March is Endometriosis Awareness Month, and there’s no better time to talk about this invisible but terrible disease. Endometriosis and all of its related chronic conditions like polycystic ovary syndrome, adenomyosis, small intestinal bacterial overgrowth, interstitial cystitis and pelvic floor dysfunction are no joke. Although it was estimated that one in every 10 women around the globe have endometriosis, the vast majority of those 178 million people have either never heard of endometriosis, have been misdiagnosed or don’t have the opportunity to find a specialist in the field. 

Endometriosis is an invisible but incredibly debilitating disease. It has been referred to as the ‘missed disease’ due to its unclear presentation and inconsistencies in its diagnosis and management. Cases have skyrocketed in recent years, and almost everyone with a uterus experiences endometriosis-related symptoms to some extent. During this modern epidemic, it is essential that those who are at risk of being affected are educated regarding symptoms to watch for and are familiar with lifestyle changes that can alleviate symptoms and slow the growth of diseased tissue. It is also important that people feel validated in their quest for medical attention. Advocacy among both women and men is critical in order to gain recognition by insurance companies and government funding for scientific research. 

The World Health Organization characterizes endometriosis as an incurable disease in which tissue similar to the uterine lining grows outside the uterus. Similar to healthy uterine lining, this abnormal tissue builds up, sheds, and bleeds with each period. However, since endometrial tissue is trapped outside the uterus, the blood and shed tissue can’t leave the body through the vagina. Instead, it causes extremely painful internal scarring, adhesions (when tissue sticks together) and lots of inflammation in the pelvic region and sometimes higher. Many patients experience debilitating pelvic pain, heavy bleeding, fatigue, gastrointestinal symptoms, bladder pain, hormonal imbalances that increase the risk for acne, vaginal infections, anxiety and depression. Due to this broad range of symptoms, patients often go undiagnosed for years until the severity of their discomfort impedes on daily tasks and prompts them to seek urgent help. 

Endometriosis can only be diagnosed via post-surgery pathology analysis. However, gynecologists can offer symptom-management treatment options if it is suspected that a patient might have endometriosis. Birth control pills, IUDs and similar solutions can influence hormone levels to lessen the frequency and severity of menstrual cycles and slow down the growth of suspected endometriosis tissue. Non-steroidal anti-inflammatory drugs (NSAIDs) are also commonly prescribed for pain. However, for many endometriosis patients, symptom management does not provide enough relief. After what is often seven or more years of extreme pain, the central nervous system of endometriosis patients is extremely overwhelmed with pain signals, leading to tense pelvic floor muscles. These muscles must be able to relax in order to start releasing built up tension within the pelvis. A referral to pelvic floor physical therapy is an incredibly powerful tool for releasing this tension. 

Since most individuals with endometriosis go misdiagnosed for years before realizing they might have the disease, the large amount of NSAID usage from constantly taking painkillers often lead to a gut condition called small intestinal bacterial overgrowth, more commonly known as leaky gut syndrome. Essentially, the mucus lining the gut weakens so much that harmful bacteria escapes the gut, causing bloating, acne and other symptoms of poor digestion due to inability to digest high fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAP) foods. FODMAP is an umbrella term used to categorize foods that have a complex carbohydrate structure that is difficult to break down for people with specific gut conditions. 

The food we eat has a huge effect on how we feel, so it is important to fuel the body with foods that won’t trigger pain or discomfort. For SIBO management, it is recommended to also avoid large amounts of high FODMAP foods. There are a broad range of foods that fall into this category, from lactose and gluten to beans and certain fruits or vegetables. For endometriosis management overall, it is recommended to avoid highly inflammatory foods that induce cramping, which can be achieved by limiting the consumption of dairy, gluten, soy, caffeine, alcohol and processed foods or oils. Acidic foods such as coffee and tomatoes may also need to be reduced or eliminated from the diet to address interstitial cystitis (IC). These diets may also help with the management of hormonal imbalances and other related conditions such as polycystic ovarian syndrome (PCOS) and irritable bowel syndrome (IBS). 

Finally, it is time to address the elephant in the room: surgery. If it is strongly suspected that a patient has endometriosis, a specialist will plan an outpatient robotic laparoscopic surgery date. A post-op pathology report is needed to officially diagnose endometriosis tissue and is usually needed for the insurance coverage of the operation. These surgeries can cost hundreds of thousands of dollars, but are absolutely necessary when your life is being halted by endometriosis pain. In some cases, procedures will need to be repeated multiple times throughout a patient’s life, with many added expenses to protect fertility. Adenomyosis, which is a very painful condition in which diseased endometrial tissue is in the muscles of the uterus, can only be removed via a hysterectomy. 

Endometriosis is a complex and relatively poorly understood disease that can affect anyone with a uterus. While it is a disease with an enormous health care burden, there is no cure due to lack of research funding. After reading this article, if you’re thinking “this sounds like me,” you’re not alone. So many people are silently suffering from endometriosis and have no idea that their symptoms fall under a very real condition. Self-advocacy for medical attention is essential, and holistic aspects of general self-care can be reinforced at any time. Maintaining a gut-friendly diet, limiting exposure to toxins like bisphenol A (BPA) and harsh chemicals, exercising, drinking enough water, practicing meditation and recording when and in what way your body feels off are all great ways to stay in touch with your health and live a pain-free life.