Endometriosis awareness brings end to suffering in silence

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      Erin Ross Coward can’t count the number of times she’s ended up in hospital with pain so extreme she’s had to have intravenous injections of morphine. The Vancouver resident has a case of endometriosis so severe that doctors told her not to bother going to university: they figured she wouldn’t be able to keep up because of the condition’s debilitating effects.

      Coward did complete her bachelor of arts degree, but she admits it wasn’t easy.

      “I’m in and out of hospital,” Coward says in a phone interview. “There are days when I don’t want to get out of bed or can’t really function. I can’t do the same things that most 26-year-olds can do: I can’t go out and pull an all-nighter.

      “It’s like having the worst period you’ve ever had every day of your life,” she adds. “I’ve had situations where I’ve hemorrhaged out in public. It’s so embarrassing: it’s like peeing your pants in public but you’re bleeding through your pants. It’s awful.”

      She remembers being in high school and throwing up when she got her period because the pain was so intense. It took several hospital visits before she was diagnosed with endometriosis, in which tissue similar to the lining of the uterus (the endometrium) grows in abnormal locations throughout the pelvic cavity, such as the ovaries, the fallopian tubes, and even the bladder and bowel.

      During a regular menstrual cycle, the endometrium builds up and is shed if a woman doesn’t become pregnant. With endometriosis, the misplaced tissue—which is variously referred to as lesions, nodules, cysts, or growths—builds up and breaks down too but can’t be shed, resulting in the formation of scar tissue or internal bleeding.

      The most common symptom of endometriosis is pelvic pain. Others include painful periods, painful sex, lower-back pain, irregular or heavy bleeding, diarrhea or constipation, fatigue, nausea, dizziness, and an inability to become pregnant. According to the World Endometriosis Research Foundation, about 30 to 40 percent of women with endometriosis are infertile.

      There’s no cure for endometriosis, and medical professionals are puzzled as to its cause.

      Vancouver gynecologist Christina Williams, who works out of the UBC Centre for Reproductive Health at Vancouver Hospital and B.C. Women’s Hospital’s reproductive medicine program, says that the condition baffles.

      “It’s a huge problem. The disease is very complex and chronic, and although it’s been studied for a long time, unfortunately research has never been able to provide a clear answer as to why it starts,” Williams says during a phone interview between surgeries. “What is clear is that it causes extraordinary suffering.”¦There is a desperate need to better understand the disease, its progression, and targeted therapies.”

      The only way to diagnose endometriosis is through a laparoscopy, an invasive procedure in which a thin, telescopelike instrument is inserted into the pelvic cavity via a small cut near the navel. A biopsy of the endometrial tissue that’s extracted confirms the diagnosis.

      Williams says women with the condition tend to feel isolated because it’s still considered taboo to discuss problems related to female reproductive health. Plus, women are often told by doctors or peers that painful periods are normal.

      “A lot of women are denied their suffering,” Williams says.

      Catherine Allaire, a gynecologist and clinical associate professor at the UBC Centre for Reproductive Health, agrees that the condition is all too often overlooked.

      “If a teenage girl has to miss school at period time because of debilitating pain, that’s not normal and needs to be addressed,” Allaire says in a phone interview. “There’s a remarkable lack of information about endometriosis. It’s not a cancer, it’s not deadly, there’s not a lot of funding for research, but it has a huge impact on women’s quality of life. Women suffer in silence a lot.”

      Both Williams and Allaire say there’s hope for women with the condition, and that treatment can take many forms.

      Medications, which are usually a first course of action, can be prescribed to control pain, reduce inflammation, or regulate hormonal levels. Sometimes women are given low-dose birth-control pills that suppress menstruation. An intrauterine device can have the same effect.

      Surgery is another approach. Doctors may remove just the affected tissue, one or both ovaries, or the uterus itself. If any lesions exist outside the uterus, though, the disease can recur.

      The success of each treatment varies as much as symptoms do from person to person. Coward, unfortunately, hasn’t had much luck. She’s had four surgeries to remove scar tissue and cysts, has taken all sorts of medicines, and has tried an IUD, which only caused her more pain. Because her endometriosis is present outside of her uterus, a hysterectomy wouldn’t rid her of the disease. Some doctors have suggested she get pregnant to slow its progression.

      “That’s not at all realistic,” she says. The irony is that she’s always wanted children. The more the disease spreads and the more time that passes, the lower her chance of conceiving.

      “I’ve tried everything in the book, and nothing has helped,” says Coward, who has used Chinese medicine, yoga, meditation, and massage to relieve her suffering. “The pain is constant.”

      She says the condition has affected her emotionally.

      “I’ve been pretty depressed at times,” she says. “It’s been a really rocky road. But I’m trying to put that aside and live a normal life.”

      She says a strong support circle helps her cope, as does a health-care team that includes her family doctor, a gynecologist, a psychologist, a spiritual healer, and an acupuncturist.

      The World Endometriosis Research Foundation is supporting various educational campaigns around the world throughout March. Coward herself wants to raise awareness of the condition. To that end, she started a blog at endendobc.blogspot.com, which she writes with her mother, who’s a nurse. Coward says she wants to connect with other women who are dealing with chronic pain, particularly in light of the fact that there’s no Vancouver-based endometriosis support group.

      “I really want other women to know they’re not alone, because I’ve felt that way,” Coward says. “I want to connect with other people, and I want to get people talking about it.”



      Laurie Haughton

      Feb 18, 2011 at 2:06am

      Thank you Thank you Thank you - after reading 100's of newspaper articles over the years about Endometriosis, this is the first one that I can proudly share with my friends and network of "Endo Sisters" as a tool to help people to understand this disease.

      Having a disease that no one can see is difficult, having one that the medical community still does not understand is hell.

      Thank you for giving a realistic overview of this disease, the 176 million women world wide who suffer with it thank you!

      I will be sending it's link to various social media outlets!


      Feb 18, 2011 at 7:21am

      I have been through seven surgeries. My case is very similiar. A hysto would not cure me of this disease as it has spread through most of my reproductive,into my uteralscaral ligment, bladder, I have lost an ovary, it's pretty much everywhere. I fight to live a "normal" life. This is a "cancer" in my eyes, it's a painful reoccuring cancer that just wont give up... it destroys so much of you emotionally, and it takes so much of a womans body. It may not kill you but try to destroy Endo..no one can figure out a way and nothing not haromones or any treatment has worked on mine.


      Feb 18, 2011 at 8:53am

      I've had every drug in the book and multiple surgeries.My last surgery put me in surgical menopause at 30...5 months after,I suffered a relapse and have been unemployed for a year now.Without more research into this disease,eventually alot of women reach the point where surgery is no longer an option, and pain control is all the medical profession can offer.


      Feb 18, 2011 at 3:04pm

      Great article! I was first diagnosed with endo at 22 years old. It robbed me of my twenties. I have had five surgeries, taken lots of different medications and have seen many different specialists searching for a way to deal with the daily pain and suffering. I finally got some relief with my last surgery, an oophorectomy. After seven years of trying, I finally had my son, who I call my miracle baby. He is six years old and after four and a half years of living with little to no pain, my symptoms have come back full force. I'm to a point where I will not have any more surgeries. I find the recovery difficult and honestly they haven't had much success in relieving my pain. I have lost jobs, lost time and lost out on a lot on enjoyment because of this disease but it has also taught me a lot as well. You can't always control what happens in this life but you can always control the way you perceive it and if you allow it to have power over you. Endometriosis is part of my life but it doesn't have an effect on my living.

      Bébhinn NicLiam

      Feb 22, 2011 at 4:41am

      It takes courage to share your story but raising awareness of endo will hopefully lead to less suffering and isolation, so thank you! And congrats to the publishers also, it is so important to get the word out there.
      I've put a link to your story on our Facebook page http://www.facebook.com/pages/Endometriosis-Association-of-Ireland-RegCH... so women here can read it too.


      Feb 24, 2011 at 8:23pm

      I have had two surgeries and am now in remission.

      I don't know if this will work for anyone, but honestly, I recall that the minute I stopped drinking soy or eating soy based items, my cysts stopped growing. Soy is a phytoestrogen and in my eyes, the large quantities I drank for two years caused my cysts. There are many other phytoestrogens out there and I was eating large quantities of those too. No one has confirmed a link between phytoestrogens and cysts, but there is currently research underway. Does anyone have any similar experiences?

      Sarah W

      Jun 25, 2012 at 2:58pm

      This article is amazing! I have yet to read anything that I can actually relate to. I had laparoscopic surgery last year when I had to get my right ovary removed due to a ruptured cyst, that's when they found the endometriosis. It is really hard to deal with, I miss work, family events and just living an active lifestyle due to the ongoing pains and issues. It's hard to talk to friends and family about it because they don't understand the intensity of the pain, so I try to put up a tough front. I'm glad I'm not alone with this and that there are others I can relate to and talk to about this.

      Crystal S

      Jul 5, 2013 at 12:42pm

      I had Never experienced period pain in my life.Period on the Dot every month. But I was diagnosed with endometriosis post my marriage. No family history what so ever.Took zoladex injection,experienced first menopause at 29 yrs.I had a son 2 years later. The best part of my life. I have had six surgeries due to endo. I finally decided to remove my ovaries and uterus as having a surgery was becoming an every year phenomenon.And my uterus,ovaries,rectum,intestines etc were getting stuck and rolled up every year. Life was miserable.Pain was the only constant in my life.Urinating,bowel movements,periods every 15 days and PMS every week.And Bloating and water retention had an a different definition with endo,horrible is not the word.And life coupled with domestic violence ,both emotional and physical, had taken its own toll on my body.My husband forced sex upon me.And with endo and painful sex and joint family drama with mother in law and father in law and sister in laws ,life was traumatic.My son was my only joy and my parents lessons to move on was all i practiced. I went about my daily chores and taking care of my child despite pains even right after all my surgeries.I read some where that emotional(domestic) violence leads to endo.I guess i am part of those statistics.Tramazac and SpasmoProxyvon and Buscopan And laxatives were my daily medications.So i guess i lost my uterus ,and ovaries at a young age of 38 and lost my feminine organs all due to stress.Ladies make sure you opt only for open surgeries and not laproscopy when going for hysterectomy and overectomy AND do not take any HRT,as my surgeon said that it gives rise to microscopic-endo,if any left behind, again, even after removal of ovaries.So I have experienced 2 menopauses in my life which any other woman would experience only once in their life.Women with endo who have gone through this know what i am talking about. It took me 2 years plus to recover from my last and final surgery as while removing the stump of the cervix, my rectum tore apart.Super Ouch !I am absolutely good post the removal and recovery.In bitter litigation now. But extremely happy and at peace despite this new and different agony.My child refuses to be with his father.Daily emotional and physical agony over now.Thank God.No endo and No painful endo like husband either after a decade and plus many years.All painful parts gone.