WHAT IS ENDOMETRIOSIS?

In the simplest terms, endometriosis is tissue similar to the lining of the uterus that is found outside the uterus, on other parts of the body. This rogue tissue creates lesions that become inflamed, bleed, and break down causing pain, scar tissue, and inflammation. Even though it’s mostly found in the pelvis, it can also be found on odd places like the bladder, bowels, appendix, diaphragm, and even lungs.

 
As a non-profit, every effort The Endometriosis Coalition makes to raise disease awareness, promote education, and increase research funding is centered around our guiding principles:
 

INFORMED

 

We pride ourselves in actively acquiring the knowledge needed to better understand how to help those battling Endometriosis

EMPOWERED

We strive to provide access to information that leaves women feeling confident and knowledgeable in understanding this disease

RESILIENT

Living with Endometriosis ourselves, we understand that change will not take place overnight. We are committed to creating true and lasting change despite the obstacles we may face

INSPIRING

We aim to positively influence the lives of, and provide hope to those who are battling Endometriosis

 

 WE EDUCATE

WE EMPOWER

WE STAY CONNECTED

visit our Instagram page @theendo.co to see what we're up to!

 

There are 4 factors that we feel prevent women from receiving adequate care

 

One: Lack of awareness amongst the general public

176 million women globally are affected by Endometriosis

1 in 10 women in the US are living with the disease; many struggle in silence

Treating Endometriosis costs the nation an estimated $119 billion annually


two: Misinformation amongst medical professionals 

The average time between symptom onset and diagnosis is 10 years

Hysterectomy is often presented as a cure, despite the fact that current medical literature proves it to be an ineffective treatment

Hormone suppression is highly regarded as an acceptable treatment of the disease itself, when in actuality, it only masks the symptoms

Despite statistical evidence that shows women who undergo excision surgery have better long term outcomes, many OBGYNs do not acknowledge excision surgery as the gold standard of treatment

There is a general lack of surgical skill to properly perform excision


three: LACK OF GOVERNMENT FUNDING

The National Institute of Health (NIH) had a budget in 2018 of $37.3 billion, yet Endometriosis only received $7 million

The amount of funding received for Endometriosis is much smaller when compared to other diseases that affect close to the same number of people


four: LACK OF INSURANCE COVERAGE

Despite current research and favorable outcomes, excision surgery is viewed as an investigational service by many insurance companies

No incentives exist to improve quality of treatment because endometriosis specialists are reimbursed at the same rate as regular OBGYNs

An Endometriosis specialist who performs a 4 to 6 hour excision surgery will receive the same reimbursement as a non-specialist who spends 30 minutes to an hour, using a less successful surgical technique such as ablation or fulguration

 

 

NATALIE

founder


 

Natalie's story is a bit of an unconventional one, but it has all lead led her to where she is today. She began by studying Psychology in Australia (taking breaks to live in London and Los Angeles), and went on to complete her honors in Nutritional Neuroscience. This background in research has equipped Natalie to pick apart research articles related to her Endometriosis treatment and management. While she was studying, she worked in marketing and modeling - very different worlds! Natalie's passion for marketing led to the creation of her own brand consultancy: MisSocial. She uses her background in psychology to understand human behaviour,  and her experience in the fashion industry to best serve her clients.


Even though Natalie grew up on the sunny Australian coast, she is really enjoying living in New York City with her lovely, supportive boyfriend and adorable bunny - Merky. "Life is a bit of an adventure, made harder by my endometriosis and adenomyosis. I struggled for many years with my diagnosis, and have now come to a place where I try not to let it define me"  says Natalie. 

Follow her journey on IG @natalie_archer

 


 

JENNEH

Founder

Jenneh Bockari has been a Registered Nurse for ten years, working in many different specialty areas such as trauma, kidney transplant, oncology, and leukemia/bone marrow transplant. After completing her bachelors degree, she decided to pursue a masters degree in nursing education. It took over 4 years, but Jenneh's medical background gave her the knowledge and skills to navigate how to finally get good care after she was diagnosed with endometriosis. With her love for healthcare, education, and teaching, she felt inspired to use her abilities to help other women understand the disease better.

Jenneh is originally from New Jersey, but has lived in in Los Angeles for the last 7 years. In her free time, she loves running, writing, and spending time with her incredibly supportive fiance, family, and friends. When asked why she felt  so passionately about starting the The Endometriosis Coalition with Natalie, she says "endometriosis is criminally under researched and horribly misunderstood, and I want to be a part of changing that, sooner rather than later."

Follow Jenneh on IG @lifeabove_endo


 
 

Jillian

Board Member

Jillian Schurr is currently a second year law student. The same journey that led her to law school, brought her to The Endometriosis Coalition.  After completing her bachelor’s degree in human biology, she began her career in clinical research while working towards a master’s degree in public health. During her time as an investigator in the public health sector, Jillian was diagnosed with Endometriosis.

Jillian is originally from Michigan, previously lived in Texas and Indiana, but it is now Chicago that she calls home. She enjoys reading, catching up with friends, and spending time with her dog Maddison. Her personality consists of the perfect mixture of persistence and compassion that drives her to help others combat the obstacles they may face, whether it be in the public health or non-profit sector.

Follow Jillian on ig @schurr_jillian


 
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Meghan

director of communications

Meg Connolly has been working as a digital and social media professional for 7 years. Working in the field has given her a true understanding and drive to use social media for awareness of endometriosis and proper treatment.  In fact, the tool that brought Meg to The Endometriosis Coalition and to many of her endo sisters was Instagram.

 

While Meg is from the heart of New York, she currently resides in Miami for the majority of the year. Many call her a young ‘snowbird.’ She enjoys managing her dog’s Instagram account: @CeiliThePuppy, real estate, interior design, and spending time with the people she loves, and hopes to continue inspire women to learn about endometriosis and seek proper treatment.

 

Follow her journey on IG: @MegConnolly


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The Endo Co is so grateful to have the support of many influential people and organizations within the community

 
 
 

501c3 pending