Endometriosis is a painful condition that affects millions of people, causing tissue to grow where it shouldn’t in the body. Researchers in Australia are testing a new online program called CodeEndo that was designed with input from patients and doctors to help people manage their symptoms and improve their quality of life. This study will compare people using CodeEndo to a group that waits to use it, measuring how much it helps with pain, mood, energy, and overall well-being over 8 weeks and 6 months. The research will also look at whether the program is worth the cost and how easy it would be for hospitals and clinics to use it.

The Quick Take

  • What they studied: Does an online support program called CodeEndo help people with endometriosis feel better and improve their quality of life?
  • Who participated: The study will include 352 people diagnosed with endometriosis in Australia. They will be split into two groups: one using CodeEndo and one waiting to use it.
  • Key finding: This is a study protocol, meaning the research hasn’t been completed yet. Researchers are planning to measure whether CodeEndo improves quality of life, reduces pain and anxiety, and helps people feel more confident managing their condition over 8 weeks and 6 months.
  • What it means for you: If CodeEndo proves helpful, it could offer people with endometriosis a convenient online option to manage their symptoms alongside regular medical care. However, we need to wait for the results before knowing how much it actually helps.

The Research Details

This is a hybrid type 1 randomized controlled trial, which is a fancy way of saying researchers will randomly assign people to either use CodeEndo or wait for 8 weeks (the control group). Half the participants (176) will get access to CodeEndo right away, while the other half (176) will be on a waitlist. This random assignment helps ensure the groups are similar so researchers can fairly compare results.

The study measures success in multiple ways. The main measurement is quality of life—how much the condition affects daily activities and well-being. Researchers will also track anxiety, depression, stress, pain levels, fatigue, sleep quality, and how confident people feel managing their symptoms. They’ll check in at 8 weeks and again at 6 months to see if benefits last.

Beyond just numbers, researchers will interview up to 40 people who complete the program to understand what worked, what was hard, and why they might keep using it. They’ll also talk to doctors and healthcare providers about whether the program would actually work in real hospitals and clinics.

Endometriosis is a serious, long-lasting condition that affects up to 1 in 9 people assigned female at birth. It causes not just physical pain but also emotional stress, anxiety, and depression. Current treatment focuses mainly on medication and surgery, but experts say people need support for the whole picture—body and mind. This study tests whether an online program designed with patients’ input can fill that gap and help people manage better overall.

This study design is strong because it uses random assignment, which reduces bias. The researchers are measuring many different outcomes rather than just one, giving a complete picture of how the program affects people. They’re also looking at cost-effectiveness, which matters for real-world use. The study includes both numbers (surveys and measurements) and stories (interviews), which together provide better understanding. The research received ethics approval, meaning it meets safety and fairness standards.

What the Results Show

This is a study protocol, meaning the actual results haven’t been collected yet. The researchers are describing their plan before conducting the trial. Once completed, the main result they’ll measure is whether people using CodeEndo report better quality of life compared to those waiting. Quality of life includes how much pain affects daily activities, mood, energy, and ability to work or enjoy hobbies.

The study will also examine whether CodeEndo reduces anxiety and depression, which commonly occur with endometriosis. Many people with this condition struggle with mental health because of chronic pain and uncertainty about their symptoms. If the program helps with these emotional aspects, it could make a real difference in people’s daily lives.

Researchers will also track practical symptoms like menstrual pain, bladder problems, digestive issues, fatigue, and sleep quality. These symptoms often go together with endometriosis and significantly impact how people function. The program aims to help people manage all these connected symptoms, not just pain.

Finally, the study will determine if the benefits are worth the cost and whether doctors and hospitals could realistically use this program in their practices. This information is crucial for deciding whether CodeEndo should become available to more people.

Beyond the main quality-of-life measurement, the study will examine self-efficacy—basically, how confident people feel managing their own health and symptoms. This is important because people who feel more in control tend to have better outcomes. The program will also track exercise habits, diet, and sleep patterns, since these lifestyle factors affect endometriosis symptoms. Researchers will measure how bothersome symptoms feel to people, recognizing that two people with the same pain level might experience it very differently. The interviews with participants will reveal which parts of the program were most helpful and which parts people struggled with, providing insights for improving it.

Most endometriosis research focuses on medications and surgery, with limited research on psychological support and online programs. International guidelines recommend that endometriosis care should address the whole person—physical, emotional, and social aspects—but few programs actually do this. CodeEndo is unique because it was co-designed with patients, meaning people with endometriosis helped create it rather than experts deciding what they need. This approach is becoming more common in healthcare and often leads to programs that actually work better because they address real patient concerns.

This is a study protocol, so we don’t yet know if the program will work. The study only includes people in Australia, so results might differ in other countries with different healthcare systems. The program is online, which means it may work better for people with reliable internet and comfort using technology. The study doesn’t include people with very severe endometriosis or those unable to use computers, so results might not apply to everyone. The 8-week program is relatively short, so we don’t know if benefits last longer than 6 months. Finally, people who volunteer for online programs might be more motivated than the general population with endometriosis, which could affect results.

The Bottom Line

This is a study protocol, so specific recommendations aren’t yet available. Once results are published, people with endometriosis should discuss CodeEndo with their doctor to see if it might help alongside their current treatment. It appears designed to complement, not replace, medical care like medication or surgery. The program may be most helpful for people who want additional support managing pain, stress, and daily functioning. People should expect it to be one tool among several, not a complete solution on its own.

People with endometriosis who struggle with pain, anxiety, depression, or managing daily activities should pay attention to these results. Healthcare providers treating endometriosis should watch for this research, as it could offer a new tool for their patients. People who prefer online support or have difficulty accessing in-person therapy might find this especially useful. However, people with very severe endometriosis requiring frequent surgery or those without internet access might need different approaches.

The study itself will take several years to complete and publish results. Once available, benefits from using CodeEndo appear to be measured at 8 weeks and 6 months, suggesting people might notice improvements within 2 months if the program works. However, managing a chronic condition like endometriosis is a long-term process, and realistic expectations are important—no program will eliminate all symptoms, but it may help people cope better and improve quality of life.

Want to Apply This Research?

  • Track daily pain levels (0-10 scale), mood (good/okay/difficult), energy level, and which symptoms bothered you most that day. This creates a personal pattern that helps you and your doctor understand what helps and what doesn’t.
  • If using CodeEndo through an app, set daily reminders to complete the program activities. Start with just 10-15 minutes daily rather than trying to do everything at once. Track which activities you actually complete and which ones you skip, then focus on the ones that feel most helpful.
  • Weekly check-ins work better than daily for long-term tracking. Every Sunday, rate your overall quality of life, pain level, mood, and energy for the past week. After 4 weeks, compare your first week to week 4 to see if anything improved. Share this data with your doctor to adjust your overall treatment plan.

This article describes a research study protocol that has not yet been completed. Results are not yet available. This information is for educational purposes and should not replace medical advice from your doctor. If you have endometriosis, discuss any new treatment or support program with your healthcare provider before starting. CodeEndo is designed to complement, not replace, medical treatment including medication and surgery. Individual results may vary, and what works for one person may not work for another. Always consult with your healthcare team about what’s appropriate for your specific situation.