Pain Symptoms

Endometriosis Symptoms, Pain, and Treatment

"The first time I ever went to the ER with terrible abdominal pain, I was 14, and my doctors thought I had appendicitis, " television journalist and former CNN correspondent Lizzie O’Leary told "It would later turn out, when I had surgery at 35, that I had endometriosis."

It took 21 years for Lizzie, now 37, to finally be diagnosed with the gynecological condition, in which the endometrial cells that grow in the uterus (and are shed during periods) develop in other areas like the bladder or ovaries, causing chronic pain, internal bleeding, and, often, infertility. (Symptoms are wide-ranging, from severe abdominal pain to inability to get pregnant.)

Unfortunately, Lizzie’s long road to diagnosis isn’t rare. A staggering 176 million women around the world suffer from endometriosis, but according to the Endometriosis Foundation of America, "most" women affected by the condition battle symptoms for up to a full decade before getting diagnosed.

"I asked my gynecologist for 10 years: 'Do I have endometriosis?'" Lizzie recalled. "I was told, "No, no, no, no. You’re young. You’re fine.' A lot of damage was done to my body in that time."

From her teens to her early 30's, Lizzie battled nausea, abdominal pain, diarrhea, constipation, and exhaustion. She popped handfuls of Advil for period cramps... but then the symptoms would "sort of go away." After logging a half-dozen hospital visits, (doctors' misdiagnoses included ovarian cysts and hernia), Lizzie prepped for a 90-minute appendectomy in 2011, and woke up almost six hours later with no appendix and five inches of her intestines removed.

A surgeon had traced internal bleeding to large legions of endometrosis in her appendix and intestines, and flecks of endo in her abdominal cavity. ("I have a picture of the surgeon holding my intestine and it looks like a grape is blocking it, " Lizzie adds.)

"I just thought, 'If only you people had listened to me for the last 20 years, '" Lizzie said. "For so long people have thought about endo as a fertility problem that affects women in their 30's, but there are tons of young women suffering through pain and no one is listening to them."

Post-surgery, she found a new gynecologist and promptly began taking hormones to stop her period and "trick" her body into containing the flow of estrogen that feeds her endometriosis. Concerned about "fertility stuff, " she froze her eggs, (calling it "the best decision I ever made, " and quipping, "I'm kind of an evangelist for it now.")

"I figured if he couldn't handle that I was freezing my eggs, then he wasn't someone I wanted to date anyway, " Lizzie said. Though she admits subsequent endo surgeries have impacted their relationship and sex life, she calls him "the world's most amazing boyfriend. He's a saint."

Lizzie thought her surgery had "fixed" her condition last January when she landed a prestigious job covering aviation and regulation at CNN in Washington. But soon she was again doing battle with her body.

"I would do a live shot and then run to the bathroom and throw up, " she said. "One day I'd be on a gig at a flight school, doing great, and then the next day I was completely miserable and existing on Advil and Vicodin. Obviously I couldn't go on the air on Vicodin."

She took a leave of absence, but when her endo she wasn't getting any better, Lizzie stepped down. (She's currently doing freelance work for her former employer, NPR.)

Johns Hopkins University Press A Physician's Guide to Pain and Symptom Management in Cancer Patients
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Second opinions

by BobWang

Can't express enough how important it is to get a second opinion. I've been in agony for months, going nowhere fast with my neurologist, he diagnosed me with some 1 per 1 million population disease and started me on treatment for it. Ignored all my pain symptoms, gave me a crappy medicine that didn't work.
I went to get a second opinion, the guy said I definitely do not have what the first neuro diagnosed, gave me a med that day that took away one of the worst pains I've ever had, within hours of his visit.
I made more than 10 co-pays to the first neuro, and after 4 months I was worse off than when I got to him

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