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

I always knew that the pain i felt was not normal but nobody believed me. Everyone thought I was a cry baby.

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

2 years ago at age 38 I was diagnosed with endo. I did a lot of scans before that, went to different gynaes and I stopped at some point because what was the use of spending a lot of money on doctors. At some point I thought maybe its in my head, what if I am not sick.

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

Relieved, I cried so much. Atleast It had a name .

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

Im in pain everyday the whole day, I am exhausted all the time. I only wear black pants because my period is not regular and I have a fear of soiling myself.

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

Its crippling, I can’t focus on work and school. My body hurts all the time and I’ve started experiencing sciatica.

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

Once in a while I do, I grieve on those days because God did not find me worthy to experience more of those days.

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

Yes, I dont go out anymore. I have not submitted my school assignments that are due. Im always late for work because im hardly getting enough sleep and my body hurts like hell in the morning.

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

Yes, spent a lot of money trying to find out whats wrong with me.

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

They dont care

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

Only had 1 laparascopy which gave me the diagnosis. They told me I would feel better after it but it was worse. As a result I will not undergo anymore surgeries.

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

Hell, I hate my life.

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

All the time, nobody believes me

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

Im sad all the time, no longer confident. Im depressed

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

Yep, I have the endo belly that is not going away.

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

My husband is a good guy but he underestimates my pain and what I go through, we fight a lot because of it.

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

Yep, everything hurts

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

It took 5 years to conceive. Sigh

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

I am a part of endometriosis groups on Facebook and it feels good to know that I am not the only one

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

My husband , he is supportive but he doesnt get it sometimes.

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

Yes, i feel good knowing I am not alone

How has your relationship with endometriosis changed over time?

Sigh

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

It means nothing to them, a female gynae once told me I should get used to pain

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

There is no representation at all, its as if it doesnt exist

What would you like more people to understand about endometriosis?

We not making it up, it hurts. Be kind

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

My biggest fear is having my daughter get diagnosed with this disease. I pray for her everyday.