Each patient carries his own doctor inside him. They come to us not knowing that truth. We are at our best when we give the doctor who resides within each patient a chance to go to work.
Dr. Albert Schweitzer
It was with mixed emotions I viewed around 20 slides of my surgery documenting almost 30 areas excised and showing lesions ranging from my diaphragm to my rectum. Some were large masses and others ran the length of my ureter as if preparing to invade even further. As graphic as it was it may have been one of the most healing experiences of this whole journey. There in color, on a screen in front of me, was a visualization of what no one else had seen for three years.
There were four amazing surgeons for the four hour-surgery. I had four sets of internal stitches but thankfully did not need any type of bowel or colon resection. Maybe four is my new lucky number. If I had not had this surgery, the endometriosis would have progressed. Diabetes was the next anticipated diagnosis to top off the hypertension and hypothyroidism I developed in the last three years. An obstructed bowel or further breathing issues would follow. And certainly, pain and more pain.
As I sat watching image after image, I sent energy and healing to the thousands of women who are not being heard and have no answers for their pain or their cascade of inflammatory diseases. I took a deep breath in and out to acknowledge my privilege in being in that moment. I held in my heart the Women, especially Black, Indigenous and Trans Folx who are significantly less likely to be heard and even more likely to be gaslighted, and therefore more harmed by our healthcare system. I cried with grief, anger, relief and gratitude.
Here are a few of the things told to me over the past three years . . .
After my hysterectomy my blood pressure got better and then worse. I was advised by my doctor to have my home blood pressure monitor checked and, if necessary, recalibrated. I brought it in and was told “Well, you can’t get any closer than that. It’s accurate.” The next week I messaged that my blood pressure was still high, and it was concerning me. The office called me back and said the doctor wanted me to come in with my monitor to check it.
Anytime I brought up feeling heavy, jabs of hip pain and unexplainable weight gain: “Yeah, getting old sucks [insert provider’s personal story of aging and weight gain].”
So, I stopped talking about those things, my symptoms grew and the disease progressed, leading me to . . .
At an appointment I requested when my blood pressure continued to spike cyclically even on medication: “When you are here your blood pressure is perfect. Why do you think that is?” [My blood pressure was not perfect in the office.]
“You can’t get endometriosis on your colon . . . next option is hemorrhoid surgery and that’s painful” [pats me on the shoulder and leaves the room].
From a specialist I waited 6 weeks to see: “Those aren’t symptoms of endometriosis.” They were all symptoms of deep infiltrating endometriosis.
So, I continued listening to my body and doing my own research.
I developed a clear picture of the systemic and progressive impact of endometriosis within my body. The puzzle pieces came together and it all made sense. I shared an article written by Dr. Seckin with one of my providers, hopeful and elated as it described ME. I had a path. Someone knew and there was information on how to move forward.
My next appointment with that provider: “I think you heard something . . . and you are creating a self-fulfilling prophecy.” That’s when I stopped and allowed myself to let go of what these healthcare providers couldn’t do – admit they did not know.
There is nothing wrong with not knowing. In fact, I’ve come to see what a strength and skill it is. If we cannot admit we do not know, we also cannot be curious. Without curiosity, there is no art to balance the science of medicine. There is no pathway to discovering or even seeing what lays before us – the doctors and healers within each of us.
I am incredibly grateful to have found surgeons who indeed do listen for the doctor within. Dr. Chu, Dr. Goldstein, Dr. Martz and Dr. Seckin never once questioned me, challenged my experience or dismissed a thing I said. I smiled when Dr. Seckin visited my room after surgery and he said, “this organ from here to here is very complicated [indicating my entire abdominal area]. If I don’t listen to you we have no idea whether what we are doing is going to be helpful.” Thank you for listening.