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Scheduled Pain: The Hidden Realities of Endometriosis

Authored by Effat Rahman, Human Biology, Health, and Society ‘24

Conversations with Friends, a fiction novel by Irish author Sally Rooney, is a complicated story of love and conflict among its four main characters. Amid the melodrama comes a poignant storyline that is hardly ever represented in pop culture: the main character’s struggle with endometriosis. The protagonist, Frances, experiences nausea, insomnia, and fainting from her severe menstrual cramps. Frances describes one of her experiences: “I lay on the bathroom floor shivering, while the pain moved up my spine like an animal. I thought: maybe I’ll die, who cares? I was conscious that I was bleeding copiously…A terrific pain was beating inside my body [1].”

Endometriosis, as defined by Parasar, is the presence of endometrial tissue outside the uterine cavity, resulting in chronic pelvic pain and infertility [2]. According to Zondervan, endometriosis affects 10% of reproductive-age women [3]. Endometriosis presents as noncancerous peritoneal lesions and ovarian cysts known as endometrioma which can result in scarring and adhesions [3]. How does the endometrial lining end up outside of the uterus? Endometrial tissue can exit the uterus via retrograde menstruation through the fallopian tubes, which are open to the peritoneal and abdominal cavities [2]. However, retrograde menstruation is incredibly common among menstruating women, so additional factors may contribute to the severe nociceptive presentation of endometriosis. When a woman with endometriosis has a period, the same biochemicals that cause the uterus to contract also activate the endometrial tissue in the pelvis, leading to intense pain [4]. Endometriotic lesions require estradiol to proliferate and express estrogen receptor β at a higher prevalence [3]. Lesions also elicit a dysfunctional inflammatory response by producing cytokines, chemokines, and prostaglandins [3]. This complex endocrine and inflammatory environment results in intense pelvic pain.

Recent reviews report a lack of definitive diagnostic biomarkers of endometriosis [2,3]. This leads to the delayed diagnosis and treatment of endometriosis; “Women see, on average, seven physicians before endometriosis is diagnosed [3].” The “gold standard” of endometriosis diagnosis is laparoscopic visualization of endometriotic lesions followed by a biopsy to confirm; however, such an invasive surgical procedure is “not practical as a first line diagnostic tool. [2]” Other diagnostic methods include transvaginal ultrasonography and magnetic resonance imaging. Current research is being done to find reliable, non-invasive biomarkers of endometriosis, such as altered levels of CA-125, cytokines, and angiogenic and growth factors, but none have been found to be definitive [2].

Zondervan delineates five factors contributing to the difficulty of diagnosing endometriosis: nonspecific symptoms, no specific biomarkers, lack of awareness, stigma, and symptom normalization [3]. It took Sarah Digby 15 years to get diagnosed with endometriosis; she opens up about her story in an article published in the New York Times: She woke herself up one night, screaming from the pain. “I thought: It must be my fault — I must not know how to control my period the way everyone else does,” she said. In her early 20s, the pain became so intense that she collapsed on the subway and in the shower. [4]” Dr. Kathy Huang, director of the Endometriosis Center at NYU Langone states: “One of the big barriers to me is that even for me, as a little girl, I was told that painful periods are normal. That’s the first myth we need to dispel, that pain is normal. [4]” Both patients and doctors downplay the pain associated with endometriosis because menstrual cramps are common; however, severe pain to the point of fainting is not normal and requires medical attention. The World Health Organization states that the severe pain caused by endometriosis can lead to fatigue, depression, and anxiety, decreasing the quality of life for those who have it [5]. There is no cure for endometriosis, and the general treatment for endometriosis is oral contraceptive pills [3]. Surgical intervention to remove endometriotic lesions is also done, but pain and infertility can still continue even after the surgery [3,5].

Moving forward, awareness about endometriosis in both the general public and medical communities needs to increase. The World Health Organization states “There is a need for more research and awareness around the world to ensure effective prevention, early diagnosis, and improved management of the disease. [5]” Research to find a noninvasive, diagnostic biomarker would allow for earlier diagnoses of endometriosis so patients can experience quicker treatment for their pain and infertility [2]. In Conversations with Friends, Frances ends up in the hospital from her grueling pains, only for the first doctor to accuse her of getting pregnant, and the next to perform a painful pelvic exam only to tell her nothing was abnormal, and that her period pains are normal. In a later chapter, Frances displays intense anxiety while grappling with her final endometriosis diagnosis, finding it “apocalyptically cruel [1].” Ms. Lindsey Sorensen opened up about her story in the New York Times; “Every OB-GYN until I was 28 said, ‘That’s normal, some women just have difficult periods [4].’” She had experienced excruciating pain during her period for 24 years and later found out that her endometriosis was so severe that the scar tissue had bound her organs together [4]. We need to prioritize earlier diagnoses for people suffering from endometriosis to prevent the condition from reaching such levels of severity. We also need to provide adequate mental health support for people struggling with such pain and emphasize actively listening to their symptoms and concerns.

Works Cited

  1. Rooney, S. (2017). Conversations with friends. Faber & Faber.

  2. Parasar, P., Ozcan, P., & Terry, K. L. (2017). Endometriosis: Epidemiology, Diagnosis and Clinical Management. Current Obstetrics and Gynecology Reports, 6(1), 34–41.

  3. Zondervan, K. T., Becker, C. M., & Missmer, S. A. (2020). Endometriosis. New England Journal of Medicine, 382(13), 1244–1256.

  4. Blum, D. (2022, July 18). A Debilitating Illness, Often Ignored. The New York Times.

  5. World Health Organization. (2021, March 31). Endometriosis.; World Health Organization.

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