I wasn’t going to write about how this all started—it seemed irrelevant. Then I was asked about my symptoms by a friend because she was experiencing symptoms similar to mine. However, this prologue is about more than just the symptoms—it’s the entire experience with the medical field leading up to diagnosis. I don’t know if this will help any other women or not, but here is what I know to be true about my circumstances. If you don’t want to read all the way through, I’ll bullet point my specific symptoms and thoughts at the end.
In 2013, my heavy periods became increasingly heavier. Given my age (45), this seemed appropriate. My uterus was doing its job and preparing my body for menopause. No one thought otherwise. Sure, I had some abnormal paps, caused by HPV, but not the HPV that causes cervical cancer.
In 2015, my gynecologist at one facility wanted to do a colposcopy because of some abnormal cells were found. She was quick to say in her email that the cells were not cancer. She didn’t even suggest they were pre-cancerous. I scheduled, rescheduled around my menses, rescheduled around a medical emergency she had, tried to schedule again, but by then she left the organization. I gave up and knew I was changing medical insurance anyway, so I didn’t worry about it.
In late 2016, I started becoming increasingly fatigued, to the point that by February 2017, I was scheduling a doctor’s appointment. Unfortunately, I couldn’t be seen for an annual checkup until April. So, in mid-February, I stopped by the doctor’s office to drop off my new patient paperwork and to see if I could be seen sooner—I was barely able to function. My primary care physician (PCP) wasn’t available, so I opted to see the nurse practitioner a few days later. When I described my symptoms, she thought it was likely my thyroid, and ordered a full panel. There were no concerns about my periods. A day later and two hours after I went to the lab for my blood work, I was called by a now slightly panicked nurse practitioner, who told me,“there really was something wrong with me,” and that my hematocrit and hemoglobin were too low. She sent me to the emergency room. From there, my blood was tested again, and I had a stool sample tested, as well as an abdominal sonogram and vaginal ultrasound. The only thing found was a thick lining of the uterus. I moved forward with my two-unit blood transfusion and it was recommended to have my endometrial lining biopsied. My pap in April came back negative, but my PCP wanted me to have a colposcopy, along with the other biopsy. I was referred to a gynecologist for both of the aforementioned procedures. However, this doctor’s main concern was my anemia and bleeding, so she recommended an endometrial ablation to stop or slow down my periods. She was less concerned with the biopsies.
From there, it took months to schedule the ablation. The surgery scheduler would call with one date, which inevitably didn’t work with my schedule or my cycle. I was told I’d be called back within three or four days with a new date, then I’d never get a call. So, I called a week or two later. And on and on. My PCP suggested I ask about the anesthesia and whether or not the procedure needed to be scheduled around my cycle. The periods weren’t an issue, but the anesthesia was and I was trying to schedule around work. And then I got tired of the phone tag and lack of responsiveness. I gave up for a while. And then the fires happened in October. By then, I was over having heavy periods and always needing to wear a pad. And then I lost two of my staff in early December.
Finally, on 27 February 2018, I went in for the ablation, and two days later I was diagnosed with cancer.
Here were my symptoms, prior to diagnosis:
- Heavy periods for at least one to two days. Sometimes changing thick pads a couple times an hour, sometimes a little less often. The entire period would last around 8 days.
- Cycles where I would go through about 20+ pads over the course of two to three days.
- Spotting between periods over the last year or so.
- Sloughed pieces of tissue that were not endometrial lining.
- A few skipped periods.
- A watery-bloody discharge between periods, starting November 2017 or so (this is a definite symptom of uterine cancer).
- Anemia (to the point of needing a blood transfusion)
- Over-production of estrogen (although I didn’t know this was happening or was a symptom)
Not one medical professional, over the course of five years, suggested I have my hormone levels checked or told me that abnormally heavy periods are caused by excess estrogen, and excess estrogen causes cancer. Now I know.
If you are exhibiting these symptoms as a perimenopausal woman, and you are ignored or are getting blow-back from your doctor, push for hormone tests and biopsies anyway. Bleeding after the onset of menopause is abnormal, so cancer is usually caught sooner. If your doctor isn’t concerned, make sure she/he is.
The reason I shared the entire story was to help other women understand how long it took to get my needs met, and that my symptoms, albeit not entirely ignored, didn’t concern enough doctors. If I had pushed harder and been seen sooner, I may have been in the pre-cancerous stage, or early cancer stage. Instead, I have had a radical hysterectomy, and will most likely be undergoing both chemotherapy and radiation, with treatment starting soon. My chance of recurrence without treatment is 25%. If any of this helps one woman under the age of 55 (or over, if need be) get diagnosed early, then all of this will have been worth it.