What was the beginning of your endometriosis journey like before you knew what was happening?
I anticipated painful periods due to family history but I was not prepared for how bad it got. I frequently missed school, would throw up from the pain, was bedridden with “cramps” and bled heavily.
When were you diagnosed, and what was your journey to getting diagnosed like?
I wasn’t formally diagnosed until 2021. The road to get there involved a lot of medical gaslighting and being told what I was experiencing was normal. I saw multiple gynaecologists, an endocrinologist, urologist, had multiple ultrasounds and MRI’s spanning almost a decade before being referred to an endometriosis specialist.
What did it feel like to finally have a name for what you were experiencing?
I felt relieved and validated, I wasn’t crazy and it wasn’t all in my head.
How does endometriosis show up in your body and daily life?
I struggle with extreme pain and fatigue. I live in an unpredictable body and that makes it hard to plan my life. I struggle with feeling overwhelmed, like a burden, I worry people don’t believe me. I think I often mask and downplay how I’m actually feeling to make the people around me more comfortable.
How would you describe the pain or physical challenges of endometriosis?
It’s debilitating, it has affected every facet of my life. I experience extreme pelvic pain that radiates down my legs and into my lower back. I now also have pain up under my ribs. I experience bowel issues, bladder issues and nausea from my endometriosis. It feels as though I have a brick sitting in my pelvis, I have sharp pain where my ovaries sit and this unbearable dull ache down my legs and into my back.
Do you have “good days,” and if so, what do they look like?
My good days are the days I have lower pain, it’s never truly gone, just less. A good day means I can get through a social event and enjoy it, I can do my errands or clean my house and feel productive, a good day is walking my dog.
How has endometriosis affected your education, work, routines, or ability to make plans?
My ability to make plans always comes with the caveat of “if I feel okay” I can do it. I haven’t been able to pursue career growth the way I want because of my endometriosis. I haven’t had the energy to pursue opportunities and I haven’t felt like I can risk the stability and support from my management in my current role.
Has endometriosis had an impact on your finances or access to care?
Yes, I spend a lot of money on supplements, I’ve had to modify my diet to avoid food that flares my endo. I have spent money and time on alternative pain relief options.
What has your experience been like with doctors, specialists, and navigating the healthcare system?
It has been demoralizing and difficult. I have a great team of specialists but I am treated as drug seeking or as too complicated of a case to treat if my endometriosis flares result in an emergency room visit.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
It’s been difficult and has only slightly improved my quality of life. Surgery helps the most but it is a long process and wait to get surgery. Supplements, diet and medications help in varying degrees but it’s not consistent or reliable.
What has it been like to live with a condition that often isn’t visible to others?
It’s isolating honestly, I feel like people don’t understand how debilitating this is. I feel like people get annoyed with how often I feel unwell and I have to downplay what I experience to make them more comfortable. I push through daily, I am in pain daily, I have lost so much and feel like I continue to miss out on so much life I want to live and experience.
Have there been times when you felt dismissed or not believed about what you were going through?
Absolutely, other than my family doctor and surgeon, most other medical professionals diminish how severe endometriosis is. Strangers, friends and others make comments such as “oh my friend has bad periods too” like it is comparable. I’ve been asked to come to things anyway when I try explain how much pain I’m in and why I can’t leave my house.
What has the emotional or mental side of living with endometriosis been like for you?
I struggle with my mental health frequently. I want to live and I want to be here but this isn’t what I signed up for. I don’t want to live the rest of my life like this. It’s so defeating to have something work only for it to stop working, for me to do everything perfectly and still have a flare. I miss the version of me that wasn’t scarred, that wasn’t constantly in pain, that lived.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I feel like my body betrays me, it’s unpredictable. I’ve lost weight and gained weight, I don’t feel as strong or as capable and live in a certain amount of fear of triggering a flare.
How has endometriosis affected your family relationships, friendships, or dating life?
I have had friends not understand and diminish my experience, act like what I live with is a burden on them. I think it’s hard for my family and partner to see me go through everything, to not be able to take the pain away.
Has endometriosis had an impact on intimacy or your sexual life?
It’s hard to feel sexual or desirable when I have endo belly, when I’m in pain, experience digestive issues, gain weight. Sex itself can be scary and uncomfortable, will it hurt? Will it cause a flare?
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
I had a hysterectomy at 29, and as of now at 32 I have decided not to pursue fertility treatments such as freezing my eggs. I don’t want to put my body through more than I already have.
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
I try and find the joy in day to day moments and make the best of my good days. I have a gratitude journal, I spend time with my loved ones in whatever capacity I’m capable of. I also allow myself to be angry and frustrated, to cry and hate this.
Do you feel supported in your journey? Who or what has helped you most?
I do feel supported, my family is incredible, my mom especially has been my biggest supporter. My partner is incredibly supportive and he strives to learn and help me in any way he can.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
Yes, I try and be a support for anyone I meet who has it as well, to share knowledge and resources. It’s been a pretty positive experience, I try and be the person to others that I needed for myself.
How has your relationship with endometriosis changed over time?
I think as I’ve gotten older I’ve accepted that this has changed me and found some relief in that. It’s the roommate I didn’t want but have to live with so I stay current on research and I stay open to all potential solutions for relief.
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I think the medical community is very behind, I think there is still a misogynistic view towards it that needs to change.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I think it’s viewed as a silly women’s health thing, I do think it is changing as more women speak out about it. I think things are starting to move in the right direction but it is moving far too slowly.
What would you like more people to understand about endometriosis?
That this is a full body disease that affects all parts of someone’s life. That it is incredibly debilitating, and a serious diagnosis. That endometriosis often occurs alongside other serious illnesses.
When you think about the future, what fears, concerns, or hopes do you have?
I try my best to stay hopeful and positive for the future. I have hope that the medical community will continue to progress in research and knowledge. I worry that there wont be enough research in my lifetime to benefit me.
Is there anything else you’d like to share?
Be the change you’d like to see, I know you’re exhausted, I know you’re in pain, but we move forward when we show support. Talk to a friend, share your experiences, fight for legislative action, offer to listen, try new remedies. Even small actions matter.