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Dear Daisy Ridley, Thanks for Raising Endometriosis Awareness, But…

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Dear Daisy Ridley,

Thank you for sharing an Instagram post about living with endometriosis. It is wonderful that celebrities, like you, are coming out and raising awareness for the disease. It’s nice to see endometriosis trending on Facebook, for a few hours or maybe even a day, and know that people are reading about this horrible condition.

You coming forward presents an opportunity, an opportunity for people to learn about endometriosis. In your Instagram post, you make a great point to “pay for a specialist,” and that’s huge! As someone who runs an organization that provides support for women with endometriosis, it feels as if, at times, all I do is tell people to see a specialist and get a second opinion.

But in this moment, where the spotlight is on you and you have the opportunity to raise some real awareness about endometriosis — you are missing a major point.

You see, making an appointment with an endometriosis specialist is not that easy. For starters there aren’t many endometriosis specialists out there. Endometropolis, a Facebook group run by Libby Hopton — the director of research and evidence-based medicine at the Vital Health Institute in Los Gatos, CA — has created a map of endometriosis specialists. As of today, there are 138 specialists on that map. That’s 138 specialists for the 176 million women with endometriosis worldwide. Each specialist would have to see about 1.3 million women for each woman to get the care she deserves.

Now, even if each specialist could see 1.3 million women, encouraging women with endometriosis to see a specialist ignores the expensive price tag that comes with seeing a doctor of that caliber. Many specialists, because of the money that goes into building their level of expertise and the cost of treating endometriosis, do not take insurance.

Not everyone has the money to pay thousands of dollars to see a specialist. Every day I hear stories from women in our community who are in debt from years of being passed around from doctor to doctor trying to get a diagnosis. And it only gets more expensive from there. Next comes the costs associated with the hormone treatments and surgeries doctors often prescribe to manage the disease. That doesn’t even factor in the money spent on trying to conceive, as endometriosis is one of the causes of infertility. Unfortunately, in-vitro fertilization is just another thing insurance usually won’t cover.

While there are many specialists who do pro-bono work and provide their patients with financial assistance, not all medical practices can afford to do so. Excision surgery, what specialists perform, cuts out endometrial lesions and is the “gold standard” for treating endometriosis. This type of surgery takes longer and requires more skill to perform than what non-specialists typically perform — ablation surgery. Ablation procedures just laser the top of the lesions, and are less successful in treating the disease. Unfortunately, there is no incentive for specialists to take insurance, since insurance companies reimburse doctors the same for excision surgery as they do ablation.

Ms. Ridley, I know you recognize the importance of seeing a specialist, but insurance companies do not. Without insurance coverage, hundreds of thousands of patients will continue to go without proper care. For my last surgery in 2015, I had to ask my family for assistance so I could afford to see a specialist. I’m a preschool teacher and already pay out of pocket for various treatments each month.

No one in the endometriosis community should have to suffer or spend years seeing unskilled or unknowledgable doctors. It took me 10 years to get a diagnosis and another 10 years before I was finally able to seek out the help of a specialist. That is 20 years I will never get back, and my story is not unique among those in our community. We shouldn’t have to live in chronic pain, unable to be intimate with our partners, care for our children and go to work.

We — doctors, patients, lawmakers, media — need to have a conversation. We need big voices, like those of celebrities, to hear our patient communities and help our voices be heard — in Washington and around the globe. We need people to stand up and say “this isn’t fair.”

Thank you, Daisy Ridley, for starting the conversation. You are right, we do need specialists to treat us. Now we need insurance companies to realize this necessity and help patients afford proper care.


Jill Fuersich

Follow this journey on Endo Warriors.

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Originally published: June 10, 2016
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