The Lives of Women with Endometriosis

Endometriosis can continue to negatively impact quality of life even after treatment

/ Author:  / Reviewed by: Robert Carlson, M.D Beth Bolt, RPh

(RxWiki News) Endometriosis is a common health problem for women. This condition can be very painful, and researchers are learning more about how that pain and other symptoms can affect patients' quality of life.
Researchers recently set out to see how living with endometriosis affected patients' overall quality of life. Endometriosis is a condition in which tissue, that normally lines the inside of the uterus, grows outside of the uterus instead.

The researchers found that, even after these women were treated, the symptoms of endometriosis negatively affected both their mental and physical health. It was also found that women with endometriosis were likely to experience problems at work and in their relationships because of their symptoms.

According to the study's authors, these findings suggest that medical care for endometriosis should focus on each patient's individual needs in order to address the emotional, sexual and social problems that may come with endometriosis.

"Talk to your healthcare provider about a multi-discipline approach to treatment."

This study was conducted by the WERF EndoCost Consortium — a research network of 12 tertiary care centers from 10 countries that specializes in endometriosis symptoms. The lead author of this study was Aisha De Graaff, MD, of the Department of Obstetrics and Gynecology within the GROW Research Institute at Maastricht University Medical Centre in The Netherlands.

The fact that the women in this study were enrolled in tertiary care centers could lead to a possible over-representation of women with moderate-to-severe endometriosis, because the participating centers typically treat more complex and referred cases of endometriosis.

The findings from this study suggest that endometriosis affects women on both the physical and mental level. The authors believe that a comprehensive care plan tailored specifically to the patient's needs, involving collaboration between multiple types of doctors such as pain specialists, psychologists, sexologists, and social workers is the best way to adequately manage long-term care and improve the overall quality of the patient's life.

Previous studies suggested that women with endometriosis have a lower quality of life, but this study is the first to look at a large population of women and to focus on women who had already gone through treatment.

"Endometriosis is a disease of the pelvis in which endometrium (tissue from within the uterus) gets outside in the pelvis and implants on the external uterus, ovaries, bowel, or pelvic wall. This can lead to a host of symptoms including pelvic pain, pain with intercourse, and infertility," Andre F. Hall, MD, physician and owner of Birth and Women's Care, P.A., told dailyRx News.

"Unfortunately, there is no real correlation between the amount of endometriosis in the pelvis and the degree of symptoms. Treatments must be individualized to the given patient and must be specific for the various physical as well psychological manifestations of the disease," said Dr. Hall.

The authors of this study stated that between 2 percent and 10 percent of women of reproductive age within the general population are affected by endometriosis. Therefore, this study examined the effect of endometriosis on women's work, education, and general social well-being.

This study included 931 women who had already been diagnosed with endometriosis and had had at least one contact with any care center within the WERF EndoCost Consortium for endometriosis-specific symptoms during 2008.

Each of these women answered a questionnaire that asked about their education, work situation, marital status and medical history including any surgery, fertility treatments or other illnesses that occurred at the same time at any point in the woman's life.

The researchers then used a second questionnaire that asked the women to discuss how endometriosis had impacted their lives starting from the moment when they were first diagnosed to the time they finished filling out the questionnaire.

This questionnaire measured health-related quality of life through experiences in eight different areas: physical functioning, role limitation due to physical problems, general health, mental health, social functioning, vitality, bodily pain and role limitation due to emotional problems.

It was found that 48 percent of the women in the study had to decrease their work schedules due to endometriosis. Overall, 51 percent reported having their job be greatly affected at some point in time.

Within the group of women who had significant others, 67 percent had large issues arise with a partner. And 19 percent said that endometriosis played a role in divorce.

The researchers also discovered that 57 percent of the women still had painful menstrual cycles, 47 percent reported painful sexual intercourse and 60 percent still had chronic pain after treatment.

Overall, 71 percent of the women still suffered from at least one of the three painful symptoms.

Overall quality of life was determined based on the combined data gathered from both questionnaires. The researchers saw a significant decline in the quality of life for all age groups within the study population.

It should be noted that all the women in the study population had undergone multiple hormonal treatments and fertility treatments, and most had had surgical treatment. Yet the majority of the study population still experienced symptoms that interfered with their everyday lives.

The study concluded that endometriosis is truly a chronic disease that continues to affect women's quality of life even after treatment. The authors argued that this finding points to the fact that endometriosis can't be cured, but rather controlled.

In addition, the study's authors suggested that women need to directly address the sexual, emotional and social problems associated with endometriosis. It's important to work on the personal aspects of this disease, such as building a healthier and more open communication with intimate partners about emotions and sex. It's also recommended that women and employers discuss strategies to manage any issues in the workplace more effectively.

Ultimately, the study concluded that endometriosis will continue to greatly affect many women's overall quality of life regardless of treatment or level of care. The authors of this study encourage all women with the disease to address all areas of life that are affected by discomfort in order to build a stronger well-being and quality of life.

This study was published online in the July 11 edition of Human Reproduction. The World Endometriosis Research Foundation provided funding.

Review Date: 
July 26, 2013
Last Updated:
August 9, 2013