Hypothesis / aims of study
Endometriosis is a chronic inflammatory condition affecting 5-10% of biologically female individuals worldwide, often causing pelvic pain, dysmenorrhea, dyspareunia, and bowel or bladder issues [1]. It significantly affects mental health, leading to depression, anxiety, and reduced quality of life. Symptoms, along with changes like bloating and scars, can negatively impact body image, which encompasses both negative and positive perceptions [2].
Medical trauma results from distressing healthcare experiences, such as invasive procedures or severe treatment reactions. Responses vary; some patients manage interventions, while others develop trauma symptoms. Individuals with endometriosis undergo more frequent physical exams and touch than healthy individuals, which may have both physical and psychological effects, potentially harming body image [3].
This study aimed to explore the perspectives of individuals with endometriosis on their body image concerning treatment. Understanding these perceptions could help refine therapeutic approaches, reduce treatment-related psychological distress, and improve patient-centered care.
Study design, materials and methods
An anonymous survey on body image perceptions related to endometriosis treatment was shared via the Endopolki Foundation’s social media, targeting individuals with a confirmed diagnosis. Informed consent was obtained from all participants. The survey collected demographic data and explored changes in body image, including body ownership, touch aversion, and the impact of physical contact on experiences and relationships. Participants could also share insights through the prompt "My body is not mine." Data were analyzed using basic statistics and narrative analysis for qualitative responses.
Results
The study involved 108 women, with a mean age 31.65±6.9 years, mean BMI 22.6±4.5, and an average 4.33±6.02 years since diagnosis of endometriosis. Most participants (75.9%) had a university degree. Around 87% reported changes in body image since treatment, with 58.3% viewing it negatively. The majority (89.8%) said body perceptions impact self-worth. Sixty-two percent felt their body was less their own, and 78.7% were frustrated by frequent specialist visits and physical contact. Half disagreed with disliking or finding contact more irritating. A minority (31.5%) took breaks from therapy, and 25.9% said physical contact affected partner relationships. Thirty-seven women responded to the open-ended question "My body is not mine," with some agreeing that treatment and the disease impacted their body management. Examples of expressions include: "My body feels mainly controlled by the disease. All tests and doctor visits seem focused on it, not me. Before the diagnosis, I felt separate from the disease, but over time, that divide has grown. Only pain unites everything in my mind, but once it passes, I return to a state of isolation”, or "Paradoxically, since the diagnosis, I feel more connected to my body, listening to and caring for it. I was once disconnected, seeing it only as a function, but when it 'rebelled,' I had no choice but to pay attention to it, not just focus on my thoughts and tasks."
Interpretation of results
The diagnosis, disease symptoms, and ongoing treatment, involving frequent physical contact, significantly impact individuals with endometriosis. While the negative effects of treatment are apparent for some, the psychological burden of medical trauma and the constant medicalization of the body are often overlooked. Many women may experience significant changes in body perception, which should be addressed through appropriate forms of therapy. Additionally, raising awareness among women about the impact of treatment on self-perception is essential to help them prepare for these changes.