What was the beginning of your endometriosis journey like before you knew what was happening?
Scary. You’re in this debilitating pain from a young age where you can’t walk, or talk. It started around 15/16 and still almost 37 I’m getting prepared for my second laparoscopic surgery in August.
When were you diagnosed, and what was your journey to getting diagnosed like?
It took almost 15 years to get diagnosed. Not until my first surgery 5 years ago at the age of 32 did I know. Doctors constantly just want to feed you a birth control pill. I’m diagnosed with stage 2 endometriosis with pelvic adhesive disease. They found it in my colon, stomach and they were stuck together. On st paddy’s day I went to the er for endo pain where they found it on my bladder through imaging.
What did it feel like to finally have a name for what you were experiencing?
Like I’m not crazy.
How does endometriosis show up in your body and daily life?
There’s not a moment I’m not in pain. Whether it’s having to change my pants because the waistband hurts during a work day, or being too nauseous to eat.
How would you describe the pain or physical challenges of endometriosis?
It’s a living death. There’s no end in sight. No guarantee you can handle what’s planned in 4 hours let alone the constant cancelling of things. It hurts to pee. It hurts to sit. I can’t stand at all. Walking by myself is impossible.
Do you have “good days,” and if so, what do they look like?
I have about 1-1.5 good weeks a month. My house gets cleaned, my dog gets to play more, I can eat a full meal. I can get dressed and walk without holding things.
How has endometriosis affected your education, work, routines, or ability to make plans?
I have a back up heating pad in my desk drawer. I can’t visit my parents when I want due to being in the car too long. I have lost friends because I’m constantly cancelling plans.
Has endometriosis had an impact on your finances or access to care?
I had to leave my career in restaurants. It was too labor intensive for what I can handle anymore. Because of that I had to go into 9-5 life where I make in 1 week what I used to make in a weekend. Everything financial is effected.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
My first surgeon told me to get pregnant to handle my symptoms after surgery, in the same breath was told it will be hard for me to conceive naturally. Multiple hospital visits ended with me in tears and told I have a muscle strain in my back. Multiple hospital doctors thinking I’m looking for pain meds, when I just would ask for naproxen. My current dr gave me two options. Surgery or forced menopause. What 36 year old wants to hear forced menopause.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
I take anti-inflammatory medication every month for 2 weeks at a time. I’m scheduled for my second surgery in August and we will see what the next step is.
What has it been like to live with a condition that often isn’t visible to others?
I’m constantly defending myself even to my own spouse. You sound insane or like a liar. It’s always something that interferes.
Have there been times when you felt dismissed or not believed about what you were going through?
Every single day.
What has the emotional or mental side of living with endometriosis been like for you?
The depression alone will keep you from speaking to anyone. It makes you think about the life you dream and how it might not happen. Not just for you, but it’s like you’re mourning for your mother who might not be able to hold her grandkids one day.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
The one thing as a woman you’re raised to know, your body is this vessel for life. I feel like I’m a failure as a woman to not even know if I can have children. I cry all the time.
How has endometriosis affected your family relationships, friendships, or dating life?
I come off as a flaky friend but in reality I just can’t keep telling people I’m in too much pain to do something.
Has endometriosis had an impact on intimacy or your sexual life?
Sex hurts on bad months. I’m scared to even try sometimes.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
Endo is always at the forefront of my mind. I cried in the baby clothes section at target atleast 3x since I booked my second surgery. I booked 2 weeks ago.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Heating pads. I stay away from gluten which helps a lot with the inflammation
Do you feel supported in your journey? Who or what has helped you most?
I have support but don’t feel supported. My family moved up north so I am on Long Island solo. My bf gets it to an extend. Up until recently his family still thinks this is just a bad period.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I’m part of a support group on Facebook but that’s it. It’s nice to know I’m not alone
How has your relationship with endometriosis changed over time?
I trust my body more now but I am still learning how to cope.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I think there needs to be more support. More options. Stop dismissing us. We’re not seeking pills, we’re not faking, this isn’t a bad period.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I think the more we talk about the more women will feel safe sharing.
When you think about the future, what fears, concerns, or hopes do you have?
I hope if my worse fear comes true that I can emotionally be ok. I hope in the near future or atleast in my lifetime there is a plan to help.