What are your endometriosis symptoms like? I experience very painful periods. It feels like someone has stabbed me in my pelvis/abdomen area constantly and it can be hard to alleviate the pain. I also experience a lot of gastrointestinal symptoms as I have endometriosis on my bowels. I don’t often feel well therefore I tend to stay home and don’t have a very active social life. In addition, I am tired all the time, even if I have no issues sleeping.
What was your journey to diagnosis like? I had my first period at the age of 11, and it has been hell since then. I only got diagnosed at the age of 26 through a laparoscopic surgery to remove my appendix. I was constantly told by medical professionals that it was normal to have painful periods and that intensity of the pain was likely just all in my head. When I got diagnosed in October of 2020, I felt like the health care system failed me because I had been trying to get help for years.
What was your experience with treatment for endometriosis been? The health care system in New Brunswick is not the best. The surgeon who diagnosed me has basically dropped off the face of the earth and I cannot get in touch with him because his office is now closed. He was supposed to refer me to a gynaecologist. Now I have to go through a sexual health clinic but it has been difficult so far.
How does endometriosis affect your day-to-day life? My quality of life has been greatly impacted. I am constantly spotting between periods therefore it is difficult to be intimate with my partner. I tend to stay at home as I am usually tired and don’t feel well. I also experience a lot of gastrointestinal symptoms.
How does endometriosis affect your emotional well-being? Endometriosis has significantly impacted my mental health. It has impacted my ability to conceive which has been very difficult for me to deal with. Because I am always tired, I don’t feel motivated to do a lot of things. This illness has also impacted my relationship with my husband. It’s hard to explain the impact and I think people don’t fully understand until they are diagnosed themselves.
How has endometriosis shaped turning points in your life up until now and looking toward the future? When I am on my period, I find it difficult to go to work but so far I have been able to work through that. I have missed days from school/university. In terms of starting a family, I stopped birth control for a full year and was not able to conceive. I then went back on birth control as I could not handle how painful my periods were.
How have you found hope and support in your endometriosis journey? I find support groups on social media make me panic as people often think of worst case scenarios and when someone seeks advice, people often give very negative advice so I try to avoid those groups on social media. Thus far, I have found that my family has been very supportive. My husband is very supportive and will help out any way he can. I don’t feel supported by the health care system at all.
What do you think healthcare for endometriosis in Canada should look like? It’s basically non-existent. Health care professionals in Canada lack the knowledge about endometriosis. So many women are suffering because of that lack of knowledge and it’s not fair. Health care professionals need believe their patients when they say that they are in pain. Even if they don’t fully understand the illness, they have got to believe their patients.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It takes a long time to receive a diagnosis, and that it’s so much more than just a painful period. It’s truly debilitating in so many ways. Endometriosis is truly an invisible illness and just because you can’t see it, doesn’t mean that it’s not there.