I created a small anonymous survey with 10 questions and posted it across various online support communities, receiving 25 responses. The aim of this survey was to gather real experiences from individuals living with endometriosis, allowing me to identify the challenges, gaps in support and common themes associated with living with a chronic condition. I made sure to give participants the option to skip any question and the final question was left open-ended to gather ideas and suggestions for features that users would find helpful.

My first question was to see whether or not participants had used an app before in relation to tracking their health, period or wellbeing. 80% said yes, and only 20% said no. These results show that the majority of participants have used some sort of app to manage or track an aspect of their health or condition. This indicates need more focus on individual needs of users as everyone will different challenges to address.

Next, was asking if participants had used any type of support before to help them cope. 72% said yes, and only 28% said no. A large proportion of people have reached out for some type of help. The smaller proportion may have wanted support but didn’t know how to access it or felt embarrassed or thought their feelings weren’t valid. This highlights the need for a non judgemental space for women to share their experiences.

Following this, was looking at how supported do you feel from those around you. This was quite a mixed response with 48% of participants said somewhat supported, 24% said not very supported, 16% said very supported and only 12%. These findings show that everyone will have a different support system around them some bigger than others, but making sure no one should suffer in silence and be afraid to have someone to go to.

This question looks at how often endometriosis affects participants overall wellbeing. Over half of people, 60% answered very often, 28% responded often and only 12% said rarely. The results shows that endometriosis can have a frequent impact on a person’s having to manage your physical health as well as your mental health.

When managing a flare-up, participants most often found rest and taking time for themselves helpful. This is understandable, as pain can be emotionally draining and limit what they can do. Other common responses included using online resources or apps and connecting with others who have endometriosis. This highlights the importance of relating to others and accessing advice when needed. Some participants also spoke with friends or family or got professional help. The most helpful coping strategies vary depending on the severity of each flare-up.

This question was asking how endometriosis affects relationships with others. Nearly half of respondents 48% said “somewhat negatively,” 36% said “very negatively,” 12% said it had no effect, and only one participant said “somewhat positively.” The responses were mostly negative, which could highlight how a lack of awareness or understanding of the condition may affect relationships. Some people might not fully understand what the person is going through or know how best to approach and be there for them.

All areas of support are important, but work, education and relationships received the most responses, suggesting these are the areas where people need the most advice. Mental health, emotional health, diet and lifestyle were the second most common, showing that overall well-being is also important. Fertility and reproductive health received fewer responses, possibly because people are less concerned about these areas until a problem arises. This suggests that more awareness may be needed to encourage people to seek support earlier.

This section explored how often people felt alone because of their condition. Over half of respondents (52%) said they felt isolated very often, while 24% said often and 20% said sometimes. Only one respondent said they rarely felt isolated. These findings show that many women regularly feel like they are on their own, highlighting the importance of providing support and ensuring they know where to turn when they feel this way.

In regards to, how often you feel other people understand what you’re going through, 72% of people said rarely, 12% of respondents said never, while the same percentage said sometimes and only one said often. This suggests that endometriosis can be difficult for others to understand, highlighting the need for greater awareness of the condition and its impact on women’s everyday lives.