Endometriosis Awareness in Alberta

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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 Month for Worldwide EndoMarch. From there I started monthly support meets in my city which usually meant I was sitting at a table for ten alone with gift bags, happy face balloons, and TENC materials in case a brave woman might take the plunge and accept my outstretched hand. On rare occasion a woman would surprise me and we would share that discovery Ashley and I had shared the day we met.

We would part ways promising to keep in touch (we always do). She with a happy face balloon, her gift bag, and armed with resources no doctor ever shared with her. I left even more determined to reach more women (one day there would be ten).

That summer I met Sandra Engstrom, a fellow Canuck who founded a support group in Scotland. We were introduced by TENC and fast became partners planning for the next Worldwide EndoMarch sharing our combined experience with blind ambition.

By 2015 our monthly events featured special guest speakers carefully vetted to ensure patients would not be subjected to sales pitches or marketing models. Everywhere we turn we have other patients trying to sell us things, doctors trying to sell their treatments abroad, magical holistic cures (there’s no such thing), and I wanted us to have a space where our vulnerability wasn’t a dollar sign. A safe, non-judgmental space for voices to be heard and BELIEVED!

Sandra and I put together our first Alberta Endometriosis Information Day attended by professionals, patients, and families from across Canada where we met women that have gone on to found efforts in other provinces. I plugged away at the 2nd Annual Alberta Endometriosis Awareness Comedy Show, but most of those days are a blur for me.

I traveled across Alberta for media interviews, national television spots, radio, and performances as I balanced rehearsals for a show in the world’s second largest fringe theater festival. I was supposed to be plugging my projects, but I turned everything into an opportunity to raise awareness for endometriosis and promote our Worldwide EndoMarch efforts. It was far too much and I’ve scaled back this year, but worth every moment.

I didn’t have time to absorb the impact we were creating in Alberta as our monthly support events grew and Jen Sukovieff continued to organize support in Calgary, Alberta with us. We were growing, but all I saw was more and more women finding hope and sharing the magic Ashley and I shared that first day we met.

It wasn’t until I was notified NDP MLA David Eggen delivered my Address to the Alberta Legislative Assembly that I realized what it was we were doing. I had been calling for a revolution and the doors began to open a crack for us to see a light everyone told us wasn’t possible.

I keep being told that the time isn’t right for endometriosis. We can’t just ask for change. Women of affluence and influence, politicians, and doctors have insisted we would need to wait for our time.

Our group has grown in the hundreds. Our reach has gained in the thousands across Western Canada with regular engagement and our comedy shows are going international with dates coming up in London, UK and the USA. I have paid for this out of my own pocket for the last three years, but we desire to grow with community engagement. 2016 has generated interest in supporting our efforts by investing in us. RDK Electric made hats for our EndoMarch team and we have been approached about t-shirts to make 2016 extra special for our eclectic group of amazing endo warriors from various backgrounds coming together so the next generation of women won’t have to walk in our shoes.

The greatest pleasure as a model, spokesperson, and traveling to perform stand-up comedy, is being able to bring ladies with me on the road so they can meet one another overcoming distance to bring the gift of in-person support and contact in the hands of women (and a couple of men) ready and waiting to lift them. On these travels I’ve been able to meet with doctors, gynecologists, and professionals from various backgrounds to bring TENC materials to their offices to share with their patients. It has developed that doctors and professionals are now seeking me out to share in the dialogue for patient-centered care in a more collaborative effort which I welcome warmly and wish to listen intently to their side. Every single medical professional I have sat down with aspires to help patients to the best of their ability, but many just don’t know what they don’t know and for this I’m very grateful to Worldwide EndoMarch for making possible for us.

We are developing several other cities in Alberta with the same model I started three years ago because we know if we build it they will find us.

Women are finding us and lives are changing with an unexpected residual result. The lives of husbands and families are improving as they attend our informational events and learn we support them supporting us on our journey.

I’m not going to wait for a “better time”, or for the opportunity to ask for permission.

The tides of change are rising higher and reaching further, but the waters part around us as the rip-tide rushes toward us because we are no longer isolated and alone struggling to breathe. We now have a network of dedicated professionals helping to address the mental, emotional, physical, sexual, and spiritual implications of this devastating disease with strong engaged support that BELIEVES the battle is real. It is tangible and designed to improve quality of life with quality of spirit because it may not be cancer, but suffering isn’t a competition with a gold medal for the person that has it the worst.

A united front in Canada is absolutely essential to get this done! It is amazing to see the number of cities hosting EndoMarch Canada 2016 from small efforts that began in Toronto and Edmonton three years ago.

We have a long way to go, but my A Wish Noted wish three years ago seemed like another generation’s possibility. There have been times I’ve wondered if people are invested enough to make this work, but each month when I walk through the doors to the new and familiar faces at our support events I know there is no turning back. The doctors, surgeons, gynecologists, acupuncturists, Reiki masters, holistic reproductive professionals, nutritionists, pain specialists, pelvic pain physiotherapists, Mayan massage therapist, (okay, we have an ARMY of professionals too long to list), and endo warriors have started a revolution for endometriosis in Alberta.

I don’t know what EndoMarch 2016 has in store for us because each year has brought us more than our hopes and dreams imagined. We look forward to the big Alberta Endometriosis Awareness Comedy Shows across Alberta and the rally at Alberta Legislature on May 7th. We hope Alberta will begin to rally with us and decide $1.8 billion per year in wasted tax dollars is enough!

Our hope is for every gynecologist to have TENC packages for their patients and Worldwide EndoMarch to become a household name.

A Wish Noted,