Realizing their Period Pain Isn’t Normal: Women’s Experiences with Endometriosis
by Alexandra Fuhs
Endometriosis is a disorder in which tissue similar to the lining of the uterus (called the endometrium) grows outside of the uterine cavity. The tissue grows around the pelvic regions, mostly on the ovaries, bowel, and tissues lining the pelvis. The growth is often very painful and can result in scar formations, fertility problems, and adhesions (where the tissue binds organs together). The causes of endometriosis are still unknown. In order to get a definitive diagnosis, a physician uses a laparoscope (a camera inserted through an abdomen incision) to examine the tissue and organs of the abdomen and pelvic region. If suspicious lesions or tissues are found, a biopsy is performed to confirm that it is endometriosis.
Endometriosis affects roughly 10% (or 190 million) of reproductive-age women and girls around the world. However, because of the difficulty in diagnosing it and the fact that it is an “invisible disease,” someone who saw a woman with endometriosis wouldn’t know that she had it just from looking at her. There have been efforts made to address this. The Endometriosis Foundation of America (EndoFound) is one group striving to “increase disease recognition, provide advocacy, facilitate expert surgical training, and fund landmark endometriosis research.” In hopes of raising awareness, they feature many women’s stories about their experience with the disease and how they manage it.
Many of the women who shared information about their experiences agreed that they had had unusually painful and often debilitating periods — a common symptom of the disease. Amrita Rajagopal, who is currently 40 years old and has had symptoms since she was 18, described it as having a knife twisting around inside you. She said, "Too many times, I’ve crumbled onto the floor in random public places (subways, train stations, parks) when things become unbearable to the point of fainting.” Doctors dismissed her pain as “just cysts,” and after changing doctors multiple times she was finally able to find a surgeon who would perform excision surgery. Amrita’s is one of many stories where women are unable to be taken seriously. In fact, the average time it takes to be diagnosed with endometriosis is 7 years!
Even when patients are able to find doctors willing to acknowledge their pain, they are often misdiagnosed, sometimes multiple times, before finally being diagnosed with endometriosis. Being officially diagnosed comes as a relief to many as it allows them to begin a path of treatment. Morganne Skinner, another woman whose story is featured on EndoFound’s website, had her painful periods dismissed by doctors for years until her symptoms worsened and she was diagnosed with a GI infection. As time went on, her diagnosis changed: “Overtime they thought I had numerous different conditions: celiac disease, a food intolerance, cancer, Addison’s disease, a worm infection, a hidden parasite infection, SIBO. And on and on.” When she asked whether she might possibly have endometriosis, she was told that endometriosis doesn’t cause bloating so that could not be the case. It took Morganne 15 years to be officially diagnosed, and this was only after referring herself to an endometriosis excision specialist. She considers having the surgery a life-changing experience as it improved her quality of life greatly, and she uses her personal experience to advocate for women’s health and spread awareness.
Currently, there is no cure for endometriosis despite it affecting a significant part of the population. Hormonal medications are often used to reduce tissue growth and prevent the formation of tissue adhesions. Laparoscopic surgery is used for both diagnoses and to remove excess growths. In severe cases, a hysterectomy may be recommended, where the uterus and cervix are removed. This is not foolproof either, though, because the growths can spread outside of that area. However, many researchers are working to discover he root cause of endometriosis in order to begin developing more effective treatments. Advocacy groups like EndoFound are partnering with patients like Amrita and Morganne to spread awareness through their stories about endometriosis and women’s health — which is a key step in speeding up the path to a cure and receiving funding for research.
Thank you for reading, and I hope you enjoyed our second installation of Women's Health week! If you liked this article, be sure to read the first article of our Women's Health Week, which was about Myths in Women's Health (linked here).
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Alexandra and the Writing Committee :)
Mayo Clinic. “Endometriosis”. Diseases & Conditions, 24 July 2018.
WebMD. “What is Laparoscopic Surgery for Endometriosis?”. Women’s Health, 17 June 2020.
World Health Organization. “Endometriosis”. 31 March 2021.
Medical News Today. “The latest in endometriosis research: Ways forward”. 17 March 2021.