What was the beginning of your endometriosis journey like before you knew what was happening?
I would get excruciating ovulation pain thinking it was a good sign of fertility. I would get bowel pain and always thought I had IBS or was allergic to dairy.
When were you diagnosed, and what was your journey to getting diagnosed like?
I was diagnosed at the age of 32. It took years of a heart breaking fertility journey with multiple miscarriages and a failed IVF cycle to finally discover my endometriosis.
What did it feel like to finally have a name for what you were experiencing?
I felt relieved to have answers but also angry that no one ever thought to check for it given my history. I felt sad and that my fertility had been damaged.
How does endometriosis show up in your body and daily life?
I have silent endo or mild symptoms but I feel angry that this silent disease has been quietly robbing me my entire life and I have had no clue.
How would you describe the pain or physical challenges of endometriosis?
My ovulation pain is debilitating, it hurts to walk, breathe and function during ovulation. And sex is an absolute no go because I am in pain and so inflamed.
Do you have “good days,” and if so, what do they look like?
Yes I have good days, which I treasure. I enjoy getting out in the sun, walking and zoning time with those I cherish most.
How has endometriosis affected your education, work, routines, or ability to make plans?
Endometriosis has sent me down a health spiral trying everything and anything to try and restore my fertility and over active immune system. It has left me feeling depressed and ashamed that my body is actively fighting against something I have always dreamed of becoming, a mother.
Has endometriosis had an impact on your finances or access to care?
Yes! Thousands on supplements, surgeries, fictional medicine doctors.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
When I finally got connected with an endometriosis specialist I finally felt heard and seen. It was the first time my problems finally made sense.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Surgery was really rough and recovery was hard! Lifestyle changes have been hard to keep up with and to stay on top of.
What has it been like to live with a condition that often isn’t visible to others?
It’s hard because no one really understands the pain, and struggles it has caused me. Most people think it’s just “ period cramps “ but really it’s full body systemic inflammation and pain which is debilitating at times.
Have there been times when you felt dismissed or not believed about what you were going through?
During my first failed IVF cycle I mentioned to my REI that I think we should look into endometriosis and he said, “ everyone wants to blame infertility on endometriosis, but it doesn’t affect fertility “…….
What has the emotional or mental side of living with endometriosis been like for you?
I feel extremely heartbroken and sad that i went years without knowing what was going on in my body and that my endo was silently destroying my chances of becoming a mother… I feel like it’s my fault and carry the shame of not being able to conceive.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I feel like endometriosis has robbed my chances of becoming a mother, I spent years trying to get a flat stomach only to find that basically impossible because I have endo belly
How has endometriosis affected your family relationships, friendships, or dating life?
It’s made me resent some of my friends who have been able to conceive naturally with ease and even family members too.
Has endometriosis had an impact on intimacy or your sexual life?
My sex drive is basically non existent and it makes me sad that I don’t have the desire for sex anymore even though I’m only 33
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Endometriosis has made starting a family nearly impossible…. I’ve experienced 3 miscarriages naturally, three IVF cycle with 34 embryos and none of them making it to blastocyst. Endometriosis has robbed me of my dream of becoming a mother. It has been devastating
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Not really
Do you feel supported in your journey? Who or what has helped you most?
Talking with my endo specialist has helped a bit but I don’t fully feel supported
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes, my sister has it and I have friends who have it.
How has your relationship with endometriosis changed over time?
It’s made me more aware of why certain things are happening in my body. It’s made me more aware of systemic inflammation and my over reactive immune system
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
The general medical community sees endometriosis as a period problem… endometriosis behaves identically to cancer without it being cancerous although it cause debilitating pain and painful daily symptoms that often get dismissed
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I would like more people to know the facts! Stop calling it retrograde menstruation…. It is so much more than that and if people were truly educated on endometriosis then they would probably have more compassion and empathy for those who have the disease.
When you think about the future, what fears, concerns, or hopes do you have?
I’m terrified of never becoming a mother because of endometriosis