What are your endometriosis symptoms like?
Debilitating lower left quadrant pain a week before menstruation, which lasts through my cycle and up to a week after, and also during ovulation. The pain is so intense that often times I’m unable to walk. Rectal pain/pressure and a “pulling down” sensation can also make sitting difficult. Emptying bladder/bowels and sexual intercourse can initiate a flare up at any time unrelated to my menstrual cycle. Fatigue, migraines, back/hip pain and worsening allergy symptoms accompanies my flare ups – I call it my “period flu”.
What was your journey to diagnosis like?
My diagnosis took 17 years. As a teenager, I was in and out of emergency rooms from the pain. Imaging and blood tests always came back normal (except an ANA -Antinuclear Antibody test, but the specialist didn’t feel the need to investigate). I saw numerous different GPS and Gynecologist searching for answers. One Dr actually accused me of faking my pain to “get out of school”. I gave birth via C-section at age 22, and by age 30 I decided to ask for sterilization. The Gynecologist I spoke to was new, and upon hearing my chronic symptoms, was convinced that I had Endometriosis. He was going to prescribe me hormones without knowing for certain, just based off of my symptoms. I asked for a bilateral salpingectomy, so he said, “while I’m in there I’ll look for endo, and hit 2 birds with 1 stone.” I had chocolate cysts, endo lesions throughout my entire pelvic cavity and organs, and extensive adhesions that had bound several organs together and then adhered to my pelvic wall. If I hadn’t had asked for surgery, I would never have known for certain what was wrong with me.
What has your experience with treatment for endometriosis been?
Surgery to remove the adhesions and cysts, and cauterization of lesions left me pain free for about 6 months. Slowly the symptoms came back and now – 3 years later – I am back to where I started, as of I never even had surgery. I don’t take pills for anything – no pain meds, not even Tylenol/Advil, no hormones. I use cannabis as needed for pain. I no longer work so I’m able to take my symptoms one day at a time. My heating pad is my best tool.
How does endometriosis affect your day-to-day life?
I can’t work because my symptoms are so frequent and severe that I’m not a reliable employee. My sex life is almost non-existent because I anticipate pain. I have had to keep my elementary aged child home from school during bad flare ups (when I can’t walk) to help me. I don’t have many friends because I’m unable to maintain those relationships. I don’t make plans because I only get approximately 1 week of relative peace per month, but sometimes my symptoms are all month long. On days I feel good, and try to exercise or do something physical, quite often I end up paying for it later with a bad flare up. My extended family doesn’t understand, and I’m sure some don’t believe the extent of my symptoms/illness. I’ve become very isolated, and it has weighed heavily on my mental health.
How does endometriosis affect your emotional well-being?
I have anxiety because I’m always anticipating pain. I’m afraid to be in public alone when a flare up hits. Sometimes something as simple as urinating gives me anxiety because pain usually follows. I’ve suffered from depression on and off because of my limitations. Sometimes I feel like a burden to my husband. I get tired of disappointing everyone around me when I have to cancel plans or refuse to make them in the first place. I barely leave my house anymore.
How has endometriosis shaped turning points in your life up until now and looking toward the future?
I’ve never had life plans, I’ve always gone with the flow of life. I had 1 beautiful, healthy child when I was 22 years old. When I had surgery at 30, my fallopian tubes were full of endo lesions and the Dr felt that I may not have been able to have any more children. I was already done having children at that point in my life, but I’m so grateful I had my child when I did.
How have you found hope and support in your endometriosis journey?
I have had next to no support from anyone, and I think it’s due to the fact that it’s not a well-known disease. My husband is the only support that I have, and he takes it all in stride. I couldn’t have asked for a better partner.
What do you think healthcare for endometriosis in Canada should look like?
Healthcare SHOULD be about Dr’s being more willing to investigate symptoms rather than just medicating – aka putting a band-aid on the issue. I had my pain dismissed for almost TWO DECADES. I was made to feel like it was all in my head. Female hysteria should NEVER even be considered by Dr’s in this day and age. Especially because us women already *biologically* deal with more pain than men do, and we’re expected to “suck it up”. So when a woman suffers pain enough to complain about it and bring it to a physicians attention, she needs to be taken SERIOUSLY!
What do you think it is important for people to know about the experience of having endometriosis in Canada?
You have to be your own advocate and fight for your diagnosis. No one else will do it for you, not even (most) Dr’s. There is a total lack of awareness about endometriosis, not enough excision specialists, and virtually no support groups (save for online, which pales in comparison to in-person groups).