Treatment Regrets: The Challenges of Treating and Managing Endometriosis

Endometriosis is a difficult disease to treat. As an estrogen-dependent, inflammatory, and typically progressive condition, options for treating and managing endometriosis range from hormone therapies to surgeries to complementary & alternative treatments. While laparoscopy is the gold standard for endometriosis treatment, our Endometriosis.net community members have tried a wide range of pills, medications, surgeries, and therapies to control their pain and symptoms. And, some have had more success than others.

Because endo recurrence is fairly common, many endo warriors have tried multiple birth control methods or surgeries in the past. According to our 2020 Endometriosis In America data, only 13% feel their endometriosis is controlled under their current treatment plan*, and many have regrets about how their endometriosis has been treated or managed.

Which treatments do endo warriors regret?

Our community members shared a wide range of treatment experiences and regrets. These regrets include specific surgeries or medications (such as hysterectomy and Lupron), not seeking a second opinion, or not asking for alternative treatment options.

When we took a closer look at endo warriors who strongly regret or regret their treatment decisions, some interesting trends emerged. For example, women who regret their treatment experiences were more likely to have used Lupron in the past. Additionally, women who regret their treatment experiences were more likely to have had 4 or more laparoscopies for endometriosis.

When looking at the women who are relatively happy or happy with their treatment decisions, we saw that these respondents are more likely to strongly agree that hormone therapy has worked well in helping them to manage their endo.

Does symptom frequency impact treatment attitudes?

The frequency and severity of symptoms may also inform regrets about treatment. For example:

• Women who are happier with their treatment experiences are more likely to currently experience few or no symptoms
• Women who have regrets about their treatment are more likely to have more frequent symptoms - or more severe symptoms

Past regrets for a current problem

Regrets about past treatments may also inform how endo warriors treat and manage their endo today. For example, women who regret their treatment decisions are more likely to strongly agree that they have tried everything possible to manage their endo, but that their endo is still not controlled. Similarly, women who regret their treatment decisions are more likely to say that endometriosis makes them feel like giving up, and are more likely than those happy with their treatment to feel that people think their symptoms are “all in their head".

Better treatments are ahead

While many endo warriors have struggled with ineffective or inadequate treatment options, many are also hopeful for better treatment options in the future. As endometriosis research continues, and awareness and advocacy efforts grow, we hope that better and more effective treatment options will become accessible to our endometriosis community. Until then, we hope that Endometriosis.net can provide the information, resources, and support needed, as well as a place for endo warriors to connect and share their own treatment experiences.

Do you have regrets about your endometriosis treatment and management? Comment below to share your experiences! You can also read comments from other endo warriors and share your own experiences on Facebook.

*Top 2 responses on 7 point scale