What was the beginning of your endometriosis journey like before you knew what was happening?
Ever since I was 11 years old, I had horrific cramps, nausea and just general feelings of malaise. I got sent home from school at least once a month because the pain was so bad, I could barely keep my head up. That’s a lot of missed school days.
When were you diagnosed, and what was your journey to getting diagnosed like?
I saw several doctors, many of whom told me things along the lines of ‘you’re too young for endometriosis’, ‘it’s a weak pelvic floor’, ‘get pregnant, it’ll make the symptoms go away’ and I was even accused of drug seeking. I have spent many, many days in agony and still do because I feel like I’m never going to be taken seriously. Finally, I had the surgery, but even that didn’t fix my symptoms. Once again, I was back to square one.
What did it feel like to finally have a name for what you were experiencing?
I actually got the name from a coworker who described her symptoms to me and they matched mine perfectly. I was 18, already had been just dealing with the pain for seven years thinking that’s just how it was supposed to be or I was just being dramatic, and to hear that may actually be a debilitating condition made me feel like I was finally being listened to.
How does endometriosis show up in your body and daily life?
Migraines, nausea, hot flashes, cramps, constipation, the works. Sometimes I have relatively normal periods where I have one difficult day and other times, I’m incapacitated for a week. It’s a normal thing, my coworkers and bosses are all aware of it and how it affects my life and for the most part, those around me are sympathetic.
How would you describe the pain or physical challenges of endometriosis?
Horrific, agonising, debilitating, feelings of hopelessness and tired of ‘always being sick’ (another common thing I hear). It feels like Sisyphus’s boulder – and endless battle to the too.
Do you have “good days,” and if so, what do they look like?
Mostly feelings of discomfort. I wear a livia TENS unit which helps on my better days and it helps make the cramps almost negligible.
How has endometriosis affected your education, work, routines, or ability to make plans?
As I said above, I had to miss a lot of days of school due to pain or sickness and I’ve also had to miss work because of it as well. I have to constantly be aware of when I’m getting my period and make plans around it, I can’t just schedule something and not look ahead at my watch’s cycle predictions for that month.
Has endometriosis had an impact on your finances or access to care?
Not really except for making me reluctant to go to a new doctor about it
What has your experience been like with doctors, specialists, and navigating the healthcare system?
A whole lot of disbelief and not being taken seriously. The school nurse used to roll her eyes when I got sent there for my severe cramps and other doctors just kept finding reasons for why I don’t have endometriosis that didn’t make sense.
What has your experience been with treatments, surgeries, medications, lifestyle changes, or other approaches?
Lifestyle changes do not help me, I don’t care if anyone says working out makes the cramps go away, it does not for me. Changing my diet didn’t work, medications didn’t work, birth control just made me sick and bleed every two weeks and the surgery fixed it temporarily but evidently, not permanently.
What has it been like to live with a condition that often isn’t visible to others?
Difficult. I’ve had boyfriends that didn’t understand it and my friends, who have normal period experiences, don’t take me seriously and don’t want to hear about it anymore. They say I’m ‘always sick’ – yeah, because periods tend to come every month.
Have there been times when you felt dismissed or not believed about what you were going through?
Constantly, and even now, I still do.
What has the emotional or mental side of living with endometriosis been like for you?
I have good days and bad days. I’m on two antidepressants now and it’s helped my emotional state but a lot of times, I have days where I just feel so hopeless of ever getting better.
How has endometriosis affected your relationship with your body, identity, or sense of self over time?
I’ve definitely learned to be proud of my anatomy as a female, but I often feel like endometriosis has become a personality trait of mine to other people and it adds to me not being taken seriously. It also really stumps my creativity
How has endometriosis affected your family relationships, friendships, or dating life?
I’ve lost boyfriends because of it, friends get annoyed when I mention it. My current boyfriend is very understanding and cares for me when I’m unwell.
Has endometriosis had an impact on intimacy or your sexual life?
Oh yeah, the pain has made me avoid sex many times.
If relevant to your experience, how has endometriosis influenced your thoughts, decisions, or experiences around fertility and family planning?
It’s made me concerned that I might not be able to have children one day
Beyond treatment, have you found anything that genuinely helps you cope physically or emotionally?
My cats are the one thing that get me through the pain. Just being able to pet them helps calm my nerves and soothes me. Sometimes watching a movie helps distract me and sometimes listening to music that I can get lost in helps.
Do you feel supported in your journey? Who or what has helped you most?
By my boyfriend 100%, he is very helpful and supportive and is very understanding of my situation. My parents have come around a bit, but I think a part of them still thinks it’s not as serious as it is.
Have you connected with others who have endometriosis, either online or in person? What has that experience been like?
I’m in a few endometriosis support groups, but most of the time, I feel very unheard. The groups have so many people that my posts will take months to get approved or it just gets lost in a sea of hundreds of other posts.
How has your relationship with endometriosis changed over time?
I’ve come to see it as a frenemy, almost. It’s a constant presence that I’ve learned to deal with. Sometimes, it gets the better of me, but most days, I can triumph over it
More broadly, what are your thoughts on how the medical community understands and prioritizes endometriosis?
I think the medical community doesn’t fully understand it, and perhaps some don’t want to. Periods are still pretty taboo to some people and they don’t want to deal with something they can’t easily see. There’s very little glory in studying a condition that hides very well and yet, causes so much damage.
How do you feel endometriosis is represented in society or the media? What would you like to see change?
I feel it’s underrepresented. This condition is extremely common and yet, so many don’t know what it is. I work at a high school and when I see my female students dealing with horrible periods and being sent home due to the pain, it breaks my heart knowing that they, like me when I was their age, think it’s just normal. I would like to see better education for endometriosis especially for teenage girls. I think sex education classes should mention conditions that affect the reproductive system like endometriosis, adenomyosis, etc. The boys need to learn it, too, and then perhaps women going through this in the future will have more understanding partners.
What would you like more people to understand about endometriosis?
That it’s a systemic condition that affects the whole body, not just the reproductive system. Hormones are all affected by each other and if one higher in the chain is messed up, everything else does, too, which messes up the rest of the body’s systems. And I want teen girls to understand that terrible, debilitating pain is NOT normal.
When you think about the future, what fears, concerns, or hopes do you have?
I worry that the condition still won’t be taken seriously, but my hope is that one day, someone will find a treatment that is not invasive, doesn’t involve taking hormones that often do not help.
Is there anything else you’d like to share?
I want to one day become a gynaecologist myself and be a part of the research that may one day cure the condition.