Endometriosis Awareness Month 2015

 

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March is Endometriosis Awareness Month.

I share this story with you because I, myself, have Endometriosis. I have written about my experience in the past–here and here. I hope that by writing about it again this month, I may be able to help at least one person who is suffering in silence.

What is “Endometriosis” or “Endo” (for short)? The Endometriosis Network of Canada describes it as:

A complex and often debilitating disease affecting more than 176 million women worldwide, and in rare cases, men. Although endometriosis is currently incurable, there are effective treatments for the disease. Having an accurate diagnosis and getting treatment from an endometriosis specialist are important steps in attaining relief from endometriosis symptoms.

 

The most common symptom of Endo is painful periods. No, not cramps. But pain.

Everyone experiences pain differently, but if you suspect that you have periods more painful than normal, there is a 1 in 10 chance that you might actually have Endo. That’s right, 1 in 10 women is the statistic.

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Other symptoms include:

  • Disabling or increasingly painful menstrual cycles
  • Pelvic pain at any time of the cycle
  • Cycles of constipation and diarrhea
  • Abdominal bloating
  • Nausea and vomiting
  • Painful bowel movements
  • Bladder pain/dysfunctionPain with sex
  • Back or leg pain during menstruation
  • Pelvic pain with exercise
  • Infertility or pregnancy loss
  • Fatigue

We are still unsure how people get Endo in the body, but it is suspected that it is genetic. It is not contagious, however. There is no cure for Endo – only management. Laparoscopic surgery is used to remove the Endo, but it usually grows back after varying amounts of time, and the wait time for a specialist is over 1 year.

The people that I have met with Endo are true warriors. Endo affects every part of our lives and we must take it everywhere we go with us, and yet no one can see it as it is an invisible illness. A lot of people with Endo experience symptoms that prevent them from being able to carry out regular day-to-day duties such as taking a shower and going to work. There was a time where I, myself, had difficulty getting out of bed in the morning, and I had to figure out if I had to move back in with my parents or if there was something I could do. I was very lucky in the sense that a change of diet to non-inflammatory foods has helped me a lot. However, other people are not as lucky, and need intensive surgery just in order to survive. With the lack of awareness, a lot of people may never even get diagnosed and will often hear that it’s all in their head and that they should just take an Advil (which, by the way, does absolutely nothing – the people who take painkillers for this disease are on heavy painkillers daily.) Can you imagine how traumatizing it is to feel like a knife is trying to cut its way out of your body on a daily basis, waking you up at night and stopping you from being able to do normal things, and for your doctor to tell you it’s all in your head? Yeah…

Here is a video of one warrior’s experience with Endo.

 

This month, it is important to raise awareness for this disease. Learn about what it is, come out to the Endo March this year on March 28th (Toronto location TBA), and help a friend if you hear that they are experiencing this kind of pain. You could change their whole life for the better if you suggest that they might have Endo. Because, from what all of us Endo Warriors have experienced, our doctors aren’t going to do that for us.

 

– Sarah

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