What are your endometriosis symptoms like? I went from being a very avid hiker, naturalist , league bowler and PSW working in long term care to someone who barely left my house. I spent days unable to get out of bed. I was a first time grandmother when I first became debilitated from this disease. What hurt the most was not being able to interact with my grandson as I wanted to. I felt like a complete failure to my family and as a mother and grandmother. 

What was your journey to diagnosis like? It took about 7 years to get a diagnosis. When I first went to my GP complaining about my period fatigue and stomach troubles he told me “ that just happens sometimes “. He blamed my symptoms on stress. After a few years of these symptoms increasing I became anaemic and my family doctor referred me to a haematologist who said all my symptoms were from the anaemia and I was put on iron supplements. I was also referred to a gastroenterologist who performed a gastroscopy and colonoscopy that turned up nothing. A few more years went by and my gastrointestinal symptoms became unbearable. I was constantly fatigued, develops allergies and food sensitivities. My periods started becoming erratic and my legs would wake me up from sleep with pain. I felt like I constantly had pressure in my pelvis and would bloat enough that I looked 8 months pregnant. I would wake at night 1-4 times drenched in sweat. I was told I was likely in early peri-menopause , despite my lab work suggesting otherwise. The pain got so bad I had over 50 emergency room visits in 2 years. On those various visits I was more often than not treated like a drug seeker even though I never once asked for pain medication and had no history of drug use. Sometimes I was treated like a mental health patient and had doctors suggest my pain was psychological. Every imaging report came back “ normal” . Every blood panel came back “ within normal range”, including my ferritin which was at 6. I became desperate for answers and tried supplements for everything I could think of, parasite cleanses, Candida cleanses, every vitamin and mineral I could think of. I likely did more damage to myself in this effort as my intestinal lining started coming out in large clumps. I was even sent to a tropical disease specialist that ran multiple tests, that again, all came back negative. I also underwent 2 more gastroscopies, a capsule endoscopy and another colonoscopy in this time, as well as a scope into my bladder. My gastroenterologists suggested I had IBS and perhaps some kind of “ nerve-pain syndrome” , but refused a referral to a neurologist. My breasts were also full of cysts, and I needed a lumpectomy for a large fibroadenoma that developed. At some point my family doctor decided my symptoms must be the result of some kind of mental illness. He refused to run any more tests or give me any more referrals. I never felt so sick in my life and so alone. I was in pain every single day, with nowhere to turn. I was pretty much bed ridden at this point, and weighed 103 pounds. My husband ran into our family GP at the local hardware store and kind of cornered him in the parking lot and begged him to help me. He finally referred me to a gynaecologist, but was not very pleased about it. I was hopeful that this referral would lead to answers, and it did. The gynaecologist suggested perhaps I had endometriosis, however the only option she offered was an IUD. That was the worst 7 months of my life. After having an IUD inserted I bled continuously for 7 months and the pain was unbearable. No one would remove it, and they kept telling me to give it more time to settle. I could barely walk upright. I was in and out of the emergency department trying to get someone to listen to me. Finally the IUD was expelled on its own. I begged the gynaecologist to consider a laparoscopic investigation but she refused. I asked about a hysterectomy and she also refused to consider this option as well. I had to go back to my GP and beg for a referral to a different gynaecologist. My GP’s frustration with me at this point was made quite clear. On a few occasions he actually rolled his eyes when seeing me at his office again. I am very fortunate that he listened this time though because it led me to a gynaecologist with more experience with endometriosis and he sent me to a specialised endometriosis clinic. The doctor performed a pelvic ultrasound and saw the endometriosis right away, as well as adenomyosis and several endometrial polyps. We decided on a treatment plan and for the first time in years I did not feel I had to beg, argue or push for treatment. I can not express how it felt to finally be listened to, but I cried half the way home- not from pain and frustration, but from the validation and hope I felt. I am now 2 weeks post-op where I had endometriosis excision and a hysterectomy. I am feeling better day by day. I’m not sure I will ever get over how I was treated by many doctors on this journey, but I like to think that the care I did receive finally makes it all worthwhile. However my heart breaks for the thousands of others still fighting to get the proper treatment with the proper specialists. 

What has your experience with treatment for endometriosis been? The most difficult part of endometriosis is getting to an endometriosis specialist. That journey took years of frustration and pain, and left deep emotion scars. Once I did get to an endometriosis specialist however, it was a world of difference! Just to be listened to, and have a knowledgeable doctor guiding my care allowed me to start building back the trust I had lost in our medical care system. I had excision of endometriosis and a hysterectomy, and the care I received throughout the entire procedure was wonderful. If I had one wish it would be that endometriosis was more widely understood by family practitioners, gastroenterologists and urologists. If it had been, I would not have had to go through so many unnecessary procedures, or have been made to feel like I was “ crazy”. 

How does endometriosis affect your day-to-day life? Endometriosis took away everything I enjoyed in life. I could no longer work, or engage in the activities I enjoyed. I was always in pain, or too fatigued . Many of my friends did not understand, and very few came to visit after awhile. Sick people are not fun people! More often than not I had to cancel plans. I missed weddings, funerals, births and other family events. It was a very lonley journey, that put the bulk of responsibility onto my husband and children. I will never get those years back. Support groups online are likely what saved my life, as at one point I was so depressed I just wanted to die. 

How does endometriosis affect your emotional well-being? Emotionally, this disease almost took everything from me. When I had no diagnosis I was scared, felt alone and had no clue what was happening to me. Having doctors repeatedly telling me “ everything looked good”, I think, drove me insane. I constantly questioned myself. I felt like a complete failure. I developed anxiety attacks every time I had a doctor’s appointment. My sex life became non-existent as it was painful. It definitely affected my marriage. 

How has endometriosis shaped turning points in your life up until now and looking toward the future? I have learned to rejoice in the small blessings in life, and to not take my health for granted. I can’t wait to get back to life and nurture a relationship with my grandson. However, I have made a point of educating my own daughters to know their bodies and fight for care. 

How have you found hope and support in your endometriosis journey? The best support I received was from my online endometriosis support groups. The multiple stories are heartbreaking, but they helped me not feel so alone. They also pointed me towards places where I could educate myself better. I could never have survived this journey without these groups of wonderful people. 

What do you think healthcare for endometriosis in Canada should look like? I think we need more education for front line care givers such as family practitioners and radiologists. They are often the first point of contact and more knowledge of endometriosis could save many patients from years of misery and pain. I think patients should be given the option of surgical intervention by a trained endometriosis specialist. Pushing hormonal pills and IUDs does not stop the spread of disease and often can cause more pain and side effects. We should not have to fight our own doctors to get proper care and treatment. 

What do you think it is important for people to know about the experience of having endometriosis in Canada? I think it is important for endometriosis patients to know that they are not the problem, the lack of education regarding this disease is the problem.