A compassionate guide to understanding endometriosis
Kaileigh Bunting / / Contributor
Karla Monterrosa // Illustrator
Painting the Picture
Imagery can be a powerful tool when describing subjective experiences or intangible ideas. Doctors use specific adjectives frequently in their practice to help assess their patients more accurately, in hopes of settling on a diagnosis and treatment plan. Anything from ‘a stabbing pain’ to a ‘flaming hot fever’ can be helpful in distinguishing ‘normal’ from ‘serious issue’. Despite good intentions, the medical world isn’t perfect and the methods used by medical professionals looking for a diagnosis does not work for every case. For this reason, it is imperative that compassion, humility and front line education penetrate the medical bias in exam rooms.
Endometriosis is a chronic illness affecting 1 in 10 women, in which cells similar to those that populate the inside of the uterus begin to grow on other internal structures. These cells can migrate to different organs in the body (most commonly in the pelvic cavity) and through the production of pro-inflammatory factors, cause scarring of internal tissues, the adhesion of organs and other serious complications. Using imagery again for a moment: it is a disease gluing internal organs together with inflammatory adhesions like concrete wrapped around rebar. The result is a mix of debilitating pain, excruciating menstruation, infertility, and an increased risk of developing other chronic conditions. An entire thesaurus could be filled with words to describe endometriosis, however ‘it’s the fucking worst’ is also quite illustrative.
Despite the obvious gravity of endometriosis, a glaring lack of research on its pathology, diagnosis and treatment are prevalent today and throughout history. “My doctor refused to give me the surgery I needed,” Tabitha Britt, founder and chief editor of DO YOU ENDO magazine said when asked about the barriers women face in receiving a proper diagnosis for endometriosis. Britt has been an advocate for women with endometriosis since spending fourteen years advocating for her own life. “Seven gynecologists in, I started to doubt myself,” Britt wrote in an article for DO YOU ENDO, in which she highlights the importance of patient support. Women are more likely than men to have medical symptoms dismissed by professionals. Instead of listening and offering solutions, one doctor after the next touted: “that’s just normal period pain” as the only conclusion offered to Britt, like thousands of others. Not only is this apathy discouraging and dismissive, but it puts millions at risk for other complications the longer the disease is left untreated.
It takes women anywhere between seven to nine years of consistently reporting their symptoms to medical professionals before getting a diagnosis of endometriosis, according to The Endometriosis Network Canada. Dr. Sue Turgeon, a family physician located in East Vancouver, recognizes the gap in diagnosis for chronic pain. When asked about endometriosis, Dr. Turgeon expressed compassion for those facing the long road to treatment. Despite the surgery used to diagnose endometriosis being a relatively low-risk procedure, Dr. Turgeon stressed that surgery, big or small, should never be taken casually. While it is beneficial to understand that any surgery can leave patients at risk of serious side effects, it should not be an excuse for professional ignorance. Laparoscopic surgery is the only way to confirm a diagnosis, and it’s imperative that the medical bias surrounding a routine procedure not further impair the course of treatment.
Not Just Period Pain
Menstruation, like most issues surrounding female-coded body parts, is fraught with historical taboos. Throw in chronic pain and a glossary of unpleasant symptoms and it becomes less surprising that endometriosis has been confined to the sterile walls of the OBGYN exam room. For an organ that was once the site of the mythical ‘hysteria’, it often feels like we’re still having the same conversation, especially when told the pain is all in our heads. Sarah Rose, the features editor for the Capilano Courier, “only learned about endometriosis after going through what seemed like a never-ending UTI and increasingly painful periods.” It took Rose educating herself about endometriosis on the internet and years of advocating for herself in the exam room to finally reach a medical team that believed in her illness and her pain. Not only does the lack of education on endometriosis increase diagnosis time, but it also blocks compassionate responses from friends, family and partners, leaving the weight of the illness to fall heavily on the shoulders of those it affects. “One of the more frustrating aspects of having chronic pain is feeling the need to justify it constantly,” Rose said. The lack of conversation surrounding endometriosis only further disables support to patients, leaving lots of women feeling isolated, invalidated and ashamed of their condition. “If people want to be compassionate towards those with chronic pain…[they need to] seriously address some internal judgements they have about what chronic pain is supposed to look like…because pain doesn’t look like anything. It can be anyone, of any age, of any visible ability.”
Britt echoes this sentiment. Through advocating for herself, Britt started DO YOU ENDO as a platform for expression, education and de-stigmatization of endometriosis not just for those who suffer but for partners, trans individuals and anyone looking to know what’s going on with their body. DO YOU ENDO magazine hopes to encourage empathy and create a support system for everyone to benefit from; “for individuals with Endometriosis by individuals with Endometriosis”.
Treatment – the good the bad and the ugly
Even after diagnosis, the fight for patients with endometriosis of any stage continues. Lack of research and professional ignorance are major barriers on the road to treatment for women with endometriosis, specifically when reviewing the applications of hormonal therapy for women with pelvic pain. Despite mounting awareness on clinical transparency, many treatment trials are funded by industry backers, leading to unanswered questions surrounding their validity. In a study published by The Obstetrics and Gynecology Journal, “trials sponsored by [the pharmasutical] industry were nearly four times less likely to publish their results than non-industry-sponsored trials, even though these trials typically had larger sample sizes and were completed faster.”
Endometriosis is momentarily in the media spotlight thanks to commercials for the new drug Elagolix. Otherwise known as ‘leuprorelin’, it’s a synthetic gonadotropin-releasing hormone (GnRH) found under brand names such as Lupron, Elagolix and Eligard. In a commercial it sounds fine, but leuprorelin is a type of chemotherapy drug controversially being used for endometriosis related pain. Like all chemotherapy drugs, it attacks both cancerous and non-cancerous cells. Some doctors purport it can diagnose endometriosis simply via pain reduction. This is false. Leuprorelin inhibits the release of naturally occurring estrogen, pushing the body into a state of chemically induced menopause. The Obstetrics and Gynecology Journal reported that patients who had been prescribed leuprorelin had an average decrease in pelvic pain and other endometriosis-related symptoms, but a survey conducted by the Endometriosis Research Center found that almost half of the responding women reported it to be “intolerable” and “not helpful”. The ugly truth is in certain studies on leuprorelin use for endometriosis, the lead investigator perpetrated scientific misconduct and admitted to falsifying or fabricating 80 per cent of the data in two published studies on the drug, according to the Federal Dept. of Health and Human Services Office of Research Integrity. Ultimately, leuprorelin has not been proven to be significantly more effective in treating endometriosis related pain than oral contraceptives, a safer hormonal treatment more widely available and less expensive. Many women have come out since being treated with leuprorelin and stated that even after discontinuation, they suffer permanent side effects or it caused issues greater than the pain it was intended to reduce. The fact of the matter is too many women receiving pills and injections are under-informed on the potential side effects, as well as dismissed when concerns surrounding these side effects are uncovered. It’s one thing if the drug works and does what it’s supposed to do. It’s another dangerous issue altogether if the drug doesn’t work and was approved on faulty data.
Compassion breaks ignorance
Overall, a lack of education infects both the medical community and those faced with endometriosis. From ignorance of the side effects of potential treatments, to not providing the public with factual information on the condition, the entire system is built on a defective frame. Britt recalled reading a blog comment from an eleven-year-old girl who was advised by her doctor to “get a hysterectomy,” a surgery that involves removing the uterus from the body in hopes of stopping the spread of endometriosis. This is the tip of the iceberg when speaking of patient horror stories and is something no patient should have to experience in the first place.
“It’s crucial that not just those with [endometriosis] be part of the conversation,” said Rose. We’ve been talking for a long time; we need others without it to learn too. When more people know [about endometriosis], more people will feel okay speaking up about it.”
During International Women’s History Month, it’s high time women’s health issues like endometriosis are freed from bias, and a better time than ever to practice patience, extend compassion and embrace education instead of ignorance.