What are your endometriosis symptoms like?\u00a0<\/b><\/p>\n
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 \u00ab\u00a0pulling down\u00a0\u00bb 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 \u00ab\u00a0period flu\u00a0\u00bb.<\/p>\n
What was your journey to diagnosis like?<\/b>\u00a0<\/span><\/p>\n 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 \u00ab\u00a0get out of school\u00a0\u00bb. 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, \u00ab\u00a0while I’m in there I’ll look for endo, and hit 2 birds with 1 stone.\u00a0\u00bb 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.<\/p>\n What has your experience with treatment for endometriosis been?<\/b>\u00a0<\/span><\/p>\n 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.<\/p>\n How does endometriosis affect your day-to-day life?<\/b>\u00a0<\/span><\/p>\n 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.<\/p>\n How does endometriosis affect your emotional well-being?<\/b>\u00a0<\/span><\/p>\n 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.<\/p>\n How has endometriosis shaped turning points in your life up until now and looking toward the future?<\/b>\u00a0<\/span><\/p>\n 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.<\/p>\n How have you found hope and support in your endometriosis journey?<\/b>\u00a0<\/span><\/p>\n 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.<\/p>\n What do you think healthcare for endometriosis in Canada should look like?<\/b>\u00a0<\/span><\/p>\n 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 \u00ab\u00a0suck it up\u00a0\u00bb. So when a woman suffers pain enough to complain about it and bring it to a physicians attention, she needs to be taken SERIOUSLY!<\/p>\n What do you think it is important for people to know about the experience of having endometriosis in Canada?<\/b>\u00a0<\/span><\/p>\n 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).<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" 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.<\/p>\n","protected":false},"author":4,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[44],"tags":[46,17],"class_list":["post-1993","post","type-post","status-publish","format-standard","hentry","category-temoignages","tag-anglais","tag-colombie-britannique"],"yoast_head":"\n