Endometriosis Surprise and Awareness

I am usually do not make of light of having illness or health condition to share with you. And yet, my story may interest you and appreciate the little quirks that life offers us.

Last fall of 2021, I was assigned to teach an Introduction to Sociology class for the first time in my career that would take place in the physical classroom during the pandemic. Both students and myself needed to wear our masks for this juncture to occur. During the latter half of the semester, I noticed that several of my students were out sick and had to take COVID tests before coming back to class. At this time, a stomach bus was infecting many of my students.

I was grateful that none of them was COVID positive. I was hoping that I would not catch this bug. Well, I was wrong. During Thanksgiving, I was nauseous, had severe pains in my lower right abdomen, and in both of my kidneys. Ouch! I needed medical attention as I was diagnosed with a UTI and given antibiotics for a few days. I tested negative for COVID as well. However, the doctor did not address the severe abdomen pain in my lower right flank.

A few days later, I whined and hollered as the pain in my right flank still ached. I visited the doctor during that week as she felt the bloating and swelling in my abdomen. She ordered a CAT scan that was originally denied as it was not deemed urgent but later appealed and scheduled after the holidays. The following week I went for my annual exam as my doctor did not perform a pelvic test on me as she wanted to wait for the CAT scan results. Please note I have not had a pelvic exam since 2014 as I had a partial hysterectomy the year before as my ovaries were still intact moving forward. “If you are bleeding, call me, and I will see you for that condition” were the words of wisdom I heard from my from my primary care physician until she left in 2021. A new (primary care physician) doctor followed her protocol as well.

Well, the CAT came and gone in early January. When I read these results on My Chart on a Friday night, I panicked as the Radiologist referred me to have a MRI and to see a GYN Oncologist right away. I was completely besides myself as my legs could not stop shaking from the intense anxiety I endured after reading this report. Large buckets of tears streamed down my face as I called my father to tell him the shocking news after I shared this with spouse. My primary care physician did follow up with me that evening to not calm me but to refer me for an immediate MRI. Apparently, the CAT scan identified the large mass of ten centimeters or 3 inch large but could not tell if it was malignant or benign. My PCP was worried as she stated, “I wish I knew six months ago.” Her non-soothing words rattled my bones as I asked her if I had cancer or not. She could not diagnose further until the MRI was done. I was miffed as I realized she dropped the ball when she did not push for an urgent CAT scan appointment in December.

A week later, my PCP referred me to the GYN-Oncologist. My nerves were frayed as I was so scared of the inevitable “C” word” that I would be diagnosed with. I met with the GYN who examined me and showed me the results of the CAT Scan. She surmised that I may have a dermoid cyst but was not conclusive it was benign or not. I received the good news that the mass did not spread to any of my other organs or tissues in my body. If I had cancer, it would be Stage I Ovarian Cancer. This possibility of having Stage I is OK news as the survival rate is 90% after five years after receiving five rounds of chemo. However, who wants chemo when the side effects can further damage my body in other ways. I took the high road to be positive and compassionate to myself. I had wonderful support from my spouse, family, colleagues, and friends.

The MRI confirmed the mass on my right ovary as being benign but the GYN said that until she performs the surgical procedure, nothing is 100% certain until the day of surgery. I also had endometriosis in which my primary care physician failed to conduct yearly pelvic exams after 2014 to find any potential problems after my partial hysterectomy.

I never thought I would have surgery during the pandemic and be COVID positive a week later as well. I am blessed I had no symptoms on the big day on February 1st. My surgery was not elective as the large size of the mass had to come out before it becomes cancerous. I was the last one to check in on the day of surgery and the last one to be in the recovery room during the evening hours. Both ovaries were removed and NO CANCER was found. Best news of the day! Of course, I could not pee as the dreaded anesthesia paralyzed those nerve endings 24-hours later.

Eventually, I was able to relieve myself again later that day and eating better that evening. The next day, I felt considerably lonely as I no longer needed care by the nurse and doctors. No visitors were allowed under COVID protocols. My cell phone served as my main connection to text my spouse and to my close friends. My father did call me the night before to check in. Fortunately, I was released later that day to begin my recovery at home for five weeks.

Five weeks later, I was cleared by my doctor to return to work next week. She told me that large mass on my right ovary was composed of endometrial tissues surrounded by adhesions from past surgeries over the years. The left ovary had benign tissue unrelated to the right ovary tissue. The traumatic experience of having urgent surgery is behind me. It hit me like a bag of rocks of experiencing shock, anger, depression, anxiety and final acceptance that these drama is finally over with. Time to start anew and being more in-tuned with my bodily symptoms and being my own healthcare advocate.

What are the lessons to share:

1. The research is mixed on how primary care doctors move forward with women having hysterectomies. If you had a history of cancer prior to menopause and are in remission or had past serious problems, I gather your primary care physician may refer you for yearly check-ups with a GYN.
2. There are no preventive tests for ovarian cancer. In the 21st Century, researchers had yet found a way to test for ovarian cancer before it begins.
3. Current research states that symptoms of bloating and swelling in your abdomen may or may not be a sign ovarian cancer. Please see your doctor for guidance and information.
4. Endometriosis does not necessarily disappear when a woman goes through menopause. Some doctors, feel otherwise, of having you follow up with your GYN once a year for a pelvic exam.
5. You have to be your own healthcare advocate. It is up to you to be in-tuned with your body when it is not feeling well or when your gut tells you otherwise.