This forum topic is created for members to share some of the most outlandish or unbelievable things their healthcare providers have told them about endometriosis. Participants are welcome to recount experiences where they received misinformation, insensitive comments, or dismissive attitudes regarding their endometriosis diagnosis or symptoms. By sharing these stories, we aim to shed light on the lack of understanding and awareness surrounding endometriosis within the medical community, as well as debunk any myths or misconceptions that may perpetuate harmful beliefs. Through this discussion, we can support each other, provide validation, and advocate for better education and communication between patients and healthcare providers. Let’s come together to share our experiences, empower one another, and challenge the stereotypes and stigmas associated with endometriosis.
Like many of you, I have countless stories of times medical providers dismissed my pain and concerns. While I’ve had all kind of harmful things said to me by providers, I believe a simple statement from a gastroenterologist stands out the most. You see, I couldn’t use the bathroom, and on the occasions I did, I quite LITERALLY thought I was going to die. When things moved around, the pain was BIZARRE. A colonoscopy found an “extreme tortuous colon” to which the provider told me they couldn’t get the scope past and had to turn my body a different way and use a pediatric scope. Even though I had lost my ability to use the bathroom, had extreme pain, a tortuous colon, AND KNOWN DIAGNOSED ENDO, this gastroenterologist told me there was nothing wrong and prescribed me continual MiraLax. When I asked could all of these symptoms be related to my endometriosis I was told no, there was no way. I knew my endo was the cause. 5 months later I had a Laproscopy where…YOU GUESSED IT. Endometriosis was found on my colon and rectum. Since the excision, I am able to use the bathroom now, and without pain.
Hello HannahH! Welcome to Worthy Warrior. Thank you for sharing your story with our community.
I so understand that one all too well. I am on continual MiraLax as well. I asked those same questions and was also told the same. 
I also had a doctor who told me I should meditate. That the pain I was feeling was “ghost pain.” I NEVER went back to him again. It is unbelievable that we are still hearing these ridiculous responses from doctors.
It’s so wild what drs think is ok to say!! One told me I don’t want to get better and I’m holding onto trauma in my body instead of letting go. Because I was afraid of the future apparently! They also said my gyno wouldn’t find anything in surgery. They were shocked when I told them where my lesions were post surgery. Never went back to them again!