It Wasn't Just Menstrual Cramps
In late spring of 2019, I knew something was up. I was experiencing what I thought were heavy periods and spotting along with fatigue and just constant discomfort that ranged from abdominal, to lower back, to even intravaginal. I felt not myself and I needed answers.
Raising my concerns with my gynecologist
I was due for my annual well women’s visit with my gynecologist in May, and in preparation, I made a lengthy list of symptoms, concerns, and even dates of particularly bad days. When my gynecologist walked into the room, I laid it all out for her. However, I almost immediately noticed she wasn’t understanding how serious this was to me and how much my life was being affected. She was taking no notes and asking few questions. During my exam, she did mention how I did not have discomfort while being examined last year and that I seemed “tighter.”
Tests with limited parameters
She ordered a vaginal swab, asked for a urine sample, and had the lab draw blood. Sadly, these tests were done with limited parameters, only checking for vaginal infection or UTI, and the blood draw was only run through a thyroid test (my mother has thyroid cancer). She also scheduled an ultrasound for August 2nd, a full 2 months later.
Ending up in the ER with a large bladder tumor
I left that appointment with a diagnosis of vaginal cramping and could have physical therapy to fix it. Sadly, I ended up in the ER 4 weeks later in severe pain, anemic, with a grapefruit-sized mass in my bladder, knocking on death’s door. This gynecologist did end up seeing me briefly in the hospital as her office was part of the same hospital system, and she still was adamant it couldn’t be bladder cancer.
Proper testing might have found the problem earlier
When I later got a copy of all my medical records, I saw how limited her testing was during my appointment in May. If she had just done a general urine analysis, they would have found the blood. If a very generic blood panel had been done, my oncologist is positive my low hemoglobin, non-existent iron, and my unbelievably high white count would have been found immediately. We actually know now that the thyroid test should have triggered further testing as the numbers were not within normal ranges.
Misdiagnosed with vaginal cramps
I sat with that doctor for hours. She was well familiar with my family’s cancer history. I was in near tears explaining all these things that were wrong with me. Yet, because I was a 28-year-old woman, I was diagnosed with heavy periods and vaginal cramps. Why she ordered an ultrasound 2 months later and did not have the lab perform basic tests, I will never understand. My oncologist and surgeon both have agreed that she would have not only seen but felt my tumor during my exam.
I wish I could have avoided some of the stress and pain
I know that my cancer being found in May would not have changed much of my eventual diagnosis, but it could have prevented some of the pain and need for emergency procedures. I also feel it could have prevented the 2-week long stay in the hospital while 3 surgeons argued over what kind of cancer I had. This is why I share my story and try to educate others on the signs and symptoms of bladder cancer. If I had been more educated, I would have known it wasn’t just menstrual cramps.
Have you felt misunderstood as a person living with bladder cancer?