The Unrecognized Pain Of Endometriosis

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I was so moved by this interview with the extraordinary writer Hilary Mantel, particularly as she discussed her lifelong battle with endometriosis and the toll the condition has taken on her body and her life.

The author Hilary Mantel speaks openly about her struggle with endometriosis. (Photo: Chris Boland/flickr)
The author Hilary Mantel speaks openly about her struggle with endometriosis. (Photo: Chris Boland/flickr)

(It's a condition that often strikes teenage girls who frequently are too shy or embarrassed to speak out about their pain, and so the illness can remain undiagnosed for years.)

Mantel tells Terry Gross that even as she suffered with the pain, doctors told her "it was all in my mind."

Here's an excerpt:

"Endometriosis is a condition in which the special cells that line the womb — they are the endometrium — they should be in your womb, but in endometriosis these special cells are found in other parts of the body, typically through the pelvis, but they can be anywhere in the body. And the problem there is, they bleed each month, just as the lining of the womb does, then they scar over, and depending on how much space there is around the scar tissue, you can have terrific pain, disability. It's a disease that throws up a variety of symptoms, including nausea. It's not easy to diagnose because depending where the endometrial deposits are, the symptoms can be quite different. It's an unrecognized problem among teenage girls, and it's something that every young woman who has painful menstruation should be aware of ... it's a condition that is curable if it's caught early. If not, if it's allowed to run on, it can cause infertility, and it can really mess up your life.

"I suffered from it, I think since I was 11 years old. It wasn't diagnosed; I kept getting sent away and told that it was all in my mind. When I was 27, the whole thing came to a crisis,

and I had surgery, big surgery. I lost my fertility. I didn't have any children; I don't know whether I would have been able to have children. Unfortunately, that surgery didn't cure the condition. It came back, and I lived with it for the next 20 years. It's now died back, it's quiescent, but it's done a lot of damage to my body."

(Photo by Chris Boland)

This program aired on November 27, 2012. The audio for this program is not available.

Rachel Zimmerman Twitter Health Reporter
Rachel Zimmerman previously reported on health and the intersection of health and business for Bostonomix.