gain, but ultimately — the inability to conceive.

Over the course of the years, I have learned how to "function," not well, but just enough to get by.

Dislaimer: Let me begin by saying, in no means (at all), am I writing this to gain sympathy, but rather to spread awareness.

If you like this story or would like to support me, feel free to buy me a coffee.