What are your endometriosis symptoms like? Lower right quadrant pain, feels like burning, stabbing, deep aching, like getting punch
ed in the stomach. The pain is worse when I go to the bathroom for a bowel movement or to pee, and hurts both before and after. If my bladder go too full, I would feel pain in my lower left side before feeling my bladder get full. I also feel a twisting and aching sensation in my uterus multiple time throughout the day. During my period these symptoms are amplified to the point some days I can hardly move. I clot a lot with my period and they last up to 12 days and are very heavy. The fatigue that comes with this is enormous. I cannot get through a day without napping.
What was your journey to diagnosis like? When my pain first started, I went to a walk-in doctor at my university. He did not sent me for bloodwork or imaging. He sent me for a test for an STI. His judgement of me trying to reach out for help only shamed me into thinking no one would listen, because I knew I didn’t have an STI. Later I sought a second opinion which ultimately led to me getting diagnosed with a tennis ball sized ovarian cyst, which could have led to ovarian torsion and loss of my ovary. I continued to have pain after this surgery and decided to pursue getting a diagnostic laparoscopy, as I had done some research on endometriosis and knew this to be the only means of getting a diagnosis. I had this surgery with a general gynaecologist and after surgery was told “good news, you don’t have endo!” I was devastated at this point because this was around year five of me trying to get treatment for this chronic pelvic pain I had been having. After this surgery I was put on continuous birth control, which helped for a few years to control my pain and symptoms. Then, the pain came back in full force. I started on many pain meds, including anti-inflammatories, and ended up in emergency rooms twice because of how much they hurt my stomach and gastro-intestinal tract. I ended up starting in other pain meds, like Gabapentin, Tramadol etc. which helped get me through my days. My family doctor referred me to and endometriosis excision specialist of my choice, because I did not want to risk waiting for a surgery with a general gyne that could give me the same answer as before. I would still get the periodic pain crisis and ended up in emergency about four more times before my excision surgery. I got my surgery, and they found endo and suspected adenomyosis.
What has your experience with treatment for endometriosis been? I was referred to a chronic pain clinic, but the wait lists were so long that I wasn’t given an admission date until after I had had my surgery. Due to this, my treatment meant mostly pain killers. When anti inflammatories didn’t work, I ended up in neuropathic pain meds like Gabapentin and Nortriptyline. My GP was able to do one time consults with a pain specialist which led me to those meds and also Tramadol. Most days, these meds helped keep the pain at a manageable level. Once I had my first consult before surgery with my endo specialist, I was started on a hormone medication called Visanne. The Visanne gave me around six days a month pain free before I had surgery a few days ago. Ultimately I was able to get the highest standard of treatment for endo, excision surgery. I had endo removed along my right side abdominal wall and also had adhesions removed, which were likely caused by the endo. Right now I’m having the acute pain associated with surgery, but I already feel an absence of some of the old familiar pain I had before surgery.
How does endometriosis affect your day-to-day life? Many times I would be unable to perform household tasks, like cooking dinner, or even bending over to fold laundry. I would often get more pain after going for a walk or other physical activity. Sometimes the pain was too bad to go out to be social with friends. Unfortunately endometriosis also can impact the ability to be intimate with your partner, and I was one of those impacted badly by this.
How does endometriosis affect your emotional well-being? At times I have felt hopeless, or like giving up. When wait times to see specialists were so long, it made me feel even worse, like no one could or would help me. I would often get depressed and deeply sad by my situation and with the pain that was incessant. I began to feel anxious as well as time went on for when the next flare up would happen.
How has endometriosis shaped turning points in your life up until now and looking toward the future? My husband and I have decided to postpone having a family until we knew how effective the endometriosis excision surgery would be. I knew I would not be the mother I wanted to be with the constant pain. I also ended up choosing to be in a more sedentary job, to avoid missing work.
How have you found hope and support in your endometriosis journey? My husband had been so supportive, and once I go in with the endo specialists, I finally felt hope again. During my surgery and hospital stay, I had such a compassionate treatment and nursing team. This really helped decrease my anxieties of being in hospital. My work has also been incredibly understanding and encouraging me to get the help I need. I also joined support groups on Facebook for people with endo – The Endometriosis Network Canada and Endo Alberta. I was able to bounce ideas off of others, ask for advice, their experiences etc. for how to deal with the myriad of issues that this kind of chronic pain brings.
What do you think healthcare for endometriosis in Canada should look like? Girls should be educated in grade school on what endo is. There should be no room for discrimination onto women for trying to seek help for gynaecological related pain. There should be more education to physicians in medical schools for what endo is, and make it a common knowledge health issue. If endo becomes more common knowledge, hopefully there would be more specialists available to decrease wait times to see them (some specialists have up to three years wait time). I think there should be more specialists and decreased wait times, maybe 3-4 months wait.
What do you think it is important for people to know about the experience of having endometriosis in Canada? It is painful, both physically and emotionally. There a many moments you feels hopeless, either due to lack of getting proper specialist treatment, or because you have been gaslit by the medical commission that the pain is in your head, and nothing is wrong, or that the pain is your fault.