I was post-menopausal and wasn’t expericing any symptoms indicating anything was wrong when I decided to participate in a clinical trial that had nothing to do with my uterus. Part of the clinical trial, which I had expected to be no big deal, involved getting an MRI of my abdomen. They discovered a large fibroid. I was taken into a room where I was told I could not continue with the trial and not to worry about cancer because fibroids have a very distinct shape and mine looked very typical.
The trial had not been done through my HMO so I had further images done through my doctor and discovered that although there were no other masses, one of my lymph nodes was slightly enlarged so I was sent to oncology.
The first doctor I saw said that I had a benign mass and needed minimally invasive surgery and said she would send me to a colleague. Her colleague told me I had a 50% chance of having terminal cancer and that he would likely remove my uterus, cervix, ovaries, gall bladder, my spleen and my entire colon so I should prepare for life with a colostomy and an external bag. I was so afraid that I asked my primary care doctor for sedatives.
My husband sent my scans to a friend of his who was an oncologist at a nearby medical school. He said he was sure I had a benign fibroid. The surgery had been scheduled, yet I requested a third opinion. I had been told that you cannot biopsy fibroids and had a biopsy through my cervix. The biopsy came out negative, but the doctor could not guarantee that the whole fibroid was benign. (I always called it a “fibroid;” the dcotor called it a “mass.")
At this point It was not clear to me that I needed surgery, but my primary care physician kept pressuring me, so finally I had the procedure. I had surgery just before the pandemic. I did indeed have a benign fibroid. I have a large keloid scar from my pubic bone to the bottom of my rib cage. I recovered fast from the surgery in that my incision closed fast, and I got my energy back fast.
But I developed an antibiotic urinary tract infection from being catheterized after the surgery and developed severe pain in my vagina, which lasted 13 months. It has only recently gone away. I was convinced for months that I would never again have a sex life and would never travel or have a normal existence because of the constant pain.
I got some help from my primary care physician, but it was minimal because of the pandemic. I couldn’t go back to the clinic where I had the surgery because I am not a cancer patient, and they only deal with cancer patients. I curse the day I entered the clinical trial where they found the fibroid.
What three adjectives best describe you?
Loving, empathetic, concerned
What is your greatest achievement?
I got a PhD In education and taught at the college level. I was the professor that students with problems came to for help because I cared.
What is your greatest regret?
I regret my PhD advisor.
What is the best advice you ever received?
Marry the smartest man you know.
What drives you to do what you do?
I want to make the world a better place and make other people feel cared for.
What is your motto?
I don’t have one. But if I did it would have to do with caring for others.
If you had to evacuate your house immediately, what is the one thing you would grab on the way out?
My dogs and after that my guitar.
If you could be any animal, what would you be? And why?
One of my dogs, because my husband I l love them so much
Together, our stories of survival can make a difference. When people living with and impacted by a disease or health condition share how they dealt with it, they inspire others and break down the shame, silence and stigma surrounding the condition.
If you have uterine fibroids, Real Health wants to hear how you are dealing with this health condition. Please click here to share your story.