Women Are Speaking Endo: but who’s actually listening?

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Senator Warren, first and foremost— THANK YOU! I cannot even begin to tell you how much this tweet means to me. I am a disability advocate and expert, who is now 30 but at age 21 was diagnosed with Endometriosis and other co-occurring chronic illnesses.  However, I started exhibiting symptoms years earlier.

Here’s the landscape of endo care in America. Endometriosis is more painful than child birth, and yet EVERY SINGLE WOMAN diagnosed has been told multiple times it’s all in their heads. It takes years to find an actually qualified surgeon, and the treatment options are archaic. Female diseases are stigmatized at such a higher rate than diseases that primarily affect men because women who report symptoms are seen as people who are exaggerating, irrational, and emotional instead of reasonable individuals showing clear evidence of disease. Delays in diagnosis caused serious damage to my internal organs and body systems. It’s not painful periods. It’s pain allll month long. It’s nausea every day of my life. It’s the detrimental cells that form and in time create damage and scar tissue that binds my internal body parts together and simple physical movements cause them to tear apart and create more damage. It’s the children I may not be able to conceive because endo is the leading cause of infertility. It’s wasting many days, nights, and money in traveling to specialists for surgery and checkups and paying thousands of dollars for treatment of symptoms because researchers don’t care to find a cure.

You may have lately seen commercials saying #SpeakENDO or that encourage speaking up about endo. They show women at the doctor and they are hesitant to share just how awful their symptoms are. The doctor is asking, “how has your pain been?” and the woman is down-playing it. This commercial INFURIATES me. Women ARE telling their doctors of their symptoms, over and over and over again. Doctors are the ones who aren’t listening. Doctors are the ones down-playing it, saying it’s all in our heads. Doctors aren’t asking us those questions. And as we get sicker and sicker they act like we’re getting crazier and crazier. Doctors are spewing myths about how a hysterectomy or getting pregnant will cure endo when there is no cure. Doctors are saying that because an ultrasound or a CT scan doesn’t show anything, endo isn’t present—when endo can ONLY be diagnosed through a surgical laparoscopy.

The truth is that women ARE speaking up. I’d love to see a campaign or commercial that shows just how women are really treated when they speak up. They are more than ignored—they are treated like drug-seeking scum. This is what endo is.

I’m eternally grateful that someone in politics is showing care and compassion, and I pray this commitment to finding real options and de-stigmatizing endo continues past this tweet. As a future attorney (I finish law school in less than a month 💛) I would love to see women with chronic illness receive the proper care and legal attention required when this disease becomes debilitating, tough preferably before that. I’d love to see reform in the medical field as to how this disease and other diseases are taught. I’d love to see policy changes and licensing consequences that are correlated to the mistreatment of female patients. I commit myself to making a positive change and being an unwavering advocate. Senator Warren, I hope you do too. Thank you for your tweet. Thank you for bringing awareness. The endo community is grateful.

Thanks to @drsalliept for bringing this tweet to my attention and as always, thanks to @endowhat for being a persistent agent of change in the endo world 💛

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