What are your endometriosis symptoms like? When I started to have symptoms at the age of 15 that were not allowing me to go to school, I knew something was not right even though many consider period pain to be normal. I would get so much pain in my lower abdomen and back days prior to getting my actual period and when it did come it was so debilitating to the point that I could not get up from bed. Aside from the low back and abdomen pain (sometimes that pain was localized, other time it was all over), I experienced pain in my thighs and legs that felt if I walked I would fall, bloating as if I hadn’t gone to the bathroom in days, heavy bleeding from 5-7 days, fatigue, frequent UTI and many hospital visit because sometimes no over the counter medication would help with the pain.

What was your journey to diagnosis like? When I went to see a gynecologist for the first time at the age of fifteen, all she suggested was that I start on birth control pills to assist with the symptoms I was experiencing. At that time, I was already having cyst so this is what she thought would help with that as well. I continued with all and more symptoms every month. I have an aunt with endometriosis, I would talk to her about my symptoms and just listening to her speak about hers would give me clarity that this had to be that. I started researching on my own and getting information and on my next visit to my doctor I mentioned it to her, however she insisted that I was to young to have endometriosis and at that point about a year after my first visit with her she changed birth control pills, to other forms up until Depovera. As time went on, my visits to the hospital were regular for pain control and reoccurring cysts. I went through countless ultrasounds, scans, everything you can think of…but apparently I was fine. Endometriosis can only be formally diagnosed via a surgery called laparoscopy where keyholes are made and with a camera they look inside. Two years passed until one day I went crying to the doctor that I couldn’t take it anymore. She finally agreed to perform a laparoscopy at the age of 17 and sure enough as I suspected I was formally diagnosed with endometriosis. At my follow up, she educated me on the disease and made me aware of the possibility of not being able to conceive children, it is a chronic condition and options for management. I was feeling a bit better for some months after the surgery as they had cleaned up the endometriosis they had found, but it didn’t take long for all the symptoms to be back in full gear. I really would try to do the best to arrange my days during the time of the month so I didn’t overwork my body. Two years after my first laparoscopy the doctor decided based on my symptoms to go in again and clean out any endo – I don’t think she was confident in what she had done or what else she would find.

What was your experience with treatment for endometriosis been? Endometriosis treatment for me was just birth control and I had a hard time finding something without so many side effects and that worked. I was in continuous pain and to this day get cysts frequently. I think there has to be more treatments available to the many women that suffer this terrible disease.

How does endometriosis affect your day-to-day life? Endometriosis has and still impacts my quality of life. Back as a teenager, I would miss many school days a year because of all the pain I was constant pain and when I finally got a job I would need to do modified work. To this day, it is hard for me to do high impact exercises and have to limit myself on day to day activities. When I am not on my period, I function a little better but reality is that for a women with endo there are no breaks.

How does endometriosis affect your emotional well-being? Endometriosis has affected my mental health especially being diagnosed at a young age and being told that I possibly could not have children. The limitations I had to to put on myself at such a young age and growing up because I couldn’t do what others did was very hard. Sometimes, the pain was so bad that I wouldn’t sleep. I felt less of myself. I was anxious about the unknown and perhaps not finding a man that would accept me with this and the possibility of infertility.  Endo is not curable – I still have endo symptoms but I have learned to manage to the best of my ability and most importantly listening to my body.

How has endometriosis shaped turning points in your life up until now and looking toward the future? I am thirty years old now, it has been fifteen years since I was first diagnosed. My dream career was to become a nurse, but I knew that the way I was feeling back then when it was time to start college, it wouldn’t of been the right thing to do. I choose something easier were I wasn’t required to stand for long periods or do any long placements; I am not pursing what I went to college for. Endo impacted many relationships especially in my younger years, because some people thought what I was going through was normal, which it was not. The lack of understanding from those around me then and now is sometimes hard to deal with, but the difference is that now I am more knowledgeable and I am able to advocate for myself and other women. I got married at 23 years old, so quite young. We both agreed, we would not wait to try to get pregnant because I didn’t know how that it was going to go. I know its a hard topic because many women aren’t able to have children, but I got pregnant after three months of trying with our first, and three years after with our second. Both were complicated pregnancies, but I am thankful and blessed with them. I think being diagnosed at an early age made such a difference for me and it is so important that women can get diagnosed sooner rather then later.

How have you found hope and support in your endometriosis journey? Many years after my first two laparoscopies with my original gynecologist, I posted on Endometriosis Network Canada regarding a good doctor/endo specialist and was provided with one. When I met her and shared my story I couldn’t believe that for the first time there was actually somebody listening and showing compassion and understanding. She has been my doctor now since 2016 and she is one of the best endo specialist. She provides me with guidance and reassurance no matter what.

What do you think healthcare for endometriosis in Canada should look like? I personally think that it shouldn’t take so long for the healthcare professionals to determine if a women has endometriosis. Doctors should be able to pin point the symptoms and formally diagnose sooner than later. Education is key for professionals and for all the women as well.