Misdiagnosis of Endometriosis and its Lasting Impact on Women

Endometriosis is a condition where the tissue normally found in the womb grows elsewhere inside the body. Women may experience tissue growth on their pelvis, their bladder, and even their lungs, all which cause an array of uncomfortable and debilitating pain. The health condition takes place in one in ten women, and a staggering 2 million women in the UK alone. But despite how prevalent the disease is, it is still one of the most commonly misdiagnosed among women who are of reproductive age. Endometriosis Awareness Month is meant to reduce this unfortunate reality for all women.

During the month of March, endometriosis organisations, women of all ages, and medical communities band together to bring about a greater understanding of the disease. Such a large undertaking from many varied groups is necessary in an effort to educate individuals about the growing concerns over endometriosis stigma and the misdiagnosis that goes hand in hand. Without a proper course of treatment on the back of an accurate diagnosis, women living with endometriosis feel helpless and unheard which can, ultimately, worsen their condition. To help alleviate the stress surrounding endometriosis, it is necessary to understand why it is so often misdiagnosed and what can be done to correct the issue.

Why the Misdiagnosis?

The tissue growth found in women living with endometriosis can have a lasting impact on health and well-being, most often presenting as severe pain during sex, menstruation, or persistently throughout the day. Many women with endometriosis also experience fatigue and exhaustion that cannot otherwise be explained, which can by itself be debilitating. It is common for women with endometriosis to make gradual lifestyle changes due to their condition, including minimising time outside the home, avoiding social activities, and drastically reducing their physical activity. Some may also be forced to leave the workforce because of the unpredictability of their symptoms.

In the worst cases of endometriosis, women experience ongoing depression and anxiety. Part of this is due to the common plight of receiving an incorrect diagnosis from the start. For years, endometriosis was ignored as a real health condition and instead viewed as a mental health issue among women. The severity of their pain and the fatigue and depression that came along with it were said to be in their heads, and therefore, no course of treatment was recommended.

For other women, endometriosis symptoms were pegged as another health condition altogether. The pain they felt during sex was linked to sexually transmitted infections, or the food sensitivity they experienced was irritable bowel syndrome. On average, receiving a correct diagnosis of endometriosis takes more than eight years, allowing the disease to worsen and women suffering from it feeling less than hopeful about their future.

The reason misdiagnosis is so common can be connected to the lack of training needed by medical professionals to properly identify and diagnose the disease. While routine pelvic exams and ultrasounds are often part of a well woman’s visit, they are not enough to clearly view tissue growth of endometriosis. It is only through laparoscopy that the disease can be identified.

Unfortunately, many GPs are not experienced in performing the procedure, nor are they comfortable with removing the tissue growth when it is discovered. Endometriosis specialists exist in the healthcare world, but to get to them, women must receive a referral from their primary care provider. When there is an overwhelming school of thought that endometriosis is not the culprit, that referral may never come. This leaves women without a course of treatment that is beneficial in reducing symptoms and keeping further tissue growth at bay.

Support Efforts for Women with Endometriosis

There have been several improvements in the medical arena surrounding endometriosis diagnosis and treatment, including a ramp-up in the number of doctors trained to perform the specialised procedure to discover tissue growth. However, more research is necessary to help uncover a cure and more impactful treatment for endometriosis. Unfortunately, the prevalence of the disease has not yet warranted an increase in research funding, unlike other common health conditions like diabetes and heart disease. Endometriosis Awareness Month is meant to increase knowledge of the disease and in-turn, increase fundraising for much-needed research efforts.

For those who want to get involved in Endometriosis Awareness Month, the task is simple. Visiting a charitable organisation like Endometriosis UK offers invaluable tools for women living with endometriosis and those who want to support them. Local community events focused on education and fundraising, support groups, and current research efforts may all be found on the site, along with easy ways to contribute to the cause.