What was the beginning of your endometriosis journey like before you knew what was happening?
I had always felt something was wrong with me, I couldn’t keep up with my life at a normal pace, I was exhausted, tired and feeling like I was set up for failure each month before my moon time arrived. I saw several doctors but my concerns were often dismissed and I was told it’s just how it is for some women.
When were you diagnosed, and what was your journey to getting diagnosed like?
I spent years in a lot of pain, having to plan my calendar around certain days of the month and then things progressed entering early perimenopause with hormonal changes and I was unable to get out of bed most days due to severe pelvic pain. I asked to see a gyno and was initially offered birth control for regulation and sent home. I met a girl at the gym who said she had many of the same symptoms and that she was recently diagnosed with endo. She recommend another gyno and I advocated at my doctors appointment for a second opinion and she agreed. Finally I was seen by someone who took my concerns seriously and she sent me for a pelvic ultrasound where I was diagnosed with both advanced stage 4 endometriosis and adenomyosis. This was a difficult diagnosis to accept, but also a beautiful realization that I wasn’t crazy and that I knew my body better than the doctors told me. It took me almost 8 years of researching and advocating for my health to get this diagnosis.
What did it feel like to finally have a name for what you were experiencing?
I felt relief in some ways and it gave me a sense of peace to finally be able to move forward.
How does endometriosis show up in your body and daily life?
It affects my body, my mind and my soul on every level. Some days are better than others but having this diagnosis, I have learned to listen more to the rhythms of my body and honour what she needs. Some days it’s more rest, some days it’s shifting to a new perspective around what life looks like. But each day becomes a gift to look at how I can be present in the moment and show up regardless of what’s unfolding wether that’s pain, anxiety, inflammation, exhaustion or courage and gratitude for moments where I feel on top of the world.
How would you describe the pain or physical challenges of endometriosis?
The pain radiates through every part of my body. Some days it feels like a sharp jagged tool inside me and is ripping its way through every part of my guts, uterus, bowels and body until it’s done. There’s a point where you have to just surrender to the pain and allow yourself to know that there is another side to it.
Do you have “good days,” and if so, what do they look like?
On my good days I feel grateful for the moments that are pain free and I cherish that I have these highs because I have known so intimately the lows. On good days I feel inspired, cheerful and motivated to live life in the fullest way because not all days will provide such freedom.
How has endometriosis affected your education, work, routines, or ability to make plans?
I have a job where I can work my own schedule as a 9-5 Monday to Friday lifestyle just doesn’t work for me when I face these unpredictable flares.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
It’s challenging to say the least. I have to be most mindful around foods I eat and to ensure that I get enough sleep. Learning to listen to the rhythms of our bodies I believe is the key to navigating this condition but some days that’s easier to achieve than others. Pain medications are a god send on the worst days and sometimes a good epsom salt bath makes you feel like you can face another day.
What has it been like to live with a condition that often isn’t visible to others?
Everyone thinks there’s nothing wrong with you or family just thinks that simple things like diet and exercise will cure it. There’s far more beneath the surface with this condition that even doctors are just beginning to learn about so you often suffer in silence because most people have no idea how difficult and painful it is to live with.
Have there been times when you felt dismissed or not believed about what you were going through?
More times than I would like to admit
What has the emotional or mental side of living with endometriosis been like for you?
It’s a struggle to feel valuable and accomplished when you see others be able to achieve so much more than you while your putting in 10x the effort just to survive some days. But I remind myself that even in the depth of the struggle there is value and the ability to achieve in ways that perhaps most others will never see.
How has endometriosis affected your family relationships, friendships, or dating life?
Most people don’t understand the complexity that is faced with this condition and it can be challenging to sustain friendships during intense fare ups.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
Magnesium glycinate high dose, Rosita cod liver oil and beef liver capsules have been something that has truly made an impact in my life. Beyond that EFT, meditation and Qigong have helped me to balance my mental health in a positive way.
How has your relationship with endometriosis changed over time?
I have found myself again through this journey and diagnosis.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
Its truly awful that this condition is as common as diabetes and receives only a fraction of the funding.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
People think it’s just a reproductive illness but it affects the whole body
What would you like more people to understand about endometriosis?
That you didn’t do anything wrong to deserve this and most women who have this live with one of the most painful conditions in the modern age.