Endometriosis pain can be so severe that it impairs a person’s ability to keep up with school, succeed at work, or have a satisfying sex life
Endometriosis causes physical, sexual, and emotional pain. About 190 million people around the globe have endometriosis, but there has historically been a deafening silence about the disease and the pervasive impact it can have on a person’s life. While endometriosis is a chronic gynecological illness that can affect anyone with a uterus – women, transgender men, and nonbinary individuals – it often goes undiagnosed because its symptoms can be attributed to other physical or psychological concerns. Patients presenting with this pain are often told it is
“all in your head.”
However, endometriosis is becoming a more visible illness, thanks in part to celebrities such as Lena Dunham, Chrissy Teigen, Amy Schumer, Whoopi Goldberg, and others who have begun sharing their stories publicly. To better understand the impact of endometriosis on relationships, 10 couples were interviewed about their experiences of diagnosis, treatment, and living with this disease. Through their stories of how endometriosis-related pain can affect every aspect of daily life, including their intimate relationships.
The basics of endometriosis
When a person has endometriosis, the endometrial cells that line their uterus
“implant”
in places outside the uterus, such as the ovaries, fallopian tubes, and the lining of the abdomen — called the peritoneum. At the end of each menstrual cycle, the uterus sheds its lining, which exits the body via the cervix and vagina. The
“misplanted”
endometrial cells also shed, but they have no place to go – resulting in internal bleeding, inflammation, and pain. An endometriosis diagnosis is described in stages related to the visual presence of the disease, from minimal, or Stage 1, to severe, or Stage 4. However, there is no connection between the stage and the experience of pain. One symptom of endometriosis is intense pain during the menstrual cycle. Another is pain with sex. Because pain with menses or sex can be attributed to
“Normal”
pain, a history of sexual abuse, or psychiatric reasons such as a dislike of sex, some people with endometriosis wait an average of seven years for a diagnosis, which can be visually confirmed only through a procedure called laparoscopy. In addition to these and other types of severe pain, endometriosis can also cause infertility, and patients who want to have children must often undergo medical or surgical interventions to conceive.
Impacts on school, work, and sex
Physical pain from endometriosis can be debilitating. Adolescents with endometriosis may struggle to keep up with their classes, friends, homework, or extracurricular activities when the pain becomes too severe. They may shift to home-schooling or virtual learning to complete their studies. The pain can also deeply affect a career trajectory. All of the participants shared experiences where doctors dismissed complaints of sexual pain – called dyspareunia – from endometriosis. This can delay diagnosis and treatment. Sex and intimacy often become nonexistent, while some couples shared that they have come to accept that pain is part of sex.
Partners can also be affected emotionally. These experiences of pain, of not being believed by doctors and professionals, of negative effects on education and career, and of intimacy destroyed create a heavy emotional burden on individuals and relationships.
Breaking the silence around endometriosis
When you are diagnosed with endometriosis, it can change the course of your life. There is the risk of infertility and therefore conversations about having children may have to happen earlier than anticipated.
Based on this experience, here are some ways to break this silence:
Learn about endometriosis. It directly helps when one’s support systems are educated.
Separate the person from the disease. When the pain you are experiencing from endometriosis is debilitating, help those around you who are also affected to understand that it is because of your endometriosis and it is not personal.
Speak from your own experience, saying, “I …” rather than “You …” When we do this, it decreases the other person’s defenses and opens up the communication, making space for connection.
Recommendations from people living it
The research participants shared their own recommendations, especially the importance of believing that their pain is real; accepting that what they are sharing is their very real experience, and letting them know that they are believed.
By practicing these important relationship skills, we can break the silence around endometriosis.
Adapted from: The Conversation
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