then and now
By: Andrea "Dre" Litzhoff
Revealing my story is a gift, so I have to thank The Endotwins and Ms. Fela for letting me divulge. We sisters share and share and share, and we have to in order to understand what our bodies conceal. If it weren’t for the Internet, I have no idea how lost and abandoned I would be. If you are reading this and are in pain, I am sorry that you have to bear the immensity of your own disease. Writing this, I will try not to dwell on the familiar issues of physical and emotional pain, trauma, and systematic medical neglect at its finest. Ever the optimist, my goal is to give you a conceivable ounce of faith in what often feels like a hopeless journey.
As a young woman, brutal periods plagued my existence since puberty. Growing older, I never felt a strong connection between my menstrual cycle, reproductive organs, and my womanhood as a whole. Every month my moon blood grew more laborious and painful and heavy and long. Coupled with bra shopping and unwanted attention, I hated being a woman. Guilt helped me dismiss my feelings toward the traumas my body was inflicting upon itself. I was not going to use my menstrual cycle as an excuse to get out of gym class or athletic obligations. I thought to myself - Was I lying about how bad I felt? How are other female high schoolers so tough? Don’t they all feel light-headed in algebra class when they get their periods?
"If you get dumped or neglected because of your suspected or diagnosed endometriosis, think of it as a get out of jail free card. Brush off the people that do not love you to the ends of your soul. "
My menstrual cycle was a driving insecurity into my years as a college and graduate school student and young professional. I had to call in sick many times to class or work. One time in grad school, I stayed at home on the floor all day on my heating pad crouched in the fetal position crying and marveling at the horror of moving myself to use the bathroom or make myself something to eat. On these days of urgent self-preservation, I felt so guilty for missing my obligations. I would feel better tomorrow, and within 18 hours I would forget the monthly cyclical torture that I had just lived through. That was then.
Storms continued to brew in my romantic life. Consoling me after a break up, a friend wisely stated that I was certainly not the first woman to be dumped or neglected by a significant other because of endometriosis, and I certainly will not be the last. If you get dumped or neglected because of your suspected or diagnosed endometriosis, think of it as a get out of jail free card. Brush off the people that do not love you to the ends of your soul. Take that get out of jail free card and run to a place where you can put yourself and health needs first. The fly by night boyfriends will fade. In Cat’s Eye, Margaret Atwood advises to not ascribe intentions to men. She says,
“They were like the weather, they didn’t have a mind. They merely drenched you or struck you like lightning and moved on, mindless as blizzards. Or they were like rocks, a line of sharp slippery rocks with jagged edges. You could walk with care along between the rocks, picking your steps, and if you slipped you’d fall and cut yourself, but it was no use blaming the rocks.”
I fell many times on these rocks. Do not be surprised in the numerous and near persons who fail to understand you or try to understand your disease. Try not to stay mad or sad at any of the lost relationships. The stress and depression will progress your disease. You will survive all of them. The people you lose may never know a fraction of your strength and perseverance.
"I believe my body knew before my mind did that I needed a hysterectomy. The thought of being without my uterus gave me instant joy and exuberance."
When my pain grew to unknowable levels, I created a cocoon of protection in my studio apartment on my heating pad on my bed - the only place that did not hurt me physically, emotionally, or mentally. My senses deadened, mind slowed, and I would daily shut down into isolation after coming home from work. My studio apartment became my safety zone. If I stayed inside it, I could best prepare myself to portion out each single part of my day with my pain. I could only handle my external obligations only by methodizing and regulating my pain cycle while simultaneously balancing my current and predicted energy levels. I desired the love and life of my friends and family. But no matter how happy I felt in their presence, they could never do anything to alleviate my deadening pain. I will never be able to enunciate or generate words for the pain that drowned me. That was then.
By the beginning of 2017, I had ran through about 3 or 4 hospital systems in Chicagoland before I contacted the Center for Endometriosis Care (CEC) in Atlanta. I believe my body knew before my mind did that I needed a hysterectomy. The thought of being without my uterus gave me instant joy and exuberance. I began to perceive my upcoming hysterectomy as a method of cleansing of my past self, relationships, experiences, perspectives, outlooks, and pain. I saw my forthcoming procedure as a way to experience a regeneration and rebirth of a new me. This was to be a major milestone in my history. I questioned my renewal via hysterectomy. Could the removal of an organ actually give me a spiritual rebirth? Was I being realistic considering everyone has a past filled with faces, place, memories, and experiences? Wouldn’t my past come with me wherever I went regardless of what organs I have and what my wishes were? That was then.
"Roughly 20% of the time is a brutal recognition of what endometriosis has taken away from me, and the fears it has tattooed into my muscles and limbs. I cry. I grieve."
I was blessed by the generosity of my parents and many donors to receive the urgent care I needed for years at the CEC in Atlanta. On June 2, 2017, my unique presentations of endometriosis, its lysis, and adhesions was excised via LAPEX from my sigmoid colon, peritoneal walls, small intestine, colon, recto-vaginal, a bit on my diaphragm. I had Stage 2 Deep Infiltrating Endometriosis (DIE). Out of 1 of 10 women with endometriosis, bowel and colon endometriosis occurs in roughly 10% of patients. My abnormal appendix, fallopian tubes, and uterus were also removed (RIP in Hell ‘Black Demon Womb’ 1987-2017). I still have both of my ovaries and cervix. Whoop! Whoop! When I think about the CEC, one word comes to my mind - care.
As of September I am 3 months post-op. I am still recovering, and I expect that it will take me a 6 or more months to rehabilitate. I have to take it slowly day by day. I was restricted from lifting no more than 10 pounds for 2 months. I will always be an endosister, but now I am also a hystersister. Even though I am “endometriosis-free” via LAPEX, endometriosis can always come back. There is no cure for our disease.
My adenomyosis is 100% cured via a supracervical hysterectomy. Losing my uterus was a gift from God. No doctor, no parent, no friend, no endosister could have known what I needed to do for my long-term health - just me. Did I want a chance at my life first or did I want to remain subfertile? Women rights to their reproductive health systems are human rights. When I doubted myself, God did not. Never wavering, my doctor agreed with my decision, a rare professional. I woke up from surgery in God’s arms, saw my loving mom, and pressed my morphine pump like freedom’s bell.
True healing is non-linear. Recovery and rehabilitation do not unfold in a quick and easy route. Roughly 20% of the time is a brutal recognition of what endometriosis has taken away from me, and the fears it has tattooed into my muscles and limbs. I cry. I grieve. Endometriosis and adenomyosis violated my relationship to my own body. I have to learn to trust my body for the first time since puberty. Relaying my current challenges to my family is still difficult and establishing my voice is a balancing act.
Last month, I had the Nexplanon progesterone arm implant put in my arm. I could feel my ovaries ‘roid raging’ on estrogen, and wanted to dampen those hormones before I lost my health insurance. I laughed at this enormous irony - having to go on birth control after a hysterectomy. I have laughed my way through endometriosis. I laughed at how many different ways I could be penetrated in one day (4), and a notorious event referred to as Colonoscopygate 2017 (witnessed by one magical person). This is my life, and my life is a parody of a tragedy.
"When a hardship comes to me, it feels like a pebble stuck in my shoe. I take off my shoe, shake out the rock, and keep walking forward without looking back."
I bear witness to my progress in small achievements. For instance, one day I went to Mass and was able to sit, stand, and kneel from start to finish (I usually pooped out at the standing and sat back down). Without endo and adeno interrupting every facet of my being, I now see the ways in which I can heal myself. Maybe I can love this body.
I believe I am beginning to become my true self. My hysterectomy and excision surgery of endometriosis was the cleansing of my past that I had worked and prayed for during my three years of chronic, disabling pain. My true self is physically imperfect, but loved by God. My true self is selecting meaningful relationships; treasuring my parents; dreaming, breathing, meditating, reading and writing; eating healthier; taking in the present of each beautiful day; and trying to be a more supportive aunt, sister, and daughter. I can dance in my apartment, and go for walks in the sunshine. I have an inner serenity that I have never experienced before.
I never believed in second chances until I received this one. Not everyone will experience a second chance this big. My eyes are washed anew. I am more awake and aware than I was before. I am making an incredible transformation. When a hardship comes to me, it feels like a pebble stuck in my shoe. I take off my shoe, shake out the rock, and keep walking forward without looking back. I feel guarded by an invisible veil of protection.
I am discovering who I am without endometriosis and adenomyosis. After 29 years, I am beginning to feel beautiful, confident, strong, and mysterious from the inside out.
And for this brief moment in time, I can just belong to me.