endometriosis

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The Unrecognized Pain Of Endometriosis

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)

(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, Continue reading

New Endometriosis Center Launches With $3M From Marriott Foundation

After 14-year-old Emily Hatch of Wellesley was treated for endometriosis at Boston Children’s Hospital, her mother, Mary Alice, asked the surgeon what she could do to help researchers find better treatments and ultimately discover a cure for the painful, chronic disorder.

That conversation led to a gift of $3 million from the foundation started by Mary Alice’s grandfather, J. Willard Marriott, to launch the first-of-its-kind Boston Center for Endometriosis, “a joint undertaking to discover causes, promote prevention, and develop new treatments and cures for the disease of endometriosis,” according to an announcement to be released today by Boston Children’s Hospital.

The Center will be the first in the world to both conduct research and treat endometriosis in women of all ages, from adolescence — when the disease often begins — through adulthood, according to Children’s Hospital. The Center will include a unique repository to collect urine, saliva, tissue and blood from patients in order to research potential biomarkers and non-surgical diagnostics, to find new treatments, and eventually a cure.

Emily Hatch saw seven specialists and underwent numerous invasive tests over 18 months to try to figure out what was causing her terrible abdominal pain before she was finally diagnosed and treated at Children’s. Read her full story on CommonHealth here.

More than 6 million women in the U.S. suffer from endometriosis, which occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body. The resulting implants or lesions can be extremely painful and if left untreated, the condition can cause infertility. Continue reading

Secret Suffering: Teens With Endometriosis And Years Of Baffling Pain

Emily Hatch and her mother, Mary Alice Hatch

Emily Hatch and her mother, Mary Alice Hatch

For Emily Hatch, the pain started during a Taylor Swift concert in the spring of 2010.

During the very first song — “You Belong To Me” — and without any warning, Emily, then 13 years old, felt a stabbing pain below her belly-button unlike anything she had ever experienced. She clutched her stomach and doubled over, but that didn’t help. Before the song ended, she was rushed by wheelchair to an infirmary at the Boston stadium and her father was summoned to drive her home. “The pain was so bad I couldn’t stand up,” Emily recalled. “It was so sad because I’d been looking forward to the concert all year.”

That was the start of a medical odyssey in which the teenager from Wellesley saw seven specialists, underwent numerous invasive tests including a colonoscopy and endoscopy, and endured countless needles and scans of her body. Despite all that, her mother says, her underlying diagnosis eluded top experts at three major hospitals. At least one doctor told Emily she’d just have to live with the terrible pain. And while she was shuttling between doctors and missing school, Emily tried to keep her condition a secret, not telling friends because, well, she’s a typical teenager. “I just didn’t want to feel different,” she said.

Finally, after 18 months without a firm diagnosis, Emily and her mother, Mary Alice Hatch, found a doctor in Boston who was able to treat her.

In October, at age 14, Emily underwent surgery at Children’s Hospital Boston and only then learned she had Stage II endometriosis. Emily’s surgeon found significant red and white lesions in her pelvic cavity; her left ovary had effectively become fused to her pelvis. Today, she is still not entirely pain-free, but at least she knows what the problem is.

A Painful Secret

Endometriosis is often perceived to be a disease of adulthood. Years ago it was cast pejoratively as “a career woman’s” condition that mostly hit older women who had delayed child-bearing. But in fact, endometriosis frequently begins in adolescence. It can be passed genetically from mothers to their daughters; there is no cure.

Endometriosis occurs when cells that normally grow in the lining of the uterus (endometrial cells) start growing in other parts of the body: the abdominal cavity, ovaries, fallopian tubes, bowel, bladder or the area between the vagina and rectum, for instance. Continue reading