What are your endometriosis symptoms like? 

Like those awful cramps you get right before a bout of really bad diarrhea, only there is no relief for days. The kind that make you break out in a sweat and cry out in pain, and desperate to find the nearest bathroom to relieve the pain. That’s what endo feels like to me, all consuming, desperate pain.

What was your journey to diagnosis like? 

I suffered from painful periods my entire life, and when I was 27 I began to cry during a Pap smear and begged the student doctor to please help me. I was missing work and unable to function 2-3 days of the month because of the pain. Before that I had been told to take birth control, suck it up, pain is normal, use different positions when having sex.

What has your experience with treatment for endometriosis been? 

It’s an endless barrage of hormones and surgery. I was on birth control most of my young life from 14-27 until I wanted to get pregnant. I had my first surgery at 27, another at 29, another at 31, and will have another at 35/36. Hopefully my last. Excision surgery provided the most relief, ablation surgery made everything significantly worse. Hormones can help, but have to be the right ones for the person. I find hormones always negatively effect my mental health. Progesterone only has been the best choice for me. I was also given Danazol by a poorly educated doctor and have permanent side effects including liver damage, it isn’t really used anymore.

How does endometriosis affect your day-to-day life? 

It is difficult to attend work, school, or social functions when you cannot walk due to debilitating pain. It is difficult to date. I am infertile and cannot get pregnant. I have left many jobs due to my inability to be consistently well. I have been discriminated against in almost all aspects of my life because of my endometriosis. I am almost always depressed, and have experienced periods of complete isolation, and have had my partner tell me it is as if I’m not even alive or here, because I cannot move off of the couch or function for months at a time sometimes. I used to do daily yoga but got tired of being interrupted 5-6 days of the month and lose all my strength and rebuild it again just to be set back again. I also like swimming and face the same challenges, especially because it is too painful for me to wear tampons. Pain is a life killer.

How does endometriosis affect your emotional well-being? 

As I said in the last answer. I am always depressed. I have terrible mid-night insomnia and wake up almost every night, I have to take medication at bed time to suppress pain or else I will not be able to sleep at all. Leaving or losing careers that I have loved has been more painful to me than I can describe with words. Discrimination has decimated my self worth. People don’t understand how you can be so sick some of the time, and look perfectly fine to them. I can’t even guess at how many hundreds of thousands of dollars I have lost because I lost a well paying job due to discrimination.

I have had to take minimum wage work several times. I went to college to be a health care aide and had to quit when my symptoms became too much after several years. I also believe it has given me Post Traumatic Stress Disorder. I am filled with fear whenever my period begins. I can never be sure how bad it is going to be. The desperation I feel during my periods is devastating. And then when I have had to go to the ER for help I have had many doctors accuse me of drug seeking, lying, or wasting their time. I have learned to manage at home 99% of the time because nothing feels worse than needing and hoping for mercy and compassion and being met with stone cold rejection and discrimination. “You have come in for pain a lot” with two painful diseases listed on my chart, you’d think they would have some compassion.

Is 15 times over 20 years really “a lot”? Out of hundreds of painful periods I have only gone to the ER handful of times, they just don’t understand what we go through and how desperate we have to be to leave the comfort of our homes to plead for medication or relief of some sort. Sometimes I cannot stop vomiting, have diarrhea, and am unable to tolerate oral medication and end up dehydrated and in 11/10 pain before dragging myself in for IV fluids and NSAIDs. That’s how bad going to the ER feels.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

I have lost my jobs and been discriminated against. Sometimes I leave jobs when I am getting sicker before they can fire me or pull me into endless meetings about why I can’t just “make myself well” yes, that was really said to me by a large corporate employer. I cannot have children. I have almost lost my partner to the dark hole that is chronic, severe, debilitating pain. I missed a great deal of high school, and was always treated like I was making it up.

My parents have sometimes acted like it is my fault they don’t have grand children. I am scheduled to have a hysterectomy for adenomyosis and a second round of excision for endometriosis and am hoping things will get better. I want to go to school to become a therapist. Endometriosis is a lonely disease. I have no long term friends. My family is often angry at me for not attending family events. I have mostly given up on friendships and have become a loner outside of my online friends who all have endo also. It is too difficult to maintain relationships when people don’t understand or don’t believe you, or just give up because you are not available in the ways most friends are.

How have you found hope and support in your endometriosis journey? 

All my endo sisters, I have made lifelong friends, and they have been some of my only lights in the dark when no one else can understand what I am going through. Finding an excision surgeon and having surgery. My spouse has been more supportive and understanding than most would be, he is my rock. If not for doctors and modern medicine and surgery I do not believe I would be able to go on living.

What do you think healthcare for endometriosis in Canada should look like? 

Immediate diagnosis and excision surgery, followed by an appropriate after care plan for individual circumstances. I believe delays in diagnosis sterilized me.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

No one seems to care, and employers are free to discriminate against us even though we have a disability. No one cares about women’s troubles. Stigma is a huge issue when talking about endometriosis. It isn’t even a true disease of the reproductive organs, it’s a whole body disease that happens to manifest mainly in the pelvic cavity, and thus is blanketed in stigma because of that, and because flares are most often caused by our pelvic organs doing the things they do. They are linked, but not in the way people think.