Blog dedicated primarily to randomly selected news items; comments reflecting personal perceptions

Saturday, March 24, 2018

"I feel like my pelvic area is being stabbed with metal spikes that are on fire and that I feel a constant hard blow to my stomach that, on many occasions, makes me feel faint."
"Nausea, chronic fatigue, pain all over my body, difficulty sleeping, difficulty digesting food and painful urination are some of my chronic issues I deal with."
"No, it is not just a painful period, the excruciating period pain that, sometimes with no awareness at that moment, led me to tear my bed sheets from how tight I'd pull on them during my worst days."
"I was told I was crazy by many doctors or that I needed to just see a psychiatrist. Some even told me I was exaggerating just so I can get a prescription to strong pain medication."
"I decided to be vocal and go public with my story. I wanted to get any girl's attention that was still feeling the need to suffer in silence to try and stand up and believe her body and symptoms, and try her best to get answers and not give up."
Carine Boustani, 24, endometriosis sufferer
Carine Boustani is the Ottawa team leader of the Worldwide Endometriosis March. Errol McGihon / Postmedia

"Endometriosis, by definition, is tissue that's similar to the lining of the uterus implanting itself outside the uterus."
"It can be present most often on the pelvic organs, uterus, ovaries and Fallopian tubes. Every month, instead of having a normal period, the bleeding that results from the tissues on these organs can cause havoc and damage to the internal organs."
"Pain is very important to treat early on, regardless of the cause. When it is not treated early on, it can become chronic and then the brain senses harm, not just on a monthly basis. It perceives that there may be harm on a daily basis."
"Talking about periods isn't gross, isn't dirty, isn't disgusting. It's a normal part of being human, and until we get over the embarrassment, we won't move forward. Make it dinnertime conversation. Normalize it. That's going to be our goal."
Dr. Sony Sukhbir Singh, vice-chair, Gynecology, The Ottawa Hospital
Pain and infertility, two frightening words usually associated with Endometriosis, an abnormal growth of endometrial cells outside of the uterus. This chronic illness affects approximately 1 in 10 women and to date, even more concerning, the exact cause of it has not been identified. There is no cure.

According to the World Endometriosis Society this is a medical-health disorder affecting over 176 million women throughout the world. Despite its surprising prevalence it is a condition that remains largely undiagnosed by medical professionals. Additionally, this is a condition experienced differently by any woman whom it affects.

Carine Boustani, now the Ottawa team leader of the Worldwide Endometriosis awareness campaign that takes place every March, was informed by all the doctors she approached for diagnosis and help, as being "normal", despite her anything-but-normal symptoms, their persistence and the misery her life has become as a victim of this medical condition. This diagnosis of normalcy is ordinarily a most reassuring one for anyone who seeks out medical advice, but for obvious reasons it did nothing to reassure this woman whose symptoms were disbelieved.

She saw no fewer than eight doctors, none of whom appeared capable of diagnosing her problem. Through her own research she managed to discover that what she was suffering from was a condition afflicting one in ten women of reproductive age. Why, she then wondered, was it so difficult for the medical community to recognize its prevalence and its symptoms? Of a condition that affects so many women? Might that be construed as the normal part, that so many women suffered from it, giving it an aura of normalcy?

Are women held universally to be chronic complainers and thus to have their concerns shunted aside? That led her to begin thinking how many women she personally knew had symptoms of endometriosis, had no idea what was troubling them; the result being their symptoms were not being treated. Mostly because their concerns were not being taken seriously. If women fail to seek out proper treatment, points out gynecologist Dr. Singh, the pain they undergo during menstruation has the potential to develop toward daily pain, possibly leading to infertility.

The more she learned about endometriosis, the more forlorn Ms. Boustani felt. That took an emotional toll, directing her to advocate for awareness of the condition, to reach out to women who could be experiencing pain similar to her own, along with the confusion that she was left with when there seemed to be no readily attainable medical answers to her questions. Hers has not been an easy journey; her diagnosis led to six surgeries; and several hormonal treatment rounds which induced menopause.

She has had her gallbladder removed, has developed fibromyalgia and postural orthostatic tachycardia syndrome. She has had to undergo treatment for depression brought on by the hormonal treatments. Worldwide Endometriosis March is now occurring in over 50 countries where women are invited to publicly share their stories, to wear yellow in solidarity, and to help end the stigma seen to be attached to women's sexual health and reproductive functions.

"If we don't insist on our symptoms, don't try to be taken seriously, and give up on advocating for ourselves, then we're going to continue being ignored and the stigma of painful periods and it being normal will remain. We need to educate the community as a whole, not just women", she insists, and with obvious good reason.


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