What are your endometriosis symptoms like?
When I was younger it was very intense period pain. Not ever month but for me it happened about every 3rd cycle or so. When I had a bad period the start of my cycle would happen very quickly and with great intensity. I remember being 13 at a sleepover the first time it happened and the pain being so intense I couldn’t sleep all night. On my 16th birthday I went for a jog when my period started and I could not walk. The pain hit so quickly and intensely I had diarrhea, cold sweats, and vomiting. I was not sure how I was going to make it home. As I got older it was sharp pains in my groin, low back pain, cramps in between periods, sometimes pain after intercourse. I have also had a ovarian cyst rupture and put me in emergency twice and I have had two surgeries. I also experienced infertility as a result and a six year journey to conceive my daughter. I am now 39 and have been dealing with symptoms for 27 years with little help or advancements in treatment.
What was your journey to diagnosis like?
I had told my health care providers for years about my painful period and expressed how I could not understand how vomiting and cold sweats could be a normal part of periods. I was given birth control at 16 and that was the end of it until I was 28. No one ever mentioned anything called endometriosis or investigated further. The birth control kept most of my symptoms under control until I was 28. At which point me period became shorter and lighter and I began to spot. So I decided to come off the birth control. I was in a committed relationship and we decided we were ready to start trying for a family soon. But after a year of unprotected sex and no baby I started to suspect something was wrong. I went to my family doctor who sent me for an ultrasound and blood work and I was initially diagnosed with PCOS.
I went on trying without help for another year or so when I asked to be referred to an OBGYN. After a 6 month wait I finally got an appointment. I was sent for more blood work and an ultrasound and then tried a few rounds of Clomide with no results. Unfortunately my remote community was in the middle of a baby boom with only 2 OBGYN’s in the town. My lovely doctor got sick and passed away leaving only 1 OB in town left. I was low on the priority list and each month my appointments got canceled and rescheduled for 6 more months. During this time my symptoms had been getting worse with pain and cramping between periods, spotting between periods, and horrible cramps again during my periods. I also ended up in emergency when I woke up one morning in extreme pain that was making my vomit. I was given fluids and pain medicine and sent home. I tried to convey to the doctor how out of the norm this was for me and tried to share my fertility issues and my suspicion that I had an ovarian cyst. But I was dismissed and sent home.
My stomach was badly distended and I was in pain all day. I did not want to return to the hospital but called 811 and they advised me to return to get an ultrasound. I went back to the hospital and another doctor told me to take gas medicine and that I had a stomach bug. A month after the emergency room I finally got back in the the OB and he did an ultrasound on his office. Turns out I had a huge ovarian cyst that he suspected ruptured and with my other symptoms he suspected Endometriosis. He put me on the list for a laparoscopic surgery to confirm. A month later I was in the ER again with the same doctor but this time I was admitted. I had a laparoscopic surgery and it was confirmed that I had stage 4 Endometriosis at 31 years old. I was then referred to the Fertility clinic in Calgary who were amazing. Once I was accepted into the program it was still another 2 years of countless ultrasounds, HSGs, an MRI, and lots of medications. I finally conceived my daughter, a mother before my 35 birthday. It was a 7 year ordeal from the time I suspected something was wrong to the moment I had my daughter. Even when my daughter was born I had an additional surgery right after my C-section to clean up my endometriosis and remove half my right ovary along with a huge cyst. I am now 39 and my endometriosis seems worse then ever.
What has your experience with treatment for endometriosis been?
The only treatments I have ever been offered, have been birth control and surgery. Both have worked for me but not completely. Birth control works for me to prevent the very painful periods and to now limit how many periods I have a year but does not stop the other symptoms I experience. Surgery has helped relieve my symptoms for about 3 years each time and then the symptoms seems to get worse again. I fear for what my limited options will be in the future especially as I get older.
How does endometriosis affect your day-to-day life?
I try not to let it effect my life to greatly. It has at times incapacitated me but luckily very sporadically. It has been embarrassing for me at times when I have had pain at school, work, or after sex and I have to explain why. Most people know very little about Endometriosis and it’s still a bit taboo to talk about it or infertility. The most devastating part of the Endo for me was the infertility and all the emotional, physical, and mental stress that 7 year journey put on me.
How have you found hope and support in your endometriosis journey?
I had very supportive friends and family and once I had a diagnosis things did improve with my health care providers. The fertility clinic and doctors were amazing.
What do you think healthcare for endometriosis in Canada should look like?
I wish there was more research and treatment options available. I wish I had been diagnosed earlier or even made aware of endometriosis as a possible condition. I wish I had been listened to sooner when I knew something was wrong and my pain and symptoms were not so easily dismissed. I wish fertility treatments were covered more financially. It felt like I was being punished in a way for not being able to conceive naturally, even though I have a diagnosed condition.
What do you think it is important for people to know about the experience of having endometriosis in Canada?
Endometriosis is a life long condition that some people struggle with for most of their lives. It can effect every part of a person’s well being and is one of the leading causes of infertility in women. Yet not a lot is known about the disease and there are very few treatment options and no cures. It also effects a large percentage of women and many just suffer in silence.