'Why Am I Not Fixed'
My partner, Emma, was told she had endometriosis in February 2020. Endometriosis is a disease in which tissue similar to that inside the uterus grows outside of it. It can be incredibly painful, with large cysts growing on the ovaries, cause chronic fatigue and can lead to infertility and, in some cases, increased risk of cancer. It is an illness steeped in medical misogyny, and the normalization of painful symptoms as an unavoidable part of womanhood often leads to a delay between when symptoms appear and when treatment begins.
Emma's treatment began on July 28, 2020, when her surgeon removed three large cysts from her ovaries, burnt off a number of smaller lesions from her uterus and unfused her left ovary from her fallopian tube. Theoretically, she wouldn't need another surgery for five years.
As Emma put it, "We were all very optimistic." Too optimistic.
From August 2020 to March 2021, Emma underwent 10 ultrasounds and I took her to the emergency room three times. All were due to immense pain on her left side coupled with the fear of a medical emergency called ovarian torsion.
"Things got extremely dark," Emma said regarding that period. "I thought, 'I was supposed to be fixed. Why am I not fixed?'"
After months of increased pain, the growth of a new cyst and an appointment with a doctor who specialized in endometriosis, Emma's second surgery was on April 7, 2021. This surgery removed her left ovary and Fallopian tube, which the specialist said had been practically destroyed by endometriosis.
As the second surgery approached, Emma and I agreed to stop photographing her endometriosis.
Emma, wearing her surgical gown, hair net and COVID-19 mask, prior to her first surgery on July 28, 2020 in St. Louis. Emma was first told she might have endometriosis in February 2020, but the disease requires surgery to officially diagnose.
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Emma tries to get comfortable in her bed two days post-op on July 30, 2020 in St. Louis. For the first week after her first surgery, Emma was practically bedridden, consumed by frequent bouts of post-surgery pain and inflammation, taking pain medication that made her drowsy without letting her actually sleep.
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One of Emma’s friends gave her a stuffed utuerus prior to surgery. She named it Ursa, after Zuko’s mom from Avatar: The Last Airbender. Here, Emma holds Ursa after arriving home from the hospital, on July 28, 2020 in St. Louis.
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Emma gazes out her bedroom window on Aug. 2, 2020 in St. Louis. She said that when she looks at this photo, she is reminded both of how exhausted she was and hard how she tried to hide that exhaustion from me.
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Emma examines the scars left from the first surgery on Aug. 8, 2020 in St. Louis. The first surgery left three small scars, one on each side and one inside her belly button. The second surgery added two scars to her left side, another on her right side, another inside her belly button and a scar a few inches below her belly button.
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Emma stands outside her parents’ home, where we stayed while she recovered, on Aug. 7, 2020 in St. Louis. By this time, more than a week after her first surgery, Emma was still sore but felt well enough to leave the house. The day before, we had braved a trip to an aquarium and to Art Hill in St. Louis — two of Emma’s favorite places in the city. However, soon after her designated two-week recovery ended, Emma’s endometriosis symptoms grew worse than ever.
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Emma clutches an electronic heating pad to her abdomen on Oct. 30, 2020 in her home in Columbia. Applying heat is one of the few ways Emma can alleviate endometriosis pain. There have been some days when she cannot get out of bed, and clutches this pad to her abdomen for hours at a time.
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Emma cries after hanging up from a phone call with a nurse on Aug. 28, 2020 in Columbia. The call brought bad news — another large cyst had been found on her left ovary — during a time when Emma’s pain had resurged and hospital visits were frequent.
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Emma rubs her eyes during a late night trip to the emergency room on Aug. 28, 2020 in Columbia. Between Auguest 2020 and March 2021, Emma underwent 10 ultrasounds and went to the emergency room three times. She often feared a medical emergency called ovarian torsion, in which the ovary twists over on itself, cuts off blood flow and begins to die.
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Emma rests after a shower on Nov. 8, 2020 in Columbia. After this picture was made, I told Emma I wanted to stop making pictures of her endometriosis. As her symptoms worsened, photographing her suffering became too much. She agreed. “I think there had just come a point where we needed to put down the camera,” Emma said. “I felt we had reached a natural conclusion.”
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