What was the beginning of your endometriosis journey like before you knew what was happening?

I thought it was completely normal just like everyone else. I’d never heard of it before I was diagnosed. Periods normal no red flags. Then I started to get excruciating pain.

When were you diagnosed, and what was your journey to getting diagnosed like?

6 years ago. Not as long as some people but it still took a lot. Lots of scans, internal and external, mris. Misdiagnosed with ibs. Talked about retrograde menstruation. Had to chase hospitals was referred to 3 different hospitals.

What did it feel like to finally have a name for what you were experiencing?

Bitter sweet. I wasn’t going mad and I had a diagnosis but I didn’t want it at the same time.

How does endometriosis show up in your body and daily life?

Twinges, sciatica, pains, bleeding after sex, feeling like I need to crack my knees. Pains in lower back. Difficulty urinating. Difficulty having bowel movements. Brain fog. Anxiety. Unable to conceive naturally. Post code lottery for IVF funding. Mood swings. Feeling crazy. Fatigue. Depression. Tiredness.

How would you describe the pain or physical challenges of endometriosis?

At its worst unbearable. You would do anything to make it stop. Like someone ripping your insides out. Stabbing in stomach stabbing up the anus. Feeling sick. Hot sweaty. Like bad period pain with indigestion and a kidney infection at the same time. Rolling around on the floor.

Do you have “good days,” and if so, what do they look like?

On good days I have no pain. But I still have fatigue, aches, brain fog.

How has endometriosis affected your education, work, routines, or ability to make plans?

I push through but have had time off from work, cancelled plans. Always having to prepare and take my wheat bag and tense machine with me. As well as my pain killers. Feeling like a failure. Having to work harder than everyone else.

Has endometriosis had an impact on your finances or access to care?

A little bit in buying wheat bag and tense machine.

What has your experience been like with doctors, specialists, and navigating the healthcare system?

Terrible. Having to chase up everything. Was meant to be on waiting list for operation but they told me there had been an error and I had been waiting for 4 years not being on a waiting list. Numbers changed no one gets back to you. Hours of time on phone. Exhausting. Had my appendix removed for no reason. Only recently are they talking more about and understanding about fertility where before they wouldn’t even talk about it. Having to pay privately for tests. Paying privately for ivf.

What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?

There is no treatment. Had 2 surgeries. Been on 3 different medications. Tried gluten free. Tried a Mediterranean diet. Tried crystals. Reflexology.

What has it been like to live with a condition that often isn’t visible to others?

Awful

Have there been times when you felt dismissed or not believed about what you were going through?

Yes

What has the emotional or mental side of living with endometriosis been like for you?

Exhausting. Anxiety depression. Fertility issues. Seeing everyone else pregnant or with children.

How has endometriosis affected your relationship with your body, identity, or sense of self over time?

Feel governed by the conditions blamed myself. Lost me.

How has endometriosis affected your family relationships, friendships, or dating life?

A lot even with a supportive husband and family. Guilt. Why me.

Has endometriosis had an impact on intimacy or your sexual life?

Yes

If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?

Lots. Feel let down. People can have lots of procedures on nhs why not ivf. It’s not my fault. I just want a baby. Been told better to not use my eggs next round. Wished I’d known sooner.

Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?

No

Do you feel supported in your journey? Who or what has helped you most?

My family and husband.

Have you connected with others who have endometriosis, either online or in person? What has that experience been like?

Not really.

More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?

Only recently has it become popular to talk about. It doesn’t prioritise.

How do you feel endometriosis is represented in society or the media? What would you like to see change?

A lot only recently. Free ivf. Been declined pip however other people get it that do not need it.

What would you like more people to understand about endometriosis?

Brain fog and fatigue

When you think about the future, what fears, concerns, or hopes do you have?

Not being a mum. Having to have another op.