We Asked, You Answered: What YOU Want To Learn More About Endo: Part I

Endometriosis can be a painful and debilitating disorder that leaves people feeling isolated from loved ones. Managing symptoms, treatments, and diet can feel like a full-time job.

We wanted to take some of that burden off of community members by sharing information on the topics you expressed being most interested in when asked via our Facebook community page. In this article, you will find helpful details and statistics compiled from our 2020 Endometriosis In America survey. Additionally, you will find links to relevant articles that address these topics and common endometriosis questions.

Mental health

Managing endometriosis and its symptoms can be physically and emotionally draining. Many survey respondents say they feel powerless against endometriosis, and it makes them feel like giving up. Nearly 70 percent of respondents say they need emotional support.

• 56 percent have anxiety or a panic disorder
• 50 percent have depression
• 9 percent have a mood disorder

Endometriosis can affect quality of life and mental health. Talk to a loved one if you are feeling anxious, worried, lonely, or depressed.

Read more:
Coping with Endometriosis: Mental Health and Well-being
With Endometriosis, Your Mental Health Matters
Endometriosis Pain Increases Mental Health Risks

Surgery for endometriosis & life after a hysterectomy

Nearly 50 percent of respondents living with endometriosis do not believe that a hysterectomy can treat endometriosis symptoms. That is a fair concern, as survey respondents say effectiveness of surgery is relatively low.

• 37 percent say a radical or total hysterectomy with salpingo-oophorectomy (surgery to remove one or both ovaries and fallopian tubes) was effective in treating their symptoms
• 35 percent say a hysterectomy was effective for them
• 32 percent say a partial hysterectomy was effective for them

While hysterectomy is not a cure for endometriosis, it may help with pain. Many respondents had a reduction in pain after surgery. Others say their endo pain went away after a hysterectomy.

The majority of survey respondents say they did not have complications from surgery. Of those who did, they had adhesions, bladder infections, heavy bleeding, nerve damage, and pain.

Read more:
Community Views: Post-Hysterectomy Pain
7 Tips for Post-Laparoscopic Surgery Recovery
Post-Hysterectomy Hormone Replacement Therapy
A Hysterectomy Doesn’t Cure Endometriosis
Community Experiences: Hysterectomies

Extra-pelvic and deep infiltrative endometriosis

Extra-pelvic and deep infiltrative endometriosis might not be as rare as once thought. More than 50 percent of respondents say they have deep infiltrative endometriosis. One in 4 have had endometriosis spread outside of their abdomen to areas like their:

• Appendix
• Bladder
• Bowels
• Colon
• Diaphragm
• Liver
• Lungs
• Ovaries
• Rectum

Read more:
Study Shows Extra-Pelvic Endometriosis Probably Not Rare
Reproductive Organs That Can Be Affected by Endometriosis
Deep Infiltrating Endometriosis: Rare or Just Underdiagnosed?
Endometriosis of the Kidneys and Bladder

The 2020 Endometriosis In America survey was held online January through March 2020. The survey was completed by 1,234 people who have been screened to have endometriosis symptoms.