What are your endometriosis symptoms like? Abdominal pain, nausea extreme fatigue & constipation.
What was your journey to diagnosis like? Since my menstruation started I have had debilitating periods, nausea, fatigue then painful intercourse, ovarian cyst etc. My family doc referred me to a gynecologist. The first two gynecologists dismissed possibility of endo saying all these symptoms are normal. Third gynecologist says it was most likely endo & to effectively confirm his suspicion I have to have laparoscopic surgery. i’ve been on birth control pills for 4 years to control the pain. Unfortunately, I know that estrogen feeds the endo but controls the pain. It’s a band-aid solution while waiting for surgery.
What has your experience with treatment for endometriosis been? The only treatment I will accept is excision surgery with a surgical team as my endo may have spread to other areas including diaphragm. I want to avoid multiple surgeries and address the problem in my first & hopefully only surgery. I changed me diet to a macrobiotic diet as well
How does endometriosis affect your day-to-day life? Some days the pain is so bad I am in a fetal position unable to function at all. Exercise usually helps when I am not in pain but when the pain hits it’s bad & debilitating.
How does endometriosis affect your emotional well-being? Anyone who doesn’t feel well feels sad as it affects your moods when you are often unwell. Also when you go to emerg due to the excruciating pain & they send you home it is so discouraging that it causes some depression.
How have you found hope and support in your endometriosis journey? Nancy’s Nook support group is extremely educational & very supportive professionals respond to their clientele. It has been extremely helpful. Endometriosis Canada has been informative as well but lots more needs to be done there.
What do you think healthcare for endometriosis in Canada should look like? It is bad in Canada as there are not enough gynecologists specialized in endometriosis excision surgery. Family doctors should immediately refer these women to endometriosis/excision specialists at the onset of symptoms to rule out endometriosis ASAP or to address the problem earlier than later. The system is fundamentally flawed in Canada. Much more research is needed on the cause & prevention & treatment options and also on a less invasive method to diagnose.
What do you think it is important for people to know about the experience of having endometriosis in Canada? You need to fight & be your own champion if you have those symptoms as you will be bounced around from doctor to doctor because far too many are not properly trained on identifying endometriosis & how to effectively treat it.