Lessons from the 2021 Endometriosis In America Survey: Why We Need Better Treatment Options

There is no cure for endometriosis. However, there are options to help relieve symptoms. Treatment options can vary depending on age, symptoms, or the stage of endometriosis.

In our 2021 Endometriosis In America survey, we explored treatment options and treatment satisfaction within the community. More than 1,000 people with endometriosis completed the survey and shared their experiences.

Current treatment options do not work well enough

Only 15 percent of survey respondents feel their endometriosis is well-controlled by their current treatment plan. Respondents were not satisfied with their current treatment, including over-the-counter pain medicine, hormonal therapy, surgery, or alternative therapies. This feedback highlights the inadequacy of current endometriosis treatment options.

Satisfaction with hormone therapy is low

Hormone therapy is often used to manage endometriosis symptoms. About 45 percent of respondents said they are currently on hormonal therapy, while half have been in the past. However, most are not satisfied with the treatment.

• Only 19 percent said hormone therapy has worked well in helping manage endometriosis symptoms
• 38 percent have trouble tolerating hormone therapy

That dissatisfaction becomes more alarming knowing that half of those who have used hormone therapy have tried more than 4 hormone therapies, and 25 percent have tried 7 or more hormone therapies.

Side effects are a deterrent

Side effects from hormone therapy range from annoying to life-altering. More than 40 percent of endo warriors who do not currently use hormone therapy say they are worried about side effects. Possible side effects that cause concern include:

• Blood clots
• Depression
• Anxiety
• Energy loss
• Bone density loss
• Cancer
• Infertility
• Stroke
• Weight gain

Another common reason that endo warriors are not currently on hormonal therapy is that they simply do not want to take hormones. Other reasons include:

• 42 percent are concerned about side effects
• 39 percent say they do not want to take hormones
• 27 percent are trying to get pregnant

Treatment options are limited

Hormones can be effective in reducing endometriosis pain, but they are not a permanent fix. Many endo warriors say treatment options feel inadequate.

• 60 percent said hormone therapy seems like one of the only treatment options for endometriosis
• 76 percent wish there were treatments other than hormone therapy

Some endo warriors said they prefer to use natural remedies to help control endo symptoms and flares. Many are interested in learning about diet and nutrition for endometriosis.

• 43 percent would rather make lifestyle and diet changes than take a prescription medicine
• 60 percent are seeking information on diet or nutrition for endometriosis

Surgery is commonly used as a treatment option

Surgery is an extremely common treatment option for people living with endometriosis. Some respondents tried hormonal therapy before surgery, but about 1 in 4 did not.

• 23 percent used hormone therapies for 1 year or less before their first endometriosis surgery
• 34 percent used hormone therapies for 2 to 10 years before their first surgery
• 13 percent used hormone therapy for 10 or more years before their first surgery
• 24 percent did not use hormone therapy before having surgery

The 2021 Endometriosis In America survey was conducted online from February through March 2021. The survey was completed by 1,027 people.