The ERC Congratulates Bella on “This is Me”

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Bella B. was a competitive athlete for 9 years, until she was forced to retire due to unexplained, relentless back pain.  Her journey through more than three years of doctor’s appointments, endless tests, and a few misdiagnoses finally resulted in a diagnosis of Endometriosis at 16 years old. It was a difficult decision not to return to sports, but she did not want to allow this disease to define who she is.  She began modeling and pageantry, which led to combing her passion for the stage and her passion to raise awareness about Endometriosis, culminating in “This Is Me Fashion Benefit”, in support of the Endometriosis Research Center.  We are so grateful to and proud of Bella!

“This Is Me Fashion Benefit” had a fantastic turnout of over 250 guests, 6 vendor booths, 10 silent auction items, 6 designers, and 30 models, which was held at the National Hispanic Cultural Center in Albuquerque, NM.  Bella worked with countless community members to create an exciting show to break the stigma of talking about Endometriosis.  She is very active on social media and has had a number of people reach out to chat about Endometriosis.  She will graduate from high school this year and has applied to medical school, as she hopes to become a gynecologist, specializing in the excision of endometriosis. Congratulations, Bella!

Endometriosis to Receive Federal Research Funding from Dept of Defense for First Time in History

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Thanks to Shannon Cohn and the Endo What? Coalition working tirelessly with Senator Elizabeth Warren and Senator Orrin Hatch on a groundbreaking, bi-partisan initiative to create widespread awareness and meaningful change for the millions of people living with endometriosis, endometriosis will now receive research funding from the Dept. of Defense for the first time in history! As Endo What? explains, the DOD has a CDMRP (Congressionally Directed Medical Research Program) to pursue novel approaches to biomedical research that affects the American public, the military and Congress. As endometriosis affects all three of those population segments (directly or indirectly), it has been added to the program now for the first time. To learn more, be sure to visit www.EndoWhat.org and sign the Open Letter asking policy makers to address this urgent issue! Be sure to also watch the video announcement here: https://www.facebook.com/EndoWhat/videos/824992241038287/?t=0

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ERC Thanks Amanda, End Endo Charity Team & Har-Bro

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The ERC sends a HUGE THANK YOU to Amanda, Har-Bro, Inc. and their charity team, End Endo, for their generous contribution and all their awareness, education and fundraising efforts! Please take a moment to read their story…

Har-Bro, Inc. & the End Endo Charity Team

In early 2017, Har-Bro announced their Har-Bro Cares 2017 Team Challenge, which encouraged employees to form teams, chose a charity of their choice, write a proposal, and then work towards set goals for their chosen charity. Every team working to help out a charity received a donation to give to their chosen charity.

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The End Endo Charity Team was led by Amanda S. who lost her mom in April 2016. Amanda wrote:

“My mom was only 47 years old. Growing up as an only child to a single mother, we were always very close. Losing her has by far been the worst experience of my life, and I always wonder what else could have been done to prevent it.

My mom first noticed signs of Endometriosis in her teen years, but was not properly diagnosed until her late 30’s, due to the lack of knowledge and research of this disease. At that point, she already had stage IV Endometriosis. My mom suffered from chronic pain daily. Some days were better than others, some she could not even make it out of bed. The only treatment was to use a heating pad and take pain medication, and most of the time that didn’t even take away the pain. My mom also had multiple miscarriages due to complications of Endometriosis. After a few years of being on pain medications, with no relief, she found a doctor who suggested surgery to clean up the Endometriosis. She felt great for about a year, until it grew back. She ended up having 7 surgeries, including a complete hysterectomy. Each surgery caused more adhesions. None of these surgeries cured her from Endometriosis, as it always made its way back.

I saw first hand how this disease drastically diminished my mom’s quality of life, and it was devastating. This disease not only affected my mom, but myself and our family and friends as well. Losing her has forever changed our lives. Although I find peace knowing she is no longer suffering, every day I wish she could have been cured of Endometriosis. The fact that some doctors my mom saw didn’t have much knowledge on Endometriosis proves that there is not enough awareness of this life changing disease. Knowing that so many women suffer from this disease is heartbreaking and it’s time more people are aware and more research is done to find a cure!”

The End Endo Charity team shared with us how they organized and/or participated in the following as part of their awareness, education and fundraising efforts:

“First, the End Endo Charity team held a Super Bowl pool and a raffle. Then, in March 2017, our charity team participated in the Los Angeles EndoMarch. For our effort in participating and raising awareness, Har-Bro made an additional donation.

In addition, we hosted a charity breakfast at work. Once a quarter, Har-Bro hosts a company breakfast for all employees. Instead of them hosting, we offered to prepare the breakfast using the funds they would normally buy breakfast with. We were able to save money by buying everything and cooking it all ourselves, which rewarded us additional funds to donate to the ERC.

It has been such a pleasure raising money and awareness for something that means so much to us. We hope one day, women of all ages with Endometriosis are cured and no longer living in pain!”

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Lupron: A poor diagnostic tool

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In my work with The Endometriosis Network Canada, I have heard many women say that their doctors told them that if their pain does not go away on Lupron, then the pain must not be from endometriosis. Lupron never has and never will be an effective tool for diagnosing whether pain is due to endometriosis. Not only does Lupron have the potential for significant side effects, which alone should abrogate its use as a diagnostic tool, but it also is not at all effective at diagnosing endometriosis and distinguishing it from other conditions.

Lupron is a synthetic version of a naturally occurring hormone called gonadotropin-releasing hormone, and its action is actually stronger than the naturally occurring GnRH. It is a long-acting medication that initially stimulates hormones in the pituitary gland that control the menstrual cycle, and then suppresses these functions. It is typically given as a 1 month or 3 month injection.

 

Read more of the original article By: Mar 14, 2016 by 

Is life long pain a given?

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Nancy Petersen, RN: While I do not have command of the full literature on pain and its complex underlying issues, I want to address endometriosis generated pain. We often see women in our large Facebook groups resigned to a life of chronic severe pain.

These groups of women number in the 10’s of thousands on the various boards I monitor and counsel. The common denominator is most still have active, inadequately treated endometriosis after experiencing all most all gynecology has to offer. Something is definitely amiss. When a 100,000 patients a week or so are asking for help, for relief, for understanding we have to ask are we really doing enough to relieve pelvic pain?

I think in the presence of endometriosis, given my 30 years of watching the field and advocating/educating women with endometriosis, we should start with the basics. Without a doubt, many of the patients I have seen since the mid 1980’s have had dramatic relief of their endometriosis associated pain, relief which persists today as I still hear from many from time to time. The key seems to be meticulous removal of disease. Key factors seem to be the surgeons understanding of what endo looks like through all of its evolution in color appearance and the statistical distribution of disease and how that correlates with symptoms. Since endo is a multi-factoral disease, some times multiple specialties are required to adequately address that.

We see some centers utilizing teams of surgeons to see this group of patients, so the individual surgeons become highly skilled through constant exposure to complex cases. For instance a colo-rectal surgeon with repeated exposure to endometriosis of the intestinal tract will learn very quickly that colostomies and ileostomies are largely, (almost always ) unnecessary. Yet if a patient is exposed to a colorectal surgeon with out that team experience, often they are told they will need such an intervention. In any event, lesions on or near the bowel need to be addressed surgically if pain relief is one of the goals as medication does not “clean endo up.” Often patients have been told substantial disease was left on the bowel because it was inoperable. In most cases this would not fit with the experience of those who see this disease every day.

Endo what?

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It’s Time for a New Normal.

A normal where women with endometriosis know the facts and can make empowered choices. A normal that doesn’t involve multiple doctors, surgeries, misdiagnoses and years of pain.

The only film of its kind, Endo What presents solid, accurate information straight from the experts. They answer the questions you have, but aren’t able to ask.

They answer the questions you never even knew to ask.

Just one Caveat. (Spoiler alert)

There’s no quick fix. No easy answer. But, it is possible. You can live a full, vibrant life with endometriosis. You may have endo, but endo does not have you.

It’s time to make a real & lasting change in the narrative of this disease. It’s time to stop the vicious cycle of misinformation. The new normal starts now. It starts here with you.

Take this film & take control of your life.

Every Girl. Every Woman.

An estimated 176 million women around the world have endometriosis. Our goal is to reach every one of them.

You can help make that happen. When you buy the film, , choose to donate a DVD to a school or library. You say where or we’ll pick from our list, then send it on your behalf.

What is Endometriosis?