The Endometriosis Network Canada’s blog serves as a supplemental resource and space for guests to publish posts about endometriosis, including opinion pieces, personal stories, alternative treatments, lifestyle changes, recipes, and more! 

Katie’s Endometriosis Story

Katie’s Endometriosis Story

Hands up if any of this sounds familiar to you: “Just take some antidepressants” “Nothing a little Advil can’t fix” “Every woman goes through this” “There’s nothing wrong with you–you look fine” “It’s just part of being a woman” “Just have a hysterectomy” “Just get pregnant” “It’s all in your head” Actually, it’s in my uterus, it’s on my cul-de-sac, it’s on my uterosacral ligaments, it’s on my appendix, it’s on my bowel stretching across to the right side of my rib cage, as well as in the muscle lining of my uterus… NO, It is most definitely NOT in my head! I have endometriosis. Actually, I have endometriosis and adenomyosis, chronic back pain and pelvic pain ,vulvodynia, pelvic floor dysfunction, and I suffer from depression and anxiety. As long as I can remember I have been living with pain, and it all started back when I was 11 years old. The big day…the day I got my first period. My friends and I called it our “flower,” except mine wasn’t a flower. Mine was a weed. It turned out to be an ugly, twisted weed, the kind with sharp thorns that make you bleed and hurt like hell when you touch them. For most girls, getting their first period is really exciting. Some even have parties thrown for them–a full moon party–no full moon party for me. I was too busy vomiting , with intense cramping and so much pain that I would be bed ridden for the first two days of my period. Every single month I would miss at least 2 days of school. I would... read more
Endometriosis: A Partner’s Perspective

Endometriosis: A Partner’s Perspective

My wife has endometriosis. I have watched it slowly rob her: at first it just took away her assumption that she would feel fine most days like everyone else. Then it started to take away various activities she loved, such as running, hiking and biking. Then it stole her career. And finally, and most cruelly, it took away many moments, hours and days that could have been spent with her kids and me, and instead dictated that she spend them curled up in bed trying to endure one terrible type of pain or another. I know that endometriosis has robbed many other women of these things as well. And endometriosis has robbed me as well, though not nearly so cruelly. It has taken away many of the activities that my wife and I used to do together. It has robbed me of time with her. And at times, it has managed to drive a wedge of one sort or another between us, which we then have to dig up and patch over. But this is not the end of the story, and endo has not won all of the battles. My wife has fought back. Ferociously! And she has given endo a fight to remember. She has researched her disease exhaustively. She has figured out that she actually has about 5 different diseases, some related to endo, some not. She explored treatment plans for each one of them. She has endured several surgeries, just like many other women with endo. She changed her diet. She has tried natural remedies, some of which have helped; she’s uncovered a unique physical therapy... read more
Amanda’s Endometriosis Story: Toronto Endomarch 2016

Amanda’s Endometriosis Story: Toronto Endomarch 2016

For a lot of women with endometriosis, they’ve had to deal with something that I like to the call the three misses – misdiagnosed, misunderstood, and missed moments. I’ve had to deal with these too. My name is Amanda Gullace and I am here to share my story with you. At First, I Didn’t Understand My Symptoms I vividly remember the day I got my period. My stomach hurt so I went to the bathroom, which was followed by a loud scream for my mom. I ran downstairs and my mom smiled at me and hugged me and told me “Congratulations, you’ve become a woman.”  She told my Dad, and then she proceeded to call family all over to tell them the great news. All I thought to myself was “What the heck is all the celebrating about? My stomach is killing me and how can someone bleed this much and not die?” If I only knew then what I knew now. My cycles were always heavy, 10 days long, terrible cramps, nausea, the whole shebang. I went to my family doctor and was told “Every girl has to deal with this; you have a low pain tolerance.”  And that I am a drama queen. She put me on birth control and said that this would help me, and when one didn’t work we would try another and another and another.  I did not understand symptoms of what I would later learn about myself. One day at work, my pain was so bad I had to leave; I didn’t want to go to the hospital, so I went to the... read more

Endometriosis Awareness in Alberta

It was the biggest day of my life. More impactful than the day I finally gained a diagnosis after more than a decade of going from doctor to doctor (same old story, isn’t it?). When I met Ashley Romanko I had already been organizing the 1st Annual Alberta Endometriosis Awareness Comedy Show wondering if any other women would be interested in something like that for Worldwide EndoMarch. I had spent months researching and calling to find local support in Canada only to be turned away from every place I desperately cold-called. Nobody knew about The Endometriosis Network Canada (I had to find out about it from World EndoMarch HQ in the USA), and there was nothing other than an online Facebook support group local to me. I needed real life support and meeting Ashley opened my eyes to the most special gift a woman with endometriosis could discover. I’m not sure what all we talked about that day, but there was a deep understanding of the horrors we had endured living with a complex disease most doctors in our past dismissed without a passing glance. I have a loving supportive family and strong network of support with friends and the comedy community in Canada, but that wasn’t enough until I met Ashley. We saw the exhaustion and pain in one another’s eyes and knew without words. We found hope that day. I can’t speak for Ashley, but that encounter saved my life. The comedy show was a success with a visit from Edmonton City Councilwoman, Bev Esslinger, in attendance to present me with an Official Proclamation recognizing Endometriosis Awareness... read more

Can you really have healthy bones without milk?

When working with patients, especially women, and I suggest they remove dairy from their diet, the first question they always ask is, “then how will I get my calcium”.  Despite the milk ads in the subway or on TV there are numerous ways to get calcium into your diet that don’t involve drinking milk.  In fact, because the lactose in milk is not easily digested by many people, vegetable sources for calcium may actually be a more readily available source of calcium.  Let me explain. Absorption Let’s start by understanding our digestive process and the effect food allergens have on it.  When we are eating food, we chew our food and swallow it so it can go down to our stomach.  Our stomach acid breaks down the food and then it passes to our small intestine.  This is the place where absorption happens.  Our small intestines have finger-like structures, called villi, which help us absorb nutrients, such as calcium, from the food which we just ate.  The villi are delicate structures which can easily become damaged, meaning we will have a harder time absorbing our nutrients. When we eat a food allergen such as dairy, the allergen irritates the lining in our small intestine causing inflammation.  This irritation and inflammation will cause damage to the villi, affecting our ability to absorb nutrients.  The good news is that our body can repair the villi by avoiding allergenic food, improving digestion and nutritional support. Non-Dairy Sources of Calcium So, as you can see, if you have an allergy or even sensitivity to dairy, you may not be absorbing the nutrient benefit... read more

Artist Margaret Kalms Raises Awareness of Endometriosis Through Art

  The “Our Bodies Our Blood” exhibition opens on Tuesday September 8 at Plan B, Halifax, Canada. ‘The Coast” article gives a good overview of the exhibition:http://www.thecoast.ca/halifax/show-with-the-flow/Content?oid=4904223I’m one of the exhibiting artists, the “Australian activist Margaret Kalms”. Author Adria Young is right to call me an activist as I’m raising awareness of endometriosis through photography. You may be interested to know more about the meaning and purpose of my art photography.‘Life with Endometriosis’ is an art photography project by Margaret Kalms that raises awareness by making endometriosis visible.Endometriosis affects one in ten women, which is a similar frequency as asthma or diabetes, yet few people know about it. It affects women worldwide, so it is appropriate that an Australian artist chooses to raise awareness worldwide, including an exhibition in Canada, “Our Bodies Our Blood”.Margaret recently showed her work in Canberra:http://citynews.com.au/2015/photography-project-highlights-painful-hidden-illness/and she spoke in April at an Information Day in Manchester hosted by Endometriosis UK:https://www.endometriosis-uk.org/life-endometriosisEndometriosis is caused by cells similar to the lining of the uterus, that can be found throughout the body of an endometriosis patient, and adhere to organs such as bladder, bowel, intestine, diaphragm and ovaries. These cells swell in response to normal hormonal cycle causing inflammation and debilitating pain. Endometriosis has huge impacts on women’s quality of life. It can cause infertility, chronic pain, reduced productivity and can exhaust the sufferer’s emotional and financial resources. Despite these enormous impacts, endometriosis is poorly understood. Margaret Kalms is raising awareness by making endometriosis visible.‘Life with Endometriosis’ is authentic because Margaret’s photography is directed by how women with endometriosis describe the impacts of endometriosis on their lives. Margaret explains, “Previously,... read more

Managing Chronic Pain While Traveling

Managing chronic pain day to day can be difficult enough. For those of us who enjoy traveling, it presents its own share of unique and frustrating challenges. Some people suffer with chronic pain so severe that they have to make the difficult decision to avoid traveling as much as possible. For those of us with chronic pain not quite so severe who are wanderlusts at heart, here are some of the challenges we face, and tips to help lessen their impact on your voyage: 1. Unpredictable pain Most people suffering from chronic pain will tell you that although it is chronic, that doesn’t usually mean constant. Pain fluctuates; sometimes there is a specific trigger, and sometimes it seems completely random. Murphy’s law, of course, dictates that pain will rear its ugly head at the worst possible times; boarding an airplane, in the middle of a guided tour, right after you’ve paid an exorbitant museum entrance fee, etc. So what can you do to overcome these potential vacation disasters? – keep a daily pain journal for a few weeks before your trip to try and pinpoint your triggers so you can avoid them on your trip; – use this to also try to determine what, if anything, helps you avoid a flare – exercise helps some suffers, but can trigger an episode for others; – leave yourself lots of time – stress is a common trigger, and cutting yourself short will increase your physical and mental stress levels; – have a flexible schedule and leave room for down time. 2. Traveling with medication Having the right medications and enough of... read more

Conference Highlights from the Endometriosis Foundation of America’s 2015 Medical Conference

The Endometriosis Foundation of America recently held their annual medical conference on endometriosis. If I had to sum up the messages from the three information-packed days of the conference, it would be that early diagnosis and intervention for endometriosis patients is extremely important, and we need continued research into ways we can accomplish this. Other interesting areas that were the subject of presentations included research into new treatment and diagnostic strategies, surgical considerations, and understanding pain mechanisms in endometriosis. Day 1 The highlight of the first day was the talk by Deborah Bush, co-founder and chief executive of Endometriosis New Zealand. She started out defining the scope of the endometriosis problem. Endometriosis affects one in ten women during the reproductive years, and even some men. Four percent of all women are affected, which amounts to approximately 176 million women worldwide. And yet we still don’t understand the causes of endometriosis, diagnosis is tricky, and there is not a lot of consensus about treatment guidelines. The best practice treatment guideline was published in 2013, through a global collaboration effort: “Consensus on current management of endometriosis.” With respect to the diagnostic delay, some important considerations to keep in mind are “the time of the diagnostic delay represents a whole changed person. It affects confidence and self-esteem” and “it takes a strong person to keep searching for care after continuously being told it is all in your head.” I think everyone who works in the field of endometriosis can agree that it is imperative to work to reduce the diagnostic delay. On the subject of treatment of endometriosis, Ms. Bush stated that... read more

Beneath Contempt: Politicians and Endometriosis Awareness

March is Endometriosis Awareness Month. Yesterday, I attended an event at Queen’s Park to promote that. It was well attended by people with Endo, but nobody else seemed to care. Invitations to the event were ignored by politicians, who didn’t even bother to regretfully decline. You know you’re beneath notice when you don’t even get a form letter. Recently, I’ve gotten into several arguments about our health care system. The Canadian health care system is pretty good at emergency care. If you’re injured, or have cancer, or something that needs immediate care, you don’t have to worry about access. It fails when it comes to chronic conditions. If you’re not about to die, then the system decides that you can be managed as a low priority. Enter Endometriosis. Endometriosis, especially if treated by excision surgery, in younger women, can reduce symptoms, preserve fertility, and allow for more productive lives. THIS IS WHY YOU SHOULD CARE. Even if you don’t “care”. More productive lives cost everyone less. Less money. Less tax burden. Less pain. BUT… many women with endometriosis aren’t even DIAGNOSED with endometrosis for 10+ years after symptoms start. Most aren’t treated with excision surgery at all. It’s just not available. They’re offered hormonal treatments that supress symptoms, but don’t cure underlying causes. They’re offered psychiatric drugs, because the first physician response is often to explain that something is wrong with them because they can’t handle normal period pain, or pain with sex, or can’t get pregnant because they’re too stressed or not at ease with their femininity. It’s not a disease. It’s your fault. Marriages fall apart. Careers... read more

Myth Buster: Endometriosis  

Misinformation abounds on the internet. It’s hard to know what’s fact and what’s myth. Deciphering the truth gets even trickier if you’re trying to research which natural healthcare option is best for you. We’re here to bust five common myths about healthcare and endometriosis.  Myth #1: My doctor says candida (yeast) is not a real problem and doesn’t affect endometriosis. Candida albicans (C. ablicans) is a type of yeast that lives in harmony with other microbes in our digestive tract and the female reproductive system. Candida only becomes a problem when the yeast population grows to outnumber the other microbes in our system. This is called candidiasis. Some doctors only view candidiasis as an issue for people living with HIV. This kind of yeast, however, is also responsible for causing thrush. Originally, the medical community considered candida a common yeast that caused no harm; however, more and more research is emerging about how candida is connected to other health concerns. A prominent endometriosis journal published an article in early 2013 stating: “Observations suggest that C. albicans may stimulate cell proliferation of endometrial cells from women with endometriosis.” It’s important to understand that the digestive and reproductive tracts are ecological environments, and it’s not about whether or not candida is present. It’s about the population of candida relevant to probiotic, the “good” bacteria in our gut. Reference: http://www.j-endometriosis.com/article/does-candida-albicans-play-a-role-in-the-etiology-of-endometriosis   Myth #2: All of this natural stuff sounds good, but there’s no research to back it up. Complementary and alternative medicine (CAM) is a large and growing field with an extensive history of research. Unfortunately, many natural products like herbs or... read more