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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Menstrual Cramp Sufferers Needed for Product Focus Study Group

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The Endometriosis Research Center (ERC) is assisting a private company with recruitment for a product study focus group that will test the efficacy of an all natural, non-pharmaceutical, oral supplement developed to reduce or relieve menstrual cramps. Participants will be required to test the product for three (3) full menstrual cycles. This includes taking the oral supplement and reporting your experience, assessment and results every month through electronic means.

The following criteria must be met for the duration of the product focus study (please read carefully):

  • Age 18 to 35 years old
  • U.S. Resident
  • Regular menstrual cycles – generally, 21-35 days with 2-7 days of flow
  • Moderate to severe dysmenorrhea (menstrual cramps/painful periods)
  • No IUD in place
  • Not taking oral contraceptive pills
  • Not pregnant or planning to become pregnant; not nursing throughout duration of study
  • Agree to have your contact information (name, address) shared with the private company, as they will be directly shipping the product to you and collecting your assessments and results through electronic means. Your information will not be used for any other purpose and you will not be added to any mailing or contact lists.

Please note: computer access is required to complete “Participation & Consent Form.”

If you are interested in participating and meet and agree to the above criteria, please send an email to ERCResearch@endocenter.org with the subject heading: FOCUS GROUP

Upon receipt, the ERC will email you the “Participation & Consent Form” that must be completed and returned to ERCResearch@endocenter.org for consideration in the product study focus group. All individuals who participate in the entire three-month product study focus group will be sent a FREE supply of the product.

Recruitment is ongoing through October 6, 2017.

ERC Disclaimers:

The ERC does not recommend, is not affiliated with, nor endorses any external links, organizations, physicians or treatment methods. The ERC is assisting with this product study focus group to learn if this product is a non-pharmaceutical option that may provide relief to those suffering with debilitating menstrual cramps associated with endometriosis.

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ERC Launches Book Fundraiser

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The Endometriosis Research Center (ERC) has hundreds of brand new copies of Royal Di-lemma, which were donated to assist with fundraising efforts. Please help us raise $ while enjoying a fun, engaging, quick read. All proceeds will be 100% received by the ERC.

Royal Di-lemma makes a great gift. A donation is requested (suggested $1 – $5); all donation offers are being accepted.

Royal Di-lemma is a 357 page hardcover mystery novel. It is printed on the finest quality text paper and a brilliantly designed dust cover with gold embossing and film lamination to protect it for a lifetime. A ribbon page marker is also included as a special touch, allowing readers to easily bookmark their page.

Royal Di-lemma is a gripping story about an English Princess who is killed in a Paris tunnel. Was it an accident or murder? This a fast moving, thrilling story of romance between a People’s Princess and the son of a powerful, wealthy man determined to gain British citizenship – at any cost. The book will keep you reading all the way to the end when a shocking twist in the tale is sure not to disappoint.

The book received 5-stars. One reviewer wrote, “Royal Di-lemma is a roller coaster thrill ride through streets, on water, and in the air. You may think you know what is coming as you turn the page, but what you read will surprise you.” Another reviewer said, “It is a great, engaging quick read.” A Colorado reader wrote, “What a spoof on the firm (Royal Family)! I thank you for the entertaining reading.” Another reviewer simply said, “I love it.”

Books will be shipped via USPS Media Mail; shipping costs will apply to all orders, which is approximately $3.09 per book. If you are interested in purchasing multiple copies or have questions, please email the ERC at askerc@endocenter.org; please put “BOOK” as the subject heading.

Thank you for helping us raise funds for Endometriosis education and awareness!

ORDER FORM

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?

Acute pain in a woman stomach

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?