What are your endometriosis symptoms like?
I have been experiencing symptoms since I was 14 years old, I am now 27. My symptoms range from bloating, extreme abdominal pain, pain with a full bladder, and painful bowel movements to painful sexual intercourse and pain after orgasm. The list also includes headaches and extreme exhaustion and sciatica nerve pain. My symptoms don’t only show when I have my period but at all times during my cycle. My periods are heavy and painful and affect things like my parenting and being able to have a job and when I was younger going to school. Most days not even being able to get out of bed.
What was your journey to diagnosis like?
The first time I heard the term endometriosis I was 17 and my doctor a family physician had just finished my PAP test and he started asking me questions about if I wanted kids, I found this very odd since I was only 17 I asked why and he explained that he believed I had endometriosis and that it would be difficult for me to have kids one day. This was only the beginning of a long journey to my actual diagnosis that would come 10 years later. I left that appointment feeling defeated and he assured me that he was going to refer me to a GYNO that could do further testing and find out if what he was thinking was true. Three months later I became pregnant at age 18 and that halted my diagnostic journey since I was told no testing could be done well pregnant. After I gave birth my doctor put in an IUD and seen a GYNO and was scheduled for exploratory surgery which didn’t happen for a few years. I got my surgery in 2014 and the results were inconclusive and showed a healthy reproductive system, even though I was in consent pain. I later found out my surgery was not done right and they missed a lot. I kept my IUD in for the 5 years I was allowed too and even though it helped it didn’t take the pain away. everything came to a head in 2017 when I finally had the IUD removed and the pain and periods got way worse. I went to a new doctor in late 2018 and asked to be referred to an endo specialist and to be put on a new drug I had researched about called visanne. I got my appointment with the specialist in April 2020 and by November I was on the operating table for my LAP excision surgery this time everything was done right and they found endometriosis under my uterus, on a ligament, and in the pouch of Douglas, I was they finally diagnosed after 14 years of suffering from endo stage 1.
What has your experience with treatment for endometriosis been?
As far as treatment goes I was on visanne for 2 years, which cost $75 a month. I will say after talking to a nurse about the medication she also had endometriosis it was very easy to get my doctor to prescribe the medication. even though I saw a difference in my pain it wasn’t the life-altering drug I thought it was going to be and after seeing my specialist she wanted to combat it with Oralissa I was only on that for a few months as it made me very sick. headaches got worse my mental state suffered and I slept 8 hours a day and was still tired by night time. Another type of treatments I have done is PFT (pelvic floor therapy) I will say out of everything the few months I was doing that was what made the most difference but it isn’t covered and it cost $75-85 a session plus an hour drive and became too expensive for me to continue.
How does endometriosis affect your day-to-day life?
Endometriosis has affected my day-to-day life first starting when I was a teenager and missing school a lot because of pain and not being able to move or get out of bed, to my young adult life where it started affecting my ability to hold jobs or show up to work, I did have a year or two where it wasn’t affecting my day to day as much as before and I was able to finish a post-secondary education but even by the end of the course I found myself calling in and not being able to show up and give a 100%. Now I have made the choice for my health to not work this was a decision made by myself and my health care provider, as the way it affected my life and my mental state was increasing. On a day-to-day basis, it affects my ability to parent and be there for my family if that household chores such as dishes (because standing hurts after so long) or just cleaning because of exhaustion. I found that working out at a gym was too much for my body to handle and have turned more towards restorative yoga and walking (somedays that even causes a flare) As for my social life it is hard to plan anything because I don’t know when the pain will show up and I find myself canceling more times than not I have lost friends in my life because I can’t keep up with them and they feel I don’t put the effort into the relationship. This has not only ruined friendships but all types of relationships in my life. It’s a daily struggle to choose my health and my body’s needs over my family or what I feel I’m responsible to do that day, I usually end my day feeling that I haven’t done enough because of the pain.
How does endometriosis affect your emotional well-being?
Endometriosis has a definite impact on my mental health, how could it not when I have been turned away from treatment or doctors because they think the pain is all in my head. For years I was not taken seriously by health officials and even family and friends often being referred to as crazy or a hypochondriac, there was even a time I was going to self admit myself into a mental institution because I didn’t feel heard or at times couldn’t tell if what I was feeling was all in my head or not. I suffer from anxiety, depression, and borderline personality disorder, I do believe that my journey and how many times I have been dismissed has a great deal to do with the mental illnesses I deal with on a daily basis. It is so important to be validated when you suffer from a chronic illness such as endometriosis. Depression comes with the feeling, I get by the end of the day of not being enough because I can’t stay awake or take care of my family in a way I would like to, or when the fact of being in pain for days on end without relief becomes too much. this illness definitely makes you feel crazy sometimes and that it’s hard to move forward. I have worked so hard on my self-love and acceptance, but I know I have a long way to go yet.
How have you found hope and support in your endometriosis journey?
I am happy to say that after 14 years of dealing with this illness I have a great support system now. My parents have always tried their best to be there for me when the pain was so bad I was on the floor screaming for it to go away. Unfortunately, with relationships it hasn’t always been that way and the pain I have been in has driven people out of my life, but I will say now that I have found a very supportive partner it makes a huge difference in how I deal with the pain. My biggest experience of support was when I got the call from my endo specialist to do a consultation and how heard she made me feel brought tears to my eyes. she was the first person to make me feel like I wasn’t crazy that my pain was real, she said reading my file she cried for me because of the way treatments had been for me in the past. She was also the first person to tell me that my original surgery that was inconclusive was done wrong and that I defiantly needed a second look at. As for negative experiences, I have only had one or two employers understand the extent of my pain and even care, with most saying that due to my health I was not a good fit for their company anymore. I also felt heard or validated when I was doing PFT (pelvic floor therapy) before I was diagnosed she really believed I had endometriosis and helped me overcome some of the pain I was feeling due to that. As far as support groups go, The Endometriosis Network Canada has really been there for me in a positive way this past year and I can not thank them enough for their understanding and support.
What do you think healthcare for endometriosis in Canada should look like?
I believe that the healthcare for endometriosis should be more understanding and knowledgeable about the condition and that treatment options such as medication, physio, massage, and acupuncture as well as surgery or tests that need to be done prior to treatment in some places should be covered and not having to pay out of pocket. I believe if these things change we will see a better quality of life for the people suffering from this condition. As for education, I think that we need a higher standard for people who claim to know about endometriosis but really have a limited understanding and knowledge of treatment. I have been a victim of GYNOs saying they know about it to a high extent and then not treating the condition to the standard it should be. I would like to see endometriosis be a well-known condition and not just shrugged off as something else or misdiagnosed. Doctors need better education about this condition before starting a practice or working in a clinic as this condition affects people born female of all ages. My symptoms started at 13 when I got my first period I was very sick.