Source: nelsonstar.com<\/p>\n\n\n\n
Nelson\u2019s Emma Weiland has suffered the severe pain of endometriosis \nsince she was 12. But it took until she was 18 to get a diagnosis, \ndespite many visits to many doctors and emergency rooms.<\/p>\n\n\n\n
Lack of diagnosis, misdiagnosis, not being taken seriously, multiple \nsurgeries \u2014 these are common experiences of women with the disease.<\/p>\n\n\n\n
All through high school this athletic and academically gifted young woman suffered monthly debilitating pain.<\/p>\n\n\n\n
\u201cAt every dance competition, every soccer competition, finals, it was\n always there, all that pain,\u201d she says. \u201cI continued to accept it.<\/p>\n\n\n\n
\u201cI went to dozens of hospital visits before I was taken seriously, \nbecause ultrasounds and other tests came back with nothing abnormal. \nThey finally did a CT scan. In June of last year I went in for emergency\n surgery because they thought I had ovarian torsion.\u201d<\/p>\n\n\n\n
This turned out not to be the case, but during the surgery they found\n she had endometriosis. \u201cWe had never heard the word before,\u201d she says. \n\u201cWe had never had any information about it.\u201d<\/p>\n\n\n\n
That surgery supplied a diagnosis but not a cure. There is no cure.<\/p>\n\n\n\n
One in 10<\/strong><\/p>\n\n\n\n Endometriosis affects one in 10 women, according to the U.S. \nDepartment of Health. That\u2019s a shocking number for a disease most people\n have never heard of.<\/p>\n\n\n\n Tissue similar to the lining of the uterus grows in other parts of \nthe body, most commonly in the pelvic area, causing pain, infertility \nand organ dysfunction. Its cause is unknown and research has been \nlimited.<\/p>\n\n\n\n Endometriosis was found on Emma\u2019s bowels, Fallopian tubes, appendix, bladder, uterus, and cul-de-sac.<\/p>\n\n\n\n During recovery over the summer she enrolled in business courses at \nthe University of Victoria, but things did not go well there.<\/p>\n\n\n\n \u201cI came back for Thanksgiving and Mom took one look at me and said \nsomething is wrong. I had lost about 15 pounds and I was falling apart \nphysically. I was lucky if I could make it from my room in the basement \nup to the kitchen. Some days I would go the whole day without eating \nbecause I could not get up.\u201d<\/p>\n\n\n\n She was spending much of her time in a wheelchair.<\/p>\n\n\n\n Weiland withdrew from school and put herself on a waiting list for \nexcision surgery at B.C. Women\u2019s Hospital. Excision surgery (more \nadvanced than the surgery she received in the summer) is considered the \ngold standard treatment (but necessarily not a cure) for endometriosis. \nWeiland says there are fewer than five doctors in Canada who perform it.<\/p>\n\n\n\n \u201cI was told I would have to wait up to a year. At this point I still have not received an initial call about an appointment.\u201d<\/p>\n\n\n\n \u2018Doctors who don\u2019t believe you\u2019<\/strong><\/p>\n\n\n\n Frustrated by the wait time, her family took her to a specialist, Dr.\n Ken Sinervo in Atlanta, who performed the surgery in January with a \nmonth\u2019s notice.<\/p>\n\n\n\n Without excision surgery, sufferers are traditionally given drugs, \nhormones, ablation therapy, or a hysterectomy. Those are considered \npalliative management.<\/p>\n\n\n\n \u201cIf we had followed what was recommended as a treatment plan she would still be very sick,\u201d says Emma\u2019s mother, Deborah Weiland.<\/p>\n\n\n\n Emma says it would be worse than that.<\/p>\n\n\n\n \u201cI would not be here today,\u201d she says. \u201cI would have committed suicide. This disease not only affects you physically but when you are in the hospital and talking to these doctors who don\u2019t believe you and don\u2019t recognize your illness or know how to treat it, it becomes so exhausting that you cannot imagine living it any more, it is not worth it. So without my parents and especially my mother advocating for me and travelling and finding someone to do proper surgery, I would not be here.\u201d<\/p>\n\n\n\n Mental health effects<\/strong><\/p>\n\n\n\n Deborah, who has done thorough research on endometriosis while her \ndaughter has been coping with it, says the disease doesn\u2019t just affect \nthe body.<\/p>\n\n\n\n \u201cIt affects your hormones, which affects your mental state. So many women are battling mental illness created by this disease.\u201d<\/p>\n\n\n\n Emma says she\u2019s feeling well now, six months after the excision \nsurgery. The surgeon told her the recurrence rate is 10 per cent.<\/p>\n\n\n\n \u201cAs far as I am concerned, I have a brand new life. I can\u2019t do a work\n shift of eight hours but can work up to four hours. I still definitely \nstill have surgical pains and cycle pains, but it is not even comparable\n <\/p>\n\n\n\n Every day is better. <\/p>\n\n\n\n \u201cI have to pace myself right now. My new body is trying to catch up \nwith my personality because I do need to take breaks. I am at about 50 \nper cent of what I would usually be able to to do. But I was at two per \ncent before my surgery.\u201d<\/p>\n\n\n\n Not taken seriously<\/strong><\/p>\n\n\n\n Emma plans to devote herself full time, in collaboration with her \nmother, to form and run the Endometriosis Organization of Canada.<\/p>\n\n\n\n Their first project is Demystifying Endometriosis at the Capitol \nTheatre on Saturday, an event that will include a screening of the \ndocumentary Endo What? <\/em>and a discussion with Emma about her experience.<\/p>\n\n\n\n Emma says the message of the video aligns with her own opinion: that \nmisogyny plays a big part in the lack of research, scarce resources and \nscant medical knowledge related to endometriosis. It\u2019s a women\u2019s \ndisease, so it has not been taken seriously, she says.<\/p>\n\n\n\n There are already a few support organizations in Canada, Emma says, \nbut their new group will take support further by focusing on education \nand advocacy.<\/p>\n\n\n\n \u201cWe want to bring advocacy and education into schools and colleges so people can become their own advocates.\u201d<\/p>\n\n\n\n \u2018A very lucky person\u2019<\/strong><\/p>\n\n\n\n Emma wants to do this because she\u2019s privileged to have been able to travel for her surgery.<\/p>\n\n\n\n \u201cMost women spend all their money on painkillers and appointments. So\n I am very lucky to be only 19 and to have had excision surgery and to \nbe able to advocate for myself and others. That is only a dream for so \nmany women I have met.<\/p>\n\n\n\n \u201cSo many women reach out, but in a week\u2019s time they are in a flare or\n in the hospital or getting another surgery. It is heartbreaking to \nwatch. It is too debilitating to be human. You lose your humanity. You \nlose who you are.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" Source: nelsonstar.com Nelson\u2019s Emma Weiland has suffered the severe pain of endometriosis since she was 12. But it took until […]<\/p>\n","protected":false},"author":1,"featured_media":215,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[148,391,389,390,392,393],"class_list":["post-214","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-uncategorized","tag-dangerous","tag-diagnosis","tag-endometriosis","tag-heard","tag-misdiagnosis","tag-surgeries"],"yoast_head":"\n