A Hysterectomy will not cure Endo.

At an annual dermatology visit, the Dermatologist asked me about the six visible scars on my ribs and chest. I told her that I have Endometriosis, and it caused my lung to collapse 3 times in one year, so I needed to have two lung surgeries, and many scars.

Like most people, she did not know that Endometriosis can cause a lung to collapse. I wasn’t braced to be the informant on this day, I actually just figured we would talk about my skin.

But then the Dermatologist dropped a bomb: “Did you consider getting a Hysterectomy?” she asked.

I was caught off guard, and so my instinct was to laugh. I sort of laughed and said, “Yes I did. But Endo is just so hard to locate and remove.”

That’s a very poor answer for a very gnarly question.

True, it is difficult to locate and remove Endo. But about that Hysterectomy: removing my uterus wouldn’t have stopped my lung from collapsing. Why? Because Endometriosis is endometrial-LIKE tissue found outside the uterus, and contrary to the myth, it doesn’t originate from the uterus.

Stopping my menstrual cycle by removing my uterus wouldn’t impact the Endo growths found on my diaphragm and on several other organs in my pelvic area.

People born with a uterus — who suffer from Endometriosis — sometimes do have their uterus removed as a possible treatment. But even after a Hysterectomy, many continue to have ongoing symptoms, pain and suffering, while the disease progresses. Not to mention, removing a major organ like the uterus will have a ripple effect on the body’s entire system.

Endo patients sometimes don’t have a uterus, and sometimes they don’t have periods. The entire understanding of this disease seems to be a very big misunderstanding, universally.

We need to talk about Endo and what it actually is. The conversations between physicians and patients need to happen, and the physicians need to be open to learning new information from their patients.

At this same appointment, I also shared with the dermatologist that family history of Melanoma has been linked to increased risk for Endometriosis. She had never heard of that, either. “Our journals say nothing about that,” she said to me.

Regardless, a study published by the NIH that affirms the link to Melanoma. I am emailing the study to the Dermatologist for her careful consideration: https://pubmed.ncbi.nlm.nih.gov/24343850/

This is not the first time I will be sharing new information with an expert, and it’s a behavior that a patient-led advocacy movement is normalizing. I’m also not seeking to-be-right, but I hope the Endo-community can be better understood. The misinformation and ignorance can cost lives, and we can spare the uteruses around the world from premature demise.