What are your endometriosis symptoms like? A sharp stabbing pain all around my abdomen. During periods, ovulation and certain movements. Pain during bowel movements. Painkillers and antiinflammatories do not make a difference.
What was your journey to diagnosis like? I started experiencing intense symptoms 1 year ago. When to numerous gynaecologists and family doctors who brushed off my debilitating pain and told to take birth control despite there being a suspected endometrioma on my ultrasound. I started taking it but I knew that there was more to this disease after I did research on it ALL BY MYSELF. In particular Nancy’s Nook really helped and the Endometriosis Network of Canada. The birth control helped with the pain, but I am currently waiting for a consultation with an endometriosis specialist which I found through Nancy’s Nook. We call them Nook doctors. The appointment was a 5 month waiting time. Then after that I will push for surgery. The wait time for surgery is at least 1 year, who knows how it will go. I am going to medical school next year and now I feel lost. If the wait times were shorter I would have answers quicker and a greater chance of being pain free after surgery.
What was your experience with treatment for endometriosis been? Birth control is my go-to right now, and pain killlers. Nothing else really makes a difference. Of course this all occurs before you have surgery as surgery is the only way to get rid of the disease from its origin on your tissues. Everything is else is a band-aid. Please note that EXCISION SURGERY is what you want from an EXPERT, not ablation.
How does endometriosis affect your day-to-day life? Bedridden; can’t work, can’t go to school, can’t study. The only thing you can think about is the pain because it is so intense. Made me depressed and suicidal to say the least.
How does endometriosis affect your emotional well-being? Depression, suicidal thoughts. Losing hope of things getting better. 1 in 10 women have this disease but no one knows anything about it! It angers me to say the least.
How has endometriosis shaped turning points in your life up until now and looking toward the future? I am going to medical school next year, I can only hope that things go well and I do not flare up. Otherwise, I will feel lost and lose hope. I have always been capable of so much from working out to to being a straight A student, and participating in numerous sports teams. This illness has changed everything that was personal to me and has stripped my identity to the point where fertility is the least of my worries, I just want my life back. I would never wish this on anyone.
How have you found hope and support in your endometriosis journey? My mom is my biggest rock, she has the hope that I lack. I feel bad that she has to deal with this. Taking care of me is not something she should be doing. But that what it has come to. I am hopeless. Nancy’s Nook has helped me understand this disease to the point where I have more knowledge of it than all the non-specialists I have seen INCLUDING GYNAECOLOGISTS.
What do you think healthcare for endometriosis in Canada should look like? See an endometrioris specialist within a month and get surgery within 2 months. More awareness of a disease affecting 1 in 10 women. More opportunities for medical training for endo and surgery. More funds allocated to endo research and how to better treat and even cure the disease. MORE GENERAL AWARENESS. This disease is as evident as diabetes, asthma and hypertension, yet no one cares.
What do you think it is important for people to know about the experience of having endometriosis in Canada? We have options for care, BUT DO NOT LET DOCTORS TELL YOU YOU ARE CRAZY. Fight for an endo specialist and go from there. Do not take meds without knowing their effects.