Free Endo Webinar

unnamed

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!

 

endosisters
All of us EndoSisters; photo courtesy of Timbrely Pearsley

 

 

support
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.

Percentage Breakdown 24x36 copy

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.

 

28828538_10160130368455024_6969357097814032619_o
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:

2018 Endo Events Around the World

text-2884720_960_720

If YOU have an event you’d like me to add, please email me here.

Internet:

January 17, 2018, 6:30pm (PST).  Endometriosis Family Support Group Webinar: Casey Berna, Endometriosis Counselor and Patient Advocate 

 

Australia:

 

Adelaide – March 24, 2018.  Worldwide EndoMarch

Brisbane – January 30, 2018.  Beat Endometriosis workshop

Brisbane – March 24, 2018.  Worldwide EndoMarch

Canberra – March 24, 2018.  Worldwide EndoMarch

Hobart – March 24, 2018.  Worldwide EndoMarch

Melbourne – March 24, 2018.  Worldwide EndoMarch

Perch – March 24, 2018.  Worldwide EndoMarch

Sydney – Mach 24, 2018.  Worldwide EndoMarch

Toowoomba – March 10, 2018.  EndoMeet

Wollongong – March 24, 2018. Worldwide EndoMarch

 

Canada:

Alberta – June 16, 2018.  Run to End Endo

 

South Africa:

Johannesburg – March 17, 2018.  High Tea for Endometriosis Awareness

Johannesburg – March 24, 2018.  World Wide EndoMarch

 

New Zealand:

Hamilton – March 14, 2018.  The Purple Walk for Endometriosis

Wellington – January 25, 2018.  Wellington Endometriosis Support Group Meeting

 

Nigeria:

Lagos – March 31, 2018.  #BleedYellow (email here for information)

United Kingdom:

Birmingham – May 19, 2018.  Endo Ball 2018

Edinburgh – January 27, 2018.  Women’s Health: Pelvic Pain & Endometriosis

Leeds – March 3, 2018.  The Primrose Ball

Lincoln – March 10, 2018.  The Yellowbelly Ball 

Totnes – January 24, 2018.  Endometriosis Support Group Meeting

York – February 14, 2018.  Understanding, Diagnosing and Treating Endometriosis workshop

 

United States:

California – Los Angeles, March 25, 2018.  Tea & Talk with Everything Endo. 

California – San Diego; March 24, 2018.  Bloomin’ Uterus Endometriosis Awareness & Support Walk

California  – San Francisco; March 24, 2018.  Worldwide Endometriosis March 2018

Delaware – Newark; March 17, 2018.  The Yellow Cape’s 4th Annual Endometriosis Awareness Event

Florida – Wesley Chapel; March 13, 2018.  Breaking the Silence on Endometriosis

Massachusetts – Boston; March 24, 2018.  NE Endometriosis March 2018

Massachusetts – Somerville; February 7, 2018.  Endometriosis Support Group Meeting

Michigan – Lansing; March 20, 2018.  Endometriosis Awareness meeting and discussion

Michigan – Royal Oak; March 31, 2018.  Yoga for a Cause. Endometriosis Awareness Month

New York – New York City; March 19, 2018.  Endometriosis Foundation of America’s Blossom Ball

Ohio – Columbus; March 24, 2018.  Team Ohio Endometriosis Awareness Walk

Utah – Salt Lake City; March 24, 2018.  Endometriosis Awareness Day

Washington, D.C.; March 24, 2018.  EndoMarch Washington, D.C.