Endometriosis is a commonly misunderstood and misdiagnosed condition that has only recently been brought into the public sphere because celebrities like Julianne Hough, Lena Dunham and Padma Lakshmi have opened up publicly about their personal suffering with the condition. But in reality, it’s quite common, affecting one in 10 women of reproductive age in the United States. Some studies reveal it may be even more common because of the prevalence of patients who have the condition but are asymptomatic, as well as transgender and nonbinary individuals who may have a more difficult time finding appropriate health care to be properly diagnosed.
Endometriosis is a condition that causes the tissue that normally lines the inside of the uterus to grow outside the uterus. The displaced uterine tissue, as a result, has no place to go, so it adheres to the walls of the surrounding organs, such as the bladder, intestines and rectum, which can cause pelvic pain before, during or after menstruation, during sexual intercourse or during urination and defecation. Statistics show those suffering from the condition often receive a delayed diagnosis six to 10 years after they first begin experiencing symptoms. Endometriosis pain can be debilitating for many women and can cause long-term issues that can affect both the physical and mental components of quality of life.
So, why are women suffering undiagnosed? The American College of Gynecology refers to endometriosis as an “invisible illness,” meaning undiagnosed women experiencing endometriosis are trying to manage their pain and other internal symptoms on their own without proper treatment or support. This may be because endometriosis can be difficult to diagnose. It may also be because there’s a lack of awareness, resources and knowledge about this condition. This has to change!
Like the celebrities we idolize who are stepping out to share their stories, other women are banding together to fight back against endometriosis pain, doubt and dismissal. It’s our job to work together to empower those who may be suffering from this condition to share their experiences, to build an arsenal of resources and to give guidance to those who may be diagnosed or need help in the future. The world needs to know what living with endometriosis is really like.
While there may not be a cure for endometriosis right now, there are treatment options. If you are concerned you may be suffering from endometriosis and experiencing any of the symptoms below, consult your doctor. Some of the most common symptoms of endometriosis include:
- chronic, long-term pelvic pain
- painful bowel or bladder symptoms
- pain with sex
- family history of endometriosis
- starting menstruation at a very young age
- long, heavy periods
Many of these symptoms are also present with pelvic-floor disorders, so consult with your doctor about your concerns and to get a proper evaluation and diagnosis. For more information about the Women’s Health Institute at UT Health Austin, visit uthealthaustin.org or call 1.833.UT.CARES.