Aly Needs Our Help: An Endometriosis Survey

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Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

If you didn’t read Aly’s Endometriosis journey, you can do that here.  Or here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She’s also open to suggestions for the content, as well.  If you’d like to participate, here is the link to her survey:  https://apps.facebook.com/my-surveys/endometriosis?from=admin_wall&seed=838

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.

2019 Endo Events Around the Globe

2019

Hopefully you can find an event near you; just click on the title of the event and it will bring you to more information.  I’ll add to this as I find new events! If YOU have an event you’d like me to add, please email me here.

United Kingdom:

Birmingham – May 25, 2019 – EndoBall 2019

Brighton – April 14, 2019 – Brighton Marathon 2019

London – March 23, 2019 – Worldwide EndoMarch UK – London

United States:

California; Los Angeles – March 30, 2019 – LA EndoMarch 2019

California; San Diego – March 30, 2019 – Bloomin’ Uterus Endometriosis Awareness & Support Walk

New Jersey; Saddle Brook – March 23, 2019 – 3rd Annual Our Journey 5K for Endometriosis

New Jersey; Saddle Brook – March 23, 2019 – Our Journey Endo Walk

Documentary: Stronger Than Endo

My good friend Exxes Hauffen owns Compass Media Productions. One day he asked me, “What’s all this uterus business about?” – regarding all of my Facebook posts. So, I told him about Endometriosis and his next question was, “How can I help?”

Thus the beginnings of “Stronger Than Endo.”

A few local San Diegan Endo Sisters volunteered to share their stories and struggles. Exxes focused more on the emotional and quality-of-life aspects of the illness, rather than the physical symptoms that we are already so aware of.

We also interviewed my gynecologist and Endometriosis excision surgeon, Dr. Mel Kurtulus, of San Diego Women’s Health.

What you watch today is the end result of months of hard work. I am honored by the voice Exxes has granted us.

Exxes, thank you for your endless hours of dedication, for the passion that burned so brightly within you during the interviews, your hunger for knowledge, and your undying desire to bring awareness to this disease.

To Dr. Kurtulus, thank you for dedicating an afternoon of your time to this project, for your endless compassion and drive to give each EndoSister a greater chance at normalcy, and for giving me my life back. Your passion is evident every time I see you. And your “approachableness” is one of my favorite qualities you possess. You’re incredible; not just as a physician, but as a human being.

To Heidi, Merritt, and Zeiddy, I will never be able to thank you Brave Warriors enough. Not only for opening up your hearts to the world but for your ongoing support and love you have for other EndoSisters, even while you endure your own Battles.

This is truly a labor of love. Exxes filmed, edited, and produced this documentary free of charge. Dr. Kurtulus was not compensated for his time. And neither were myself or the interviewed EndoSisters. We hope that you enjoy, embrace, and share this video.

Without further ado, I give you “Stronger Than Endo”:

The full interviews with each EndoSister and Dr. Kurtulus will be made available shortly and shared separately.

And Exxes isn’t done yet. He’d like to continue interviewing EndoSisters and sharing our Journeys.
A note:

The views and opinions expressed in this video are purely that: opinions. We understand that there are several theories as to the cause of Endometriosis, as well as the treatments. No one theory is correct. And we honor all opinions.

Free Endo Webinar

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Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! Tuesday, April 17, 2018, at 6:00pm (Pacific Standard Time) they’re offering a free online webinar featuring Jillian Schurr and Jenneh Bock from The Endo Coalition.

If you’d like to log on and attend, please email Megan at Megan@RMCcharity.org.  Registration is free but required.

A huge thank you to Megan and the Endometriosis Family Support Group for all that they do!  For more information on their organization and when they meet, please click here.

Our 2018 Endometriosis Awareness & Support Walk

 

2018 group picture
Photo by Exxes Fritz Hauffen

Oh man!  I cannot tell you how wonderfully excited I am after this weekend’s walk!

It was the 4th Annual Bloomin’ Uterus Awareness & Support Walk in San Diego and it was our largest one yet!  Out of 150 registered walkers, 120 people joined us.  It was awesome! Thank you, everyone, who attended!

This year, we raised $1,317.90 for the Endometriosis Foundation of America, totaling $7,065.44 raised since 2014.  A HUGE thank you to everyone who donated or purchased t-shirts!  We were able to once again surpass our fundraising goal!  And due to an incredible donation by my employers, we were able to hand out free Bloomin’ Uterus buttons to everyone!  I’m just flabbergasted!

This is my fourth year hosting our walk.  When I received my diagnosis, there was nothing in San Diego and I needed something.  Absolutely needed it.  Does that need ever diminish?  I must say: nope.  Being able to be around EndoSisters who understand, to be able to hug their friends and family and thank them for their support, and to watch other EndoSisters meet and interact: it’s awesome.  And it really drives home that the need to be around people who get it…around people who aren’t judgmental…is critical to our mental well-being.  Well, mine at least.  And we even met a few people along our route that had Endometriosis and will join us next year!

 

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All of us EndoSisters; photo courtesy of Timbrely Pearsley

 

 

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And each of our friends & family who support us <3; photo courtesy of Timbrely Pearsley

 

I’m still floating on Cloud 9.

Prior to the walk, 34 EndoSisters completed a survey about their Endometriosis.  This sign was displayed at our check-in desk; a way of affirming that we truly aren’t alone in our fight.

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The little pie chart in the center is asking if surgery (whether it be excision, ablation, or hysterectomy) helped with their Endo symptoms and pain.  The responses were:

1 – It’s worse than before

1 – No Endo was removed during surgery

5 – Yes

10 – No

17 – It did for a while

And my favorite part?  We’ve all been told that Endometriosis developing on the spine is “incredibly rare”…yet three, yes THREE, of the 34 women who answered this survey have a confirmed diagnosis of Endometriosis on their spines.  Talk about embracing the fact that you aren’t alone!

If you’d like to see all of the photographs and video shared by our attendees, please click here.

This year, seven of us delivered a speech together.  There’s video out there of the speech (filmed by the wonderful Alyssa Menard):

If you can’t hear passed our sniffles and snorts and giggles and airplanes flying overhead, our words are below.  I wanted to send a loving thank you to those brave women who volunteered to speak with me:

Lisa:  Thank you, everyone, for coming today. I cannot express enough how much it means to me…to each of us.  Can I have all of my EndoSisters join me over here? Many of us were not taken seriously when we would discuss our pain.  It may have been dismissed, we were called fakers or weak, or told that it was all in our heads. We’ve heard “Nothing is wrong” or “Pop an Advil”  or my personal favorite, “Periods aren’t that bad. Suck it up.” Words like this, treatment like this, is demeaning to an already crushed soul. I gave up.  I figured it was normal. And that I was weak, crazy, or just cursed.

Mirna:  Our pain has a name: Endometriosis.  We aren’t crazy, we aren’t weak, and we aren’t faking.  But even with a diagnosis, sometimes our pain still isn’t taken seriously and we are dismissed or judged by the medical community, employers, coworkers, friends, or even family.

Jessica:  We are here today to change that.  1 in 10 women suffer, but here we are walking side by side, a mighty force of Warriors.  Warriors with an ultimatum to Endo: we will overcome!! We will not be beat. And we are not alone.  We may have days where we are forced down, stuck in bed, or in agony as we go about our day…but we will rise again.  And we stand with the help of our Sisters, our family, and our friends.

Kelly:  Endo just doesn’t cause physical pain.  Sometimes we feel like an incomplete woman, robbed of so many dreams.  And some of us can be jealous of those who have children, don’t have to carry a small pharmacy around in their purse, or can live a fulfilling and active life.  But this community that we’ve built together personally helps me cope with the physical and mental downers. Someone, maybe even you, has been there to support me when I needed it.  And here we are today, lifting each other up. This is what we are all about. We are Sisters. We are family. When you go home, please don’t let this energy that you’re feeling die.

Gloria:  Friends and family, please listen when we tell you that we are hurting, or we can’t go do something because of a flare-up; don’t judge or criticize us or think we’re lying.  Continue to offer that compassion and support I know you all have within you.

Meghan:  And to my EndoSisters, stay strong, be there for one another, and don’t be afraid to self-advocate.  Push your physicians to do their research to better understand how best to handle our illness. And if you don’t agree with their opinions or tactics, find another doctor.  There are great ones out there.

Melinda:  One day there will be a better understanding of this illness; of this enemy we all fight together.  But until that day, let us hold our heads high and march on. I am grateful for each of you. We are grateful for you.  Thank you.

**

I am so excited and looking forward to next year.  If you’re interested in joining us for 2019, stay tuned!

And remember, we are all incredibly strong and powerful. And we can stand up to Endo…Together!

If you would like to read about our prior walks, here’s the information:  2017 Endo Walk at Shelter Island, 2016 Endo Walk at Lake Miramar, and 2015  Endo Walk at Lake Miramar.

 

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A SUPER EndoSister, Toni. Photo by Exxes Fritz Hauffen

 

Endo Webinar Video

A huge thanks to the Endometriosis Family Support Group and the Riverside Medical Clinic Charitable Foundation.  Last night Meghan Cleary spoke about “Why Won’t My Insurance Pay for my Endometriosis Surgery? How Clinical Gender Bias Delays Diagnosis and Treatment – And What You Can Do About It”. Here is the link to the webinar: