What was the beginning of your endometriosis journey like before you knew what was happening?
My first period was painful. It just kept getting worse. I thought it was normal. I would leave class for the restroom and ball up in the stairwell for awhile
When were you diagnosed, and what was your journey to getting diagnosed like?
I was hospitalized for a nasty infection. My stomach was tender I had bladder infection, kidney, strep throat . After I was released my period started and my pain I don’t know if it was worse because I was told it would improve and I was not prepared or it was actually worse. But my mom took me to the ER . A approach was scheduled to treat what they thought would be treating an infection. They discovered lots of endo. Closed me up and started the hormone journey. Dr said he had never seen so much endo in a person my age. I started my period at 14 I was diagnosed at 16.
What did it feel like to finally have a name for what you were experiencing?
Happy to know that it was not in my head. Sad because my dad’s cousin suffered with it and had a hysterectomy at a young age.
How does endometriosis show up in your body and daily life?
I had a hysterectomy at 29. Best decision ever. I still suffer effects of scar tissue on colon.
How would you describe the pain or physical challenges of endometriosis?
I went through natural child birth 2 x. And all but the very end of labor was similar. When I got my hysterectomy I had immediate relief. I had incision pain but the screaming inside my head was silenced.
How has endometriosis affected your education, work, routines, or ability to make plans?
Post hysterectomy I am a rock star
Has endometriosis had an impact on your finances or access to care?
Pre hysterectomy yes but not post
What has your experience been like with doctors, specialists, and navigating the healthcare system?
I think my early diagnosis and family history has helped
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I had 4 laser surgeries before my hysterectomy. Hormones drove me crazy and emotional.
What has it been like to live with a condition that often isn’t visible to others?
It is my life I also have h-EDS so I still have issues I am good at pretending things are fine . I prefer people think I am playing or being lazy than think I am sick. I own it and we laugh about it.
Have there been times when you felt dismissed or not believed about what you were going through?
Yes by my husband…
Has endometriosis had an impact on intimacy or your sexual life?
It was painful pre hysterectomy
What would you like more people to understand about endometriosis?
It is invasive and painful. I did not appreciate how much so until I experienced life with out it.
When you think about the future, what fears, concerns, or hopes do you have?
That there will not be a cure or treatment for my daughter. She suffers
Is there anything else you’d like to share?
No