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Advocacy for Endometriosis is Advocacy for Women’s Health

Guest post by Arolyn, Worldwide EndoMarch Intern

Hello there! My name is Arolyn. I am an intern with Worldwide Endomarch as an MPH graduating candidate for the past six months. Throughout my time here, I was able to communicate and listen to endometriosis patients sharing their struggles with an intense and chronic condition. Additionally, I was working on a project focusing on advocacy for patients with endometriosis. With this project, I have been able to witness and experience from the perspective of, and as an endometriosis patient, which includes the hardships to seek care. 

One of the main objectives of the advocacy project was to spread awareness and educate women on endometriosis. This particular project creates an advocating community of women who volunteer their time to speak to their local politicians about the need for a change in women’s health. These women are willing to share their truth and reality being an endometriosis patient. They are not afraid to discuss the lack of financial and medical support for women who suffer from such conditions.  

A particular conversation truly resonated with me with a Worldwide Endomarch patient advocate. We discussed a recent emergency appointment she attended at a local reproductive clinic. She had made the appointment because her primary OBGYN was not available for weeks to tend to her care. This could have been the fact that she lived in a heavily populated area. The reason why she needed to see her doctor was that her body was no longer reacting to her birth control as effectively as necessary. She shared that this had happened before and endometriosis symptoms intensify immediately if she does not see a doctor. She also believed she may have had an infection as well and wanted confirmation with a medical professional.

In addition to reaching out to a reproductive clinic, there were a lot of uncertain risks that she took. Being a diagnosed endometriosis patient, she was unable to see a doctor that she not only trusted but knows her medical history. She was nervous about finding someone that knows her and her body on quick notice. She said she felt lucky for even getting an appointment at a reproductive clinic because of the sudden onset of symptoms. Upon the arrival of her appointment, she waited over three and a half hours to be seen by a medical professional. The environment felt discouraging as well because of the wait. She felt so lucky to be seen but was alarmed that this was common for all parties to seek proper reproductive health care, most specifically for women.

She believed that, aside from her endometriosis diagnosis, waiting for an extended amount of time to be seen by a medical professional should never be the case. She also thought what if I could not afford the medical case she needed and why was it so hard to find immediate reproductive help. Could there even be other options to seek care other than attending urgent care or the emergency room? And lastly, if reproductive women’s health is crucial, so why does seeking women’s health reflect such a negative connotation?

All her questions are valid. I am confident they cross every woman’s mind, especially when living with a chronic health condition like endometriosis. Women around the world will continue to advocate for more health care coverage and better treatment options. I personally have  experienced the negative attributes myself waiting to be seen by a doctor. We have to continue educating women of all ages about reproductive health. Most importantly, We have to share our real and raw stories with others about a need for change within our own health care system so that no woman is neglected of the deserved care. Women should never be turned away because of their insurance, or should have to seek medical treatment elsewhere that may be crucial to their own health because they could not financially afford it. Additionally, insurances must provide coverage for preventative health measures and focus on improving the quality of life for all women who may have differing reproductive conditions. How is it fair for women who seek a better quality of life because of the endometriosis pain and build considerable debt due to procedures, when there are no preventative measures to take before a diagnosis?

Advocating for endometriosis is advocating for women’s health. The healthcare system must become more knowledgeable and aware of chronic conditions by providing more coverage for individuals that suffer these conditions. They should provide resources to medical professionals who specialize in differing conditions to those patients who may need more additional care and support.

Will we ever see a day with complete coverage for reproductive needs and where women feel satisfied with their treatments? Possibly. We have to keep talking, we have to keep educating, we have to keep advocating for a healthcare system change, and we will.