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ebb&flo

open letter 

ebb&flo

At age 9, I experienced my first menstrual cycle and endometriosis symptoms. Despite seeking medical treatment and support, over the next 17 years, I was frequently accused of seeking attention and misdiagnosed with various conditions like bipolar disorder, depression, anxiety, polycystic ovary syndrome, pelvic inflammatory disease, and sexually transmitted diseases. I was prescribed various forms of narcotics, antibiotics, birth controls and suggested treatments such as pregnancy and hysterectomy, while being made to believe that to be in pain is to be a woman. It wasn't until I had a miscarriage and an anembryonic pregnancy at age 25 that I was finally properly diagnosed with endometriosis and adenomyosis.

At age 26, I was informed by my doctor that my only remaining treatment options were a hysterectomy or induced chemical menopause. I decided to undergo weekly 3 hour ketamine infusion therapy and menopause, later hospitalized for a deep vein thrombosis (DVT). My doctor, who is a top endometriosis specialist in North America, accused me and the hospital staff of lying about my DVT, put me on indefinite blood thinners, and ignored my calls and emails when dismissing me from his care.

At age 26, I also experienced my first medieval procedure; cervical conization. Cut by arts-and-crafts looking scissors, without any anesthesia or numbing for abnormal cells. I was told I needed conization procedures on a yearly basis for the next five years because of how bad it was. After experiencing six months of bleeding, I begged my gyno for help, but they denied me care because I denied getting another conization at the same time, insisting I urgently needed too, while also ignoring my requests for my biopsy results. I switched my care and received my reports indicating that there was nothing wrong with my cervix.

At age 27, I was diagnosed with ADD and prescribed amphetamines. I experienced temporary blindness, paralysis, onset stuttering, and collapsing. When I sought medical attention at the ER, I was dismissed as having anxiety and depression and told to continue taking the ADD medication. My symptoms worsened over time and my doctor began an investigation for multiple sclerosis while insisting prescriptions (SSRI's) for ADD and depression. Several different medical opinions later, it was considered I was suffering from serotonin syndrome; being poisoned by the amphetamines. 

No one believed me. That is why I took a video every day for 730 days, and continue too. This is the fight of my life and in some capacity, we all are in the fight of our lives living with endometriosis. For some- a fight for the lives we use to have, for others- a fight for the lives we never had and for all of us- a fight for the lives we deserve to have.

The lack of care and urgency for women and people AFAB's healthcare, especially for womxn of colour, demands urgent and immediate change. I can’t express to you the overwhelming pain in my heart I feel for all of us but I can show you the abundance of love I have for all of us through ebb&flos' innovations for the care paradigm that is rooted in the care we deserve.

Please join me this year in re-introducing endometriosis as a full body chronic inflammatory disease with autoimmune like behaviours impacting 1 in 9 women, transgender and non-binary people; people AFAB. 

Join me in shouting from every rooftop, making endometriosis the most discussed topic of the year because we are relentless in our voices being heard, our stories being shared and our care turned into one we deserve.

It’s time.


With love, determination, strength and healing,
Kelly

alliance

about

Overview

Endometriosis is a common and often life-altering, chronic inflammatory disease  affecting 1 in 9 people undiscriminating of age, identity or ethnicity. Endometriosis is greatly under-funded and under-researched. Endometriosis causes substantial adverse health and psychosocial consequences from chronic pain, abnormal menstrual cycles, sexual intercourse, bowel movements and/or urination, abdominal bloating, fatigue, nausea, depression and infertility. With patients commonly prescribed incorrect and archaic treatments like prostate cancer medications and unnecessary, preventable organ removals.

We are currently expanding our endometriosis alliance with the help and support from leaders like you, international advocates, patients, practitioners, researchers and lawmakers dedicated to advocacy and awareness and to also contribute their expertise and insights towards the development of updated education and regulatory guidelines for endometriosis education, research and care.

We believe that by working together, we can create a new standard of care that will make a lasting difference in the lives of those with endometriosis - impacting hundreds of millions of people.

Campaign 

Our endometriosis awareness campaign,
moments of internal hell | a misdiagnosis memoir, aims to fundraise, educate the public and advocate for better care guidelines and treatments through an international art installation featuring the experiences of endometriosis patients living with this disease in the current care structure driven by neglect and misdiagnosis. 

 

Intention

By raising awareness about endometriosis and advocating for better care guidelines and treatments, we intend to make a significant impact on the lives of endometriosis patients. Our campaign will help educate the public about the realities of living with endometriosis and the need for better care, empowering patients to advocate for themselves and demand better treatment. By supporting research into endometriosis, we hope to find new and more effective ways to manage the disease, and continuing the development towards a cure.

Our campaign aims to empower endometriosis patients and improve the current systems that continue to fail too many. Many people with endometriosis suffer in silence due to a lack of understanding or awareness about endometriosis. If our campaign can help just one person who is experiencing symptoms of endometriosis but has not been diagnosed or is unaware of this disease, it will have a significant impact on their life and be a step towards a world where endometriosis is properly understood, respected, and treated with the care it deserves.

Together, we can create a brighter future for endometriosis patients everywhere.

Let's change endometriosis care together. Join our alliance.

Get in the Know

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Diagnostics and Racial Bias

Endometriosis, one of the most common chronic inflammatory diseases yet takes an average 11+ year diagnostic wait time and 3+ year specialist wait time. Longer for women of colour, transgender and non-binary people.​ 

Teens wait 3x longer than other groups to report symptoms, due to embarrassment, fear of repercussions and cultural/familial differences.

Endometriosis is the most common cause of secondary dysmenorrhea in teens, with 40% of patients aged 19 years or less having had symptoms with pain.


50% of Hispanic and Black womxn are less likely to be diagnosed with endometriosis due to racial bias, the gender and pain gap.


The first endometriosis analysis for transgender people was only published in November 2021.

The first demographic and clinical profile of women with endometriosis of Hispanic/Latina background was only published May 2020.

There are few studies and higher complication rates for endometriosis and surgical care amongst Hispanic, Black or African American, Native Hawaiian or Pacific Islander, and American Indian or Alaska Native patients

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Treatments

There are 40,000 obygns in America and only 100 endometriosis excision specialists to the 8M women and people AFAB that suffer from endometriosis. 

Due to the lack of education amongst practitioners, mistreatments like opioids, NSAID's, birth control, chemically induced menopause, preventable hysterectomies and even childbirth are suggested as medical solutions. These often lead to long-term internal irreparable damages, infertility, loss of productivity, addiction, overdose, suicide.

Oral contraceptives are the most common prescribed to teens and young adults, however, limited clinical trial evidence supports the effectiveness of OCs in treating endometriosis-associated pain and often leads to infertility and loss of bone density.

Organ Removal

The standards for diagnosing is a hysterectomy, a high-cost invasive procedure, a laparoscopy, or a clinical diagnosis with no ongoing support.

100,000 hysterectomies
(removal of reproductive organs) are done yearly as a primary diagnostic method for endometriosis.

 

10,000 of those are women and people assigned female at birth (AFAB) who are 25-29 year olds. Most of these patients are made to be believed that a hysterectomy is the solution to their suffering.

Endometriosis can not be seen on x-rays, CT or MRI scans, ultrasounds, bloodwork and often missed in surgical investigations
and procedures. Endometriosis has no known cause or cure.

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Education and Support 

90% of people with endometriosis report being dismissed by

doctors and family.

75% of endometriosis patients report being misdiagnosed
with

another physical or mental health condition.

90% would have liked access to psychological support, but they
were not offered it.

50% of endometriosis patients contemplate suicide

72% were not given any written information when diagnosed,

leaving them without the knowledge and advice they need to make informed choices about their healthcare.

79% of teens “feel that they need more in-depth menstrual education."

Endometriosis is the leading pathologic cause of dysmenorrhea and chronic pelvic pain among adolescents. Is the leading cause of recurrent school absenteeism and academic performance.

 

Community Updates

ebb&flo

Let's change endometriosis care together. Join our alliance.

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