What 5 Endometriosis Activists Want the Medical Community to Know

Despite the fact that endometriosis affects over 200 million women worldwide and topped Google’s most searched health terms in 2018, there is still much mystery and misinformation surrounding the disease. What is it about this painful, chronic illness that alludes the general public and medical community alike? With no known cure or breakthroughs in discovering its origin, many endo sufferers would agree that we have a long way to go before there is legitimate treatment and care available.

Recent public service announcements and paid advertising by pharmaceutical companies have focused their efforts on promoting a woman’s right and need to speak up about painful periods. We have learned that excruciating cramps, heavy bleeding, and chronic fatigue during menstruation is not just a normal part of being a woman but instead, warning signs that something could be amiss. One of the most complex (and head scratching) problems is that there is no way to detect or diagnose endometriosis without surgery. On average, it takes ten years to receive an accurate diagnosis and most women with the disease have reported that they were misdiagnosed not once but multiple times, with multiple illnesses, throughout these years of pain, confusion and trauma. It isn’t so much that women aren’t speaking, but rather, they aren’t being heard.

What’s the difference between excision and ablation surgery? How much funding is allocated to the disease? What are the biggest misconceptions and what can we do to better understand endometriosis and advocate for our bodies? Someone has the answer to these questions and the information is not coming from most doctor’s offices. Instead, endometriosis warriors have turned to social media to raise awareness, lend support to other women, dispel myths, and demand more answers, education and research.

SheKnows asked five of these change makers what they want the medical community to know and understand about their condition and the state of women’s healthcare worldwide. These individuals speak from their own experiences and stories they’ve heard from thousands of women following their online communities. In these spaces, endometriosis has reached a #TimesUp moment. With strength growing in numbers as endometriosis sufferers band together demanding a better quality of care living with this lifelong illness, these inspiring endo activists are making strong ripples by devoting their time, personal stories and photos not just to each other but to the general public, asking us to do better. And with 1 out of 10 women affected by the disease, it’s about time we listened.

endo activist: wendy england
Image: Courtesy Wendy England, Keep Calm and Vector/Shutterstock. Design: Ashleigh Morley/SheKnows.

What I want the medical community to know:

“I want the medical community to know that women like myself are not just suffering from endometriosis pain, but from trauma stemming from years of being told ‘it’s all in our heads.’ [We’re suffering from] the endless painful examinations where we are told we are [being] ‘too sensitive,’ and [from] all the surgeries we’ve endured without offering counseling.

With endometriosis, my whole life has changed. I can’t be intimate with my own partner because of what I’ve lived through. There is no care for the emotional impact of this disease and the experiences that I, and the women in my @endoeducation community, go through. It makes me angry! I don’t want any young woman to have to go through this.

There is no cure for endometriosis, and that alone is terrifying, but to have to overcome the lack of empathy from medical professionals is just heartbreaking. Can we please get more support for our mental health?”

On being an endo activist:

“I set up @endoeducation after a hysterectomy complication left me living with a catheter for seven months. At age 32, after 16 years of asking for help [with my pain], I was diagnosed with Stage 4 endometriosis and adenomyosis. I desperately wanted to reach out to other women living through the same painful experience. I post regularly so these women feel less alone and are heard.”

endometriosis activist shelley hopper
Image: Courtesy Shelley Hopper, Keep Calm and Vector/Shutterstock. Design: Ashleigh Morley/SheKnows.

What I want the medical community to know:

“I wish society would realize how draining it is to live with a chronic condition that has no known cause, no standard treatment and no cure. Endo causes chronic fatigue, extreme pelvic pain, bloating, food intolerances, painful sex, hormone imbalances, painful, heavy periods, painful bowel movements and/or urinary issues, infertility, nausea, diarrhea and overall body pain.

There needs to be funding allocated for specific endometriosis research: what the cause is, how a woman can be diagnosed without surgery and what treatment options can be made available to women that are an actual cure rather than a Band-aid.

Currently, the gold standard treatment for endometriosis is laparoscopic excision surgery, yet many doctors are insufficiently trained and burn endo adhesions and lesions (ablation), rather than cutting them out. With ablation surgery [instead of laparoscopic excision surgery], endometriosis and chronic pain will never improve.

After spending two years in and out of the ER and multiple specialist’s offices undergoing what felt like thousands of ultrasounds, CT scans, MRIs, GI testing (endoscopy and colonoscopy) and being dismissed by both my primary doctor and OB-GYN, I spoke up and demanded surgery so they could open me up to see what was going on inside me. The chronic pain I was having was in no way ‘normal’ as implied to me by some of the doctors I saw. I was diagnosed with endometriosis after a laparoscopy but experienced no pain relief. I continued to go through testing for another year when I finally had excision surgery and found some relief.”

On being an endo activist:

“Now I speak up on @SpeakUpSpeakEndo to help others get answers and not go through the diagnosis rollercoaster I had to. I created the account as a communal space for others to share their stories and feel less alone. I’m also working on Endoboxes, a monthly subscription box containing items that help women with endometriosis during a flare.”

endometriosis activist cori smith
Image: Courtesy Cori Smith, Keep Calm and Vector/Shutterstock. Design: Ashleigh Morley/SheKnows.

What I want the medical community to know:

To start, we have to stop referring to endometriosis as a ‘female disease.’ Language used to describe the disease plays a huge role in access to healthcare and excludes millions of men, non-binary and intersex individuals who also live with and fight endo. Stigmas, ‘opinionated’ doctors and discrimination all further complicate treatment. Referring to endometriosis as reproductive healthcare is more fitting and doesn’t allude to one gender or another — as it shouldn’t. Endo isn’t about periods, nor is it about cramps; the pain can be worse than giving birth and the disease impacts almost every aspect of one’s life. The fatigue alone is debilitating. It is a whole body disease, acting much like a cancer which invades and melds together cells, nerves, muscles and organs and has an inherent emotional toll and trauma. That’s why we call ourselves warriors. Every day we wake up, we go to war never really feeling better. We create much of our own hope within our community.

The sooner endometriosis can be diagnosed, the better the outcome will be. Instead [of receiving early diagnosis], endo patients wade through unanswered questions, multiple ineffective surgeries, infertility and the financial burden, which usually falls on the patient’s shoulders. Rather than it being a team effort between the medical community and endo warriors, it feels like it’s us versus them. Together, we could excise the disease, removing its root early on, and work towards effective treatments and cures and cease pushing hysterectomies or chemically-induced menopause. Respect our pain and take it seriously! Respect our decisions, our physical boundaries, our limitations. Support us and our choices.

I hope to see a future where endometriosis is as recognized as cancer, and is a part of everyone’s vocabulary. There is no excuse for a doctor to not know what endometriosis is or [to know and recommend] the best path for treatment. I also hope for easier ways to receive disability, legal help if needed, and for excision to be the surgery offered and covered under insurance! Our lives should be more important than money.”

On being an endo activist:

“It doesn’t hurt to help make someone’s life easier. I am a public speaker focusing on trans and LGBQ+ rights, diversity and inclusion and endometriosis. I speak to future educators on panels and at events, summits and conferences held colleges and universities. My activism also includes a lawsuit in which I am representing myself. I was discriminated against for being trans, denied proper medical care in a hospital, sexually assaulted, and forced to undergo unnecessary procedures — despite being diagnosed with PCOS and ovarian torsion. It was dismissed, so I appealed and it is now in the Second Circuit Court of Appeals in New York City. I created @thisiswhatendolookslike to advocate that anyone can have endo and it’s not always what you think it looks like.”

endometriosis activist kellie niebling
Image: Courtesy Kellie Niebling, Keep Calm and Vector/Shutterstock. Design: Ashleigh Morley/SheKnows.

What I want the medical community to know:

“Endometriosis is excruciating, devastating, exhausting and it sometimes feels impossible to accept that we could be in pain at some point every day for the rest of our lives. We need family, friends, partners and health professionals on our side who believe and support us on the days we can’t see past the pain, rather than accusing us of being oversharers, exaggerators, or dismissing our symptoms as ‘all in our heads.’

It’s so empowering to see more and more women speaking out about endo and other reproductive health issues because the more we talk about it, the better the chance we have at educating others and raising awareness. Like so many young women, I suffered for almost ten years before I even heard the word ‘endometriosis.’ By being an advocate, I hope to help young girls around the world who may be suffering to know that it is not normal for women to be in pain and that they don’t just need to ‘toughen up and get used to it’ like so many of us have been told to do.”

On being an endo activist:

“After falling into a dark hole thinking nobody understood what it’s like to live with endometriosis, I started an Instagram account in the hope of finding someone who actually did. Thankfully, I discovered an entire family of endo sisters and my world went from complete loneliness to advocating loud and proud alongside my fellow warriors. I hope that through real talk — and showing the raw side of what it’s truly like to live with this disease — that @thatendogoddess will contribute to much-needed awareness and shine some recognition onto those who have to live with this disease every day. Too many women feel they need to suffer in silence because of the stigma that still surrounds women’s reproductive health. We go through days of pure hell — not just physically, but mentally —because of the lack of education which leads to ‘treatment plans’ such as getting a hysterectomy. It is unacceptable.”

endometriosis activist adelie landis
Image: Courtesy Adelie Landis, Keep Calm and Vector/Shutterstock. Design: Ashleigh Morley/SheKnows.

What I want the medical community to know:

My advocacy began the day I realized the surgery I had in southwest Florida wasn’t the surgery I should have had to give me a good shot at pain relief. I had a laparoscopic surgery by an OB-GYN in Fort Myers who burned the endometriosis with a fulguration laser. This pushed the disease further down into my tissues and created deeply infiltrated endometriosis. He also left endometriosis inside my left ovary even though it was enlarged. It was an eye opener for me. I realized I can’t trust doctors and neither can my fellow endo warriors, so I created a community for women suffering from endometriosis. [I wanted to] help them not have to experience the trauma, disappointment, betrayal and medical bills that I did. Endo Support SWFL is on a mission to improve the quality of care in Southwest Florida by educating the healthcare system, my community and high school students about the signs and symptoms of endometriosis.

One of the problems is that patients [aren’t referred] to doctors experienced in endometriosis surgery. Ablation is the incorrect term for burning endometriosis out of the pelvic area. Ablation is actually the proper term for the cauterization of a woman’s uterus, an alternate hysterectomy and is different than what everyone refers to as ‘ablation.’ Burning endometriosis out is just fighting inflammation with inflammation and causes more issues. Excision actually pulls endometriosis from the roots. This is the best way to remove as much disease as possible. Having an expert perform excision surgery also means they can deal with complicated presence of endometriosis such as DIE (deeply infiltrated endometriosis), endometriomas blocking fallopian tubes, endometriosis growing on bowels [and more].”

On being an endo activist:

“My organization, @endofoundswfl is new but we are working on getting into the school system to educate young women about endometriosis. In the near future, we will present facts to local healthcare conglomerates to improve their treatments. Almost daily, I am in contact with girls who are in need of information or just someone who understands them.”

These interviews have been edited for length and clarity. These quotes represent the opinions and personal testimonies directly from the individuals. 

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