User Interview

I completed two user interviews, to get a better understanding of what it is like to live with endometriosis, from people who experiences it first-hand. I wanted to learn more about the challenges they face, and how the condition impacts their everyday life.

These interviews were informal conversations, and the responses have been written up in a simplified format while keeping the main points shared.

User Interview 1:

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The first interview was from someone who has been diagnosed with endometriosis after 10 years, but is still awaiting surgery.

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1. Can you tell me a little about your experience of living with endometriosis?

“It has been extremely difficult, painful, and frustrating. Managing my pain can be challenging and coping with it can feel overwhelming.”

2. What do you find most challenging about managing endometriosis in your everyday life?

“Endometriosis is very unpredictable, so you never know how you are going to feel hour after hour. There is a lack of support for pain and misunderstanding. I've had to leave my job.”

3. How, if at all, has endometriosis affected your emotional well-being?

“I feel I have no control over my body and constantly being in pain is frustrating and depressing. I have anxiety leaving the house incase there is no toilet near by, or have to walk far because the pain in my legs is so bad.”

4. How has endometriosis affected your relationships with friends, family or partners?

“My partner has became my carer and I rely on him for daily tasks even showering on flare days. I feel guilty asking for help or feel like a burden. I have to cancel so many plans, due to being unwell and can't see friends because of this.”

5. What do you find most helpful when you are having a difficult day because of endometriosis?

“People providing food and drinks, filling my hot water bottle up. Listening and providing a shoulder to cry on. I have prepared a small bag of essentials beside my bed, so if I get stuck there I have those to hand. Painkillers to just get up and about.”

6. Where do you currently go for information, advice or support about endometriosis?

“I'm waiting on a laparoscopy from the NHS, I have had 2 private gynaecology consultant appointments for diagnosis. Endometriosis UK and TikTok is helpful, and I've set up my own support group in my area as I was feeling so lost.”

7. Have you ever used an app or online resource to help manage your health or well-being? What was your experience like?

“Yes, sometimes it is confusing and overwhelming, trying to find information is hard.”