by Jillian Bogater (Exile From Hysteria)
My run with female trouble spans a couple of decades.
Looking back, I see 20 years of missed opportunities. Because endometriosis is difficult to diagnose, and its symptoms mysteriously mimic other diseases or simply refuse to show up on scans, I learned to silently endure the growing pain. Endless tests showed nothing. I was losing hope. I told myself I was stronger than the pulling sensation deep in my belly, that I could will the pain away. And I made it work … until a couple weeks ago.
Lost in prayer
I first was aware that something was awry sometime in my early 20s. I had developed a deep cramp in my lower right abdomen. I tried self-massage, laying on my belly, laying on my back, pushing my fist directly into the pain … nothing stopped the burning ache.
Finally, late one night when I could not stand the pain a moment longer, I drove myself to the hospital. A doctor in the ER palpated my belly, and said he felt a large mass in my abdomen. He asked if my family had a history of intestinal cancer. I said no, but I had no idea. My family didn’t really talk about heirloom ailments.
I was given orders for an abdominal CT scan, and a lower GI. I returned a couple days later for the day of testing. My family all prayed to Father Solanus Casey, a late Catholic priest known for curing sick people who also was under consideration at the time for sainthood.
When the tests returned, doctors told me they found nothing. That the mass had mysteriously disappeared. My family rejoiced and praised Father Solanus. I wondered what had just happened, because the pain in my abdomen continued to burn.
From an early age, I have a history of dealing with doctors who did not believe my pain. When I was in elementary school, I began experiencing chronic stomach aches that continued into high school. I endured enemas and scans and blood work, only to be told by doctors that they could not find a medical cause for my pain. I was referred for counseling. The confusion was so overwhelming. The pain terrified me, and the doctors who I had no choice but to trust told me it was all in my head. As an adult I came to identify those stomach aches as panic attacks, but I never lost my distrust of the medical establishment.
After having laparoscopy surgery five years ago to finally diagnose my endometriosis, my sense of distrust was reinforced. As a followup I went to a specialist because the initial surgery did not get all of the endometriosis. After waiting for 45 minutes, I finally saw the surgeon. For about two minutes. Just long enough for him to tell me I was not a candidate for surgery, that I should just learn to deal with the pain. He simply would not help me.
I burst into tears. Begged him to stay, to please cut me open and take out the pesky endo wrapped dangerously around an artery. He walked out of the exam room, and never came back.
I was devastated. I choked down my tears, and by the time I got to my car, I vowed not to talk of it again. And I didn’t. I never told my gynecologist, my therapist, not even my boyfriend. I became a dutiful soldier, and suffered in silence. I learned to embrace the pain, to modify movement, to avoid activities that required too much walking or standing. I was slowly losing myself to this monster growing within me.
So a week from today, Matt and I meet with the gynecologist to set up my hysterectomy surgery … and I have a real fear she’ll tell me nothing is wrong. That after finally deciding to tell my family and close friends, all of this will all blow up in my face as an overreaction.
So I check my notes. Reassure myself by remembering conversations with my gynecologist. With the nurse. I trace the line of pain from under my right ribcage down deep into my abdomen. Of course this all flies in the face of everything the doctor already has told me. That indeed, I am sick.
Im learning to unwrap the fear, to embrace the pain, to accept the cards dealt to me as not an illusion … but a cold hard truth.
Possibly for the first time in my life.