March is Endometriosis Awareness Month. If you haven’t heard of endometriosis, you are not alone. While it’s estimated that around 10% of the world’s population has been diagnosed with endometriosis, it’s a disease that receives little attention. Endometriosis is a condition where tissue similar to the lining of the uterus is found on other parts of the body. The vast majority of endometriosis is found within the pelvic area but, in rare cases, it has been found on or above the diaphragm, including on the eye, lungs, and brain. A study was done in 2012 to estimate the annual cost of endometriosis in 10 different countries. Pain was identified as the driving factor for these expenses and included health care costs and costs related to loss of productivity. In the United States, it was estimated that the annual cost of endometriosis was around 70 billion dollars. Two-thirds of that estimate was attributed to loss of productivity and the remaining third attributed to health care costs. For a disease with such a financial impact, little is known about endometriosis and its research is grossly underfunded. The two biggest costs for those who suffer from endometriosis are quality of life and the possibility of infertility. Ask anyone diagnosed with endometriosis, and they will tell you that the physical and emotional toll it takes is far too great for the disease to remain such a mystery.
I was diagnosed with endometriosis in the early 2000s after I started having chronic pelvic pain. Because I had access to quality health care and was covered by health insurance, I was diagnosed rather quickly. For several reasons, the average time it takes for an individual to be diagnosed and treated for endometriosis is 6 to 10 years. These reasons include a lack of access to health care and medical insurance, lack of awareness in the medical community, diagnostic challenges, and stigma. The only way to diagnose endometriosis is through surgery. Endometriosis cannot be seen on diagnostic images. The cause of endometriosis is unknown. Since being identified in the 1920s, doctors and scientists have only come up with possible explanations. Endometriosis is thought to have a genetic component, with possible links to inflammation and autoimmune disorders. Other possible explanations include retro-grade menstruation, transformation of certain cells related to hormone and immune responses, or as the result of implantation caused by surgical procedures like a C-section or hysterectomy.
There is no cure for endometriosis; it can only be managed through surgical intervention, hormone therapies, and pain medication. Seeking treatment for endometriosis can be stigmatizing. More times than should ever happen, those who seek treatment for endometriosis are dismissed due to the myth that periods are supposed to be painful. While there is some pain that can occur with menstruation, it is not normal for it to be debilitating. After several times of their pain being categorized as “normal” or being told the pain was related to psychological issues and to seek mental health treatment or being accused of drug seeking, many with undiagnosed endometriosis go on suffering in silence for years. I am very sad to say that these dismissive responses come from male and female medical professionals alike.
In 2020 I started experiencing severe pelvic pain again. Stress can cause a flare-up of the disease. After a while, the pain started to spread to my leg and other areas in my pelvis. I dismissed it as part of my endometriosis pain thinking that it had probably started growing on my nerves, bowels, and whatever was close to my hips. I didn’t seek treatment because I too had been dismissed in the past. I have been told to go see a therapist. I was even accused of drug seeking until I showed my doctor my completely full bottles of prescription pain killers that I didn’t take because they didn’t help. I finally went to see a chiropractor when I was barely able to walk across the room and felt excruciating pain when standing still. I thought maybe the chiropractor could do an adjustment and take some pressure off the nerves in my pelvis. It didn’t make much sense but, I was desperate for relief and seeing a chiropractor was the fastest way I could get an appointment to see someone. At that point, I didn’t care if the practitioner had nothing to do with treating endometriosis. I just wanted relief from the pain. I am so glad I made that appointment. It turns out that what I thought was pain related to my endometriosis, was actually two herniated discs in my lower back that required spinal surgery to repair. Mine is one of far too many examples of unnecessary suffering because of the stigma and lack of awareness that can surround some health conditions.
The diagnosis and treatment of endometriosis is complicated by so many factors, including that there is no predictability to how the severity of an individual’s endometriosis will affect their fertility or the severity of their pain. The pain and infertility caused by endometriosis is the result of lesions and scar tissue, also known as adhesions, that build up throughout the abdominal and/or pelvic area. This scar tissue can cause internal organs to be fused together and pulled out of their normal position which can cause severe pain. However, some with mild cases of endometriosis can experience tremendous pain while others with severe cases feel no pain at all. The same goes for fertility outcomes. Some can become pregnant easily while others are never able to have a biological child. Regardless of how symptoms present, if left untreated, the lesions and adhesions caused by endometriosis can lead to having to remove the uterus, ovaries, or parts of other organs like the bowels and bladder. If even one microscopic cell of endometriosis is left behind, it will continue to grow and spread. Spreading awareness about endometriosis is crucial to early diagnosis and treatment and will help increase funding for research. Hopefully, one day no one with endometriosis will have to continue suffering in silence.
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