What is Endometriosis?
By Grace Fox
Endometriosis is not simply a "menstruation disease"; it is a disease that can affect the whole body. Endometriosis is associated with immune and hormonal disruptions. As endometriosis grows, it causes inflammation, which can lead to adhesions, scarring, internal bleeding, bowel or urinary dysfunction, constipation, painful intercourse, or infertility. The physical pain can be severe, which can lead to psychological distress. It’s a combination that, in many ways, can have a debilitating effect on an individual's life.
Endometriosis is a relatively common chronic disease that affects “roughly 10% (190 million) of reproductive age women and girls globally,” according to the World Health Organization (1). Approximately one in 10 women in the U.S. It strikes women* from all racial, ethnic, and socioeconomic backgrounds. There is no known cause of the disease and no cure, though it is treatable (10). About 70% of adolescents with pelvic pain that does not respond to traditional birth control have been found to have endometriosis (9). Despite the prevalence of endometriosis, many women struggle to get a diagnosis or appropriate treatment. Unfortunately, there is currently no cure, and treatment focuses on limiting symptoms, though to varying levels of effectiveness, according to one interview subject diagnosed with the disease, which is detailed in the third graph.
What is Endometriosis?
Endometriosis is “a disease in which tissue similar to the lining of the uterus grows outside the uterus,” which can cause pain, fertility issues, excessive bleeding, bloating, and the formation of scar tissue with further health consequences (1). However, symptoms vary and most commonly present as painful periods (9). The severity of symptoms also does not necessarily correspond to the level of growths; a person could have almost no pain with many growths or severe pain with a small amount of tissue (2). This makes diagnosis even more difficult (9).
Endometriosis is a progressive condition. So even if you don't have symptoms at this moment, you could develop symptoms in the future. 20 to 30% of endometriosis is “silent”, which means patients don’t experience any symptoms. Up to 45% of unexplained fertility can be attributed to “silent endometriosis”. Endometriosis can begin with the first period and symptomatic cases have been reported even before that (9).
Endometriosis is associated with an increased risk of having ovarian cancer, and a slight risk with breast cancer and thyroid cancer. Endometriosis is demonstrated as an oncogenic condition, which means it has cancer-like properties (9).
The Impact of Endometriosis
In order to further explore the impact of the disease on the lives of women, I interviewed Laurel, a 24 year old with endometriosis. She was about 12 years old when she had her first period. Endometriosis can begin with a girl’s first menstrual cycle, though Laurel experienced pain leading up to her first period (1). From the beginning, she “would bleed pretty heavily.”
Laurel has a wide range of symptoms. She realized something was wrong when her symptoms became severe. She describes having “heavy periods, severe pain before my period without even getting my period, excruciating cramps to the point where I would black out or throw up the week before my period, intense bloating to the point where it looked like I was pregnant, heavy diarrhea, and a lot of pain in my pelvic area, especially when I was working out no matter what time in the cycle it was.”
Laurel also had migraines in the lead up to her period, which is one of the issues that doctors latched onto before she eventually got a diagnosis. She describes the time before a diagnosis as frustrating. She got “the run around of a thousand people saying like ‘oh, it’s GI issues, it’s your migraines’ because I get migraines too the week before my period. ‘Oh, well, your hormone levels are fine.’ I think it was just very frustrating and very isolating as well.”
According to the World Health Organization, “endometriosis symptoms are variable and broad, meaning that healthcare workers may not easily diagnose it” (1). Unfortunately, a delay in diagnosis is common, both because of the variable symptoms, but also because these same symptoms may be caused by other diseases (3). The delay between Laurel’s increase in severity of symptoms and diagnosis was about five years, but “on average, there is a four-to-11-year delay between the onset of symptoms and diagnosis (and treatment)” (Yale Medicine, 3).
This delay in diagnosis and treatment can take a significant toll, both in terms of physical health and emotional well being. After Laurel’s surgery, they confirmed her diagnosis of endometriosis, and “it was the first time [she] felt validated after going through three GYN PAs, a gynecologist, and another gynecologist to finally reach a surgeon.” Despite her self advocacy, she “went through five female health providers before finally making it to a surgeon specialist,” who informed her that she “‘would’ve lost [her] ovary if we waited any longer.’”
Treatment of Endometriosis
Although endometriosis is not a curable disease, there are some treatments that focus on decreasing symptoms and slowing the progression of disease. The gold standard way to diagnose endometriosis is through laparoscopic surgery. Some non-invasive ways to diagnose deeply infiltrative endometriosis include highly specialized MRI protocols. In the US, researchers are currently working to see if we can diagnose endometriosis in menstrual blood, which would be revolutionary (9).
The gold standard of treatment for deep endometriosis is minimally invasive laparoscopic excision surgery. A deep endometriosis lesion is like an iceberg. Most of the disease lies implanted underneath the surface tissue. Deep-excision surgery removes these lesions entirely, including the tissue underneath the surface (10).
Pain can be treated with common over the counter medications, including tylenol and aleve, though Laurel noted that even with the use of these medications and devices like a TENS unit and a heating pad “nothing would take the pain away.”
Endometriosis can also be treated with hormonal medicines and a variety of forms of birth control, including “pills, hormonal intrauterine devices (IUDs), vaginal rings, implants, injections, and patches” (1). Although these treatments are valuable, they also have limitations. Birth control is not suitable for women who are trying to get pregnant, and it is not typically prescribed to women with migraines, including Laurel (4). These issues rule out birth control as a method of treatment for many women. Migraines affect “as many as 37% of reproductive-age women in the United States” (4), and in a sample of sexually active women ages 25-45, 14% were trying to get pregnant (5).
Surgery is another option for endometriosis treatment, and it comes in multiple forms. Some surgeons may pursue a hysterectomy, or the removal of the uterus, but many perform either ablation or excision to get rid of the rogue tissue (6). Ablation involves using heat or another energy source to destroy the tissue, but it can’t be effectively used for anything other than superficial lesions (7). Excision is “a technique to dissect underneath the endometriosis lesions all the way down to healthy, non-endometriotic tissue, and then from below, to completely remove the endometriotic tissue” (7).
Laurel had excision surgery. She noted that she was in and out on the same day, and that the recovery “wasn’t that bad,” though she said her abdomen was weak and she had intense pain during her first period after the surgery.
This surgery was only a partial success. “My symptoms I feel are coming back already within a year post excision surgery, but my bloating went down significantly. I was able to exercise for the first time in years without pain. The other thing too, is that I was swollen all the time, like swollen 24/7, my facial swelling has gone down a lot, my bloating- I think my body’s inflammation is just down.”
The surgery also didn’t eliminate the mental toll of the disease. When asked about how endometriosis affects her thinking about the future, she laid out multiple major issues and tough decisions that have to be made for many women with endometriosis. “One, it’s always in the back of your head that you need insurance. Two, you know that it’s growing back and that your quality of life is going to continue to decline as it comes back, and that there’s no solution. It can adhere your organs together and cause organ failure and other issues like that. But also if you don’t have kids by a certain point you're not going to be able to more than likely. So you know that you have potential fertility issues. And just generally speaking, it makes you have to plan ahead, and it makes you almost feel like it’s a never ending doom cycle of knowing that you’re gonna just keep ramping back up again, and the symptoms will start until you get another excision surgery, and another, and another, and it doesn’t solve it. Because the more excision surgeries you get, the more scar tissue, which causes its own set of issues.”
What’s Next?
Endometriosis, like many other health conditions that affect women, is a disease where a lack of knowledge and research hurts patients. The cause of endometriosis is still currently unknown. Surgery remains the only conclusive way to diagnose the disease, and despite the use of biomarkers to diagnose other diseases, that knowledge has not been applied effectively to endometriosis (8). Although there are some treatments, for many patients, they have limited effectiveness and may conflict with other goals, including pregnancy. The patient experience can also be distressing because of the confusion of endometriosis with other conditions, or because of women having their pain and concerns simply ignored.
Patients must trust their own judgment, work with their physician, and find a pain management strategy that works best for them if they explore alternative treatment measures (10).
Laurel concluded with her messages for the general public and medical professionals, both of which highlight the issue of perception when it comes to women’s health.
For the public, she says “that it’s more than just a disease that affects fertility. It affects a lot of other things,” including pain and its impacts on a person’s life. For medical professionals, she says to “educate yourself, because the amount of people that I went through to get some type of answer- my surgeon said ‘you would’ve lost your ovary if we waited any longer.’ So if someone hadn’t believed me, I would’ve lost an organ.”
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