The "Invisible Disease" of Endometriosis

Endometriosis – A lesson in listening to patients and the need for clinical diagnosis

OpEd Written by: Dr. Yolanda Kirkham, Assistant Professor, Department of Obstetrics and Gynaecology

It's not okay for young girls to have to miss a couple of days of school every month, so much so that they have to repeat a grade. It's not okay for women to be curled up under their desk at work, vomiting in the fetal position due to monthly menstrual pain. It's not okay for daily chronic pelvic pain to disable anyone to the point they would exchange fertility desires for a pain-free life, desperate for a hysterectomy. But this is endometriosis. And it is time to do better in diagnosing, treating, managing, and supporting the 176 million people who live with this insidious, chronic, inflammatory, pain condition. 

One of the problems with endometriosis is that we are not quite there in understanding how and why it affects about one in 10 women. Multiple theories exist about the pathophysiology of endometriosis, including retrograde menstruation/implantation of ectopic endometrium, metaplasia, immune factors, and epigenetics. The disease is complicated by three different forms of endometriosis (peritoneal, ovarian and deep infiltrating). They manifest as various colours of endometriosis (clear, white, red, brown, black), some of which can be missed in laparoscopy. These abdomino-pelvic lesions later cause distorted pelvic anatomy and cobweb-like adhesions that can lead to increasing painful pelvic, bowel, bladder, sex symptoms, disability, and/or subfertility. 

Endometriosis boasts a loathsome statistic of eight years or eight physicians before a diagnosis is made. How has this diagnostic delay been acceptable? How can we continue to let women and transmen suffer for this long? Those who suffer from painful periods, and their family, friends, teachers, and care providers need to acknowledge and treat abnormally painful and often heavy bleeding. We need to hear the family history of multiple female relatives with dysmenorrhea and the impact of their pain on quality of life. Symptoms that cause people to miss school, work, and social events need to be diagnosed and treated, even if ultrasound techniques are not yet adopted or sensitive enough to pick up the "paint splatter" lesions of endometriosis. Because first-line anti-inflammatory medications and combined hormonal contraception decrease painful periods, many people with endometriosis unwittingly start to treat their disease without knowing they have it. This is not a bad thing; however, the disease and symptoms may continue and progress when the medication is stopped. And the lack of a named cause for the pain is distressing and creates self-doubt. We have probably done a disservice to claim that the gold standard for diagnosis is surgery. Surgical access may seem less a problem in Canada (although there are surgical wait times and delays to consultation), but in many countries without universal healthcare, financial and personal costs of surgery for diagnosis and treatment are prohibitive.

So isn’t it time that we move toward a clinical diagnosis for endometriosis? I have found that asking for and listening to symptom descriptions, then asking the patient what they are expecting from the visit, to be very helpful in diagnosis and moving toward effective treatment for any individual. By giving a name to the progressive menstrual pain and ensuing chronic daily pelvic pain, bowel, bladder, sex, mood, and fertility difficulties, we validate endometriosis sufferers’ symptoms. Early diagnosis and advocacy encourage people to attain support through support groups. The feeling that they are not alone is tremendous. People can start to seek help and understanding of the disease. While some frustrated patients want a surgical diagnosis for validation, many patients voice a desire for medical treatment over surgical. Fortunately, we have options with different routes of administration (oral, intrauterine, transdermal, intravaginal, injection) and modes of suppressing menstruation/endometriosis to suit patient needs. Medications work very well to diminish or eliminate pain in many patients, while others struggle with possible side effects; some want surgery and others want to avoid it at all costs. Adjunct treatment such as pelvic floor physiotherapy, counselling, mindfulness, acupuncture, yoga, nutritional and lifestyle changes, and pain clinic recommendations remain essential. These approaches are in line with the shift toward medical treatment and minimizing multiple surgeries for endometriosis, as excision may not completely eliminate progression of the disease and is not curative. The diagnosis followed by medical treatment also allows pre-operative planning – incorporating new sonographic clues for identifying endometriosis and assembling a surgical team. Endometriosis deserves clinical diagnosis the way we diagnose ovarian torsion. 

Counselling about endometriosis is paramount. The key concept is that continued menstruation aggravates the hormonally-driven abdomino-pelvic lesions and leads to inflammation and pain. Endometriosis is complicated. The extent of pelvic disease does not correlate with the extent of pain. Not everyone has all of the associated symptoms of endometriosis. Nor do they have to, if early treatment is started. Not everyone has infertility, which we should probably term subfertility. Most women with endometriosis continue on to have babies, if that is their desire. Treatment can protect fertility by halting disease progression that leads to anatomic distortion or scarring. Treatment can make pain-free quality of life a reality. 

It is common for someone with endometriosis to be disenchanted with medical care. And who can blame them after the notorious decades of suffering, lack of diagnosis, “normal” pelvic ultrasounds, or multiple care provider and ER visits. We need to listen and hear the ways in which patients describe their pain – debilitating, twisting pulling pains, down their legs and backs with the inability to function - or the progressive menstrual then daily disabling pain that, in worst-case scenarios, can leave them socially isolated, depressed, and distressed. We can change life trajectories, quality of life, work and social productivity. March is Endometriosis Awareness Month, but for people living with endometriosis, the debilitating symptoms are a daily reality. Ask yourselves, could this be endometriosis?  We need to start seeing and treating this “invisible” disease.

See below for the "6Ds of Endometriosis", a guide to help clinicians in diagnosing this condition.

For those interested in reading more, I invite you to read:   

Clinical diagnosis of endometriosis: a call to action. Agarwal SK, Chapron C, Giudice LC, Laufer MR, Leyland N, Missmer SA, Singh SS, Taylor HS. Am J Obstet Gynecol. 2019 Apr;220(4):354.e1-354.e12. doi: 10.1016/j.ajog.2018.12.039. Epub 2019 Jan 6. https://www.ajog.org/article/S0002-9378(19)30002-X/pdf

Dr. Yolanda Kirkham is an obstetrician and pediatric, adolescent, and adult gynaecologist. She is an assistant professor at the University of Toronto and advocates for early diagnosis of endometriosis.

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