What are your endometriosis symptoms like? My symptoms include anxiety, exhaustion, sweating, nerve pain, insomnia, depression, leg pain, extreme pelvic pain, and I had extreme pain during my menstrual period prior to hysterectomy. These symptoms do not include the array of side effect symptoms I have to deal with due to hyper sensitivity to the medications I am needing to take.
What was your journey to diagnosis like? Back when I was 14 I always had the pelvic pain, I was always told that I just had IBS or the suspected Crohn’s disease or ulcerative colitis. Me and my parents had never heard of endometriosis until last year and I am now 33. I always got dismissed about the pain and also was not given any medication to help relieve it. Essentially I was told that nothing can be done and to push through it. I miscarried three times due to infertility and had a lot of issues trying to get pregnant. When I got pregnant with my daughter I was told at 4 months in during pregnancy that there was a shadow in my fallopian tube and surgery was not an option. I almost lost my only daughter due to this surgery. After she was born its just been pain my whole life up until now. My doctor who treats me now was the only person who took my side and believes me when I say “I am in pain” I had two laparoscopies and diagnosed with stage 4 endo. We removed what we could and now trying more treatments to manage the pain which is still ruining my life with no relief.
What has your experience with treatment for endometriosis been? So far I have been on Lupron, Orilissa and Aspen Dienogest. Also two laparoscopies. I am taking Targin to help manage the pain as well. With all of these treatments came extreme side effects due to my hyper sensitivity to medications. My concerns are that not all medications work for every girl and that these treatments can effect everyone differently.
How does endometriosis affect your day-to-day life? Endometriosis has limited and impacted my life fully. I used to be active and confident and now I feel useless and ashamed of my own pain. I can’t be out in public long, pain flare ups appear out of nowhere, I’m exhausted from doing the simplest of tasks and constantly irritable from being in pain. I try to be strong for my daughter and be the mother she needs me to be but her seeing me in this state is the hardest pill to swallow. She knows I’m in pain and knows there is something wrong and I really praise her for being able to understand an support me. I cannot go out and have a good time with friends or have a few drinks as alcohol is a trigger to the pain and I am always the one to leave earlier because of my condition.
How does endometriosis affect your emotional well-being? My mental health has been affected because I feel I am constantly being judged. I feel like I am a burden to my friends, family, and significant other. I am really trying to do my best to keep my head up but sometimes that anxiety rears it’s head up, it happens.
How has endometriosis shaped turning points in your life up until now and looking toward the future? Right now I am doing online courses to be a Licensed Practical Nurse. When I am done school I wish to work in women’s health or a pain clinic to help put my skills into helping women with issues such as mine. This condition makes you realize how much endometriosis has a blind eye turned to it and that there needs to be more hands working in this field of work. Women’s health is not a priority in my opinion.
How have you found hope and support in your endometriosis journey? I have found support on people who have the condition, my doctor, my boyfriend, family and support groups for endometriosis. My cousins wife has the condition just as bad as I do so she really helped me through a lot of it and my boyfriend also being my complete support pillar along this road. I’d be nothing without help. Finding support is crucial to keeping your sanity.
What do you think healthcare for endometriosis in Canada should look like? More research is needed, more doctors who are not men, more understanding is needed, less judging when you go to the hospital, the health care system is flawed when it comes to care. Being dismissed by doctors shouldn’t be as common as it is. Realistically I know there are many other people with health problems but women’s health where I live is on the bottom shelf of the health care system. Trying to get help from the government is even harder as disability does not consider endometriosis to be a disability.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Just to be strong! Ask any questions you have to your doctor. Know the symptoms and learn on your own, there are many things you can self learn about because sometimes doctors are not going to be that for you. Be prepared to jump through hoops to prove your pain is real with it be through health care or government. Find support for yourself and remember its your health and sometimes you have to be your own advocate.