What are your endometriosis symptoms like?
My symptoms began when I started menstruating, at 11 yrs old. Symptoms: headache, body/muscle stiffness, sharp abdominal pains, extremely heavy periods, diarrhea during periods, nausea, abdominal cramping, excessive bloating, exhaustion, anemia.
What was your journey to diagnosis like?
I started menstruating at 11yrs old. By 13, I knew my long list of extreme symptoms couldn’t possibly be “normal”. I went to doctors, gynecologist, health clinics and spoke to nurses for almost 7 years. Each one telling me my experience was “normal”, “this is what a period is like”, “it’s all in your head just get over it”. Luckily I persevered, and around 19yrs old I found a gynecologist who didn’t dismiss me and actually listened. He diagnosed me almost immediately. And although there’s no cure, only symptom management, it felt validating to know there was actual medical proof of an issue.
What has your experience with treatment for endometriosis been?
I had an operative laparoscopy that removed lesions and abdominal growths. That procedure lessened some of my symptoms for a few years. But over time, the lesions and growths have increased. Otherwise, in my daily life I utilize a combination of diet and herbal supplements to cope with the long list of constant and chronic symptoms.
How does endometriosis affect your day-to-day life?
Because of endo, I’ve missed multiple full days of school, I’ve either left or called in sick to work, I’ve cancelled social engagements, I’ve had to plan vacations around my “extremely bad days”. It can be completely and utterly mentally exhausting to force myself to get up and get on with day with constant pain and extremely heavy periods. People tend to not understand. And many many times it’s turned into being labelled as weak, or being whiny or a complainer.
How does endometriosis affect your emotional well-being?
When I was very young (13-19), I was told repeatedly and constantly by medical professionals that my symptoms weren’t real, it was all in my head, I had no idea what I was talking about, I was lying to get attention, and “this is what periods are get over it”. Now, in my early forties, despite being diagnosed and having had lap surgery at 19, I’m still questioned by Dr’s and nurses who refuse to believe that I’m telling the truth, my nearly debilitating symptoms are real, that I’ve even had surgery (despite multiple abdomen scars). It’s been a constant, life long struggle of convincing people that this is in fact a real thing and I’m not seeking attention or making it all up. Being told by multiple gynecologist that’s it’s “impossible” to experience these symptoms is mentally exhausting and insulting to my intelligence.
How have you found hope and support in your endometriosis journey?
I’ve experienced very little support from any medical system, apart from the ONE gynecologist who initially diagnosed me. I’ve experienced only small amounts of support from loved ones. I cope and survive on a daily/weekly/monthly basis 100% on sheer will and extreme stubbornness.
What do you think healthcare for endometriosis in Canada should look like?
Endo health care in Canada NEEDS to include: – medical professionals being taught about endo during training. Very few people seem to think it’s a real and valid medical condition – No girl/woman should EVER be dismissed, talk down to, made to feel stupid, or told she’s mentally unstable because she’s seeking medical help – We must prioritize women’s’ health in the this country. Menstruation is natural. Let’s talk about it. Women’s sexual health is natural. Let’s talk about it. – We must empower all women to speak up and don’t take no for an answer. Advocate for your own health. Stand for the health of your daughters, family members.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Being diagnosed with endo is only the very beginning of the life long struggle. Too many women have to literally fight to be heard, to be taken seriously, to receive a basic level of care. The medical system is grossly undereducated concerning most women’s issues and dismissive and uncaring about what it does want to even acknowledge. We need national education from health classes in school, to medical training for professionals.
We need research and data and studies and innovation to learn how to make this disease manageable for the hundreds of thousands of women in this country for suffer from endo. I firmly, 100% believe that if this was a disease that only affected men, huge amounts of money and resources would have been poured into this issue years and years ago. But because it only affects all those pesky women, well tough luck for you gals. Quit your whining and carry on.