What It’s Like to Suffer from Endometriosis, from 5 Women Who Know

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Endometriosis

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Periods are, and always will be, an irritating fact of life. For some women, though, they’re more than just an inconvenience—they’re downright debilitating. If you fall into the latter category and your period arrives with excruciatingly painful cramps that leave you struggling to get out of bed, the culprit could be endometriosis. It’s actually not as unlikely as you might think: Right now there are 176 million women suffering from the condition—one in 10 in the U.S. And thanks to celebrities such as Padma Lakshmi and Lena Dunham becoming particularly vocal about their struggle with the disease recently, the term endometriosis is getting a lot more attention from mainstream media.

Dr Iris Orbuch, director of the Advanced Gynecologic Laparoscopy Center in New York City, specializes in advanced laparoscopic surgery for endometriosis and is one of the country’s top experts in the field. She appears in new educational documentary “Endo What?” and told us that endometriosis is usually accompanied by symptoms including “painful periods, painful sex, infertility, constipation, painful bowel movements, right and/or left sided pain, and back pain.”

Dr Orbuch said it usually takes a woman suffering with a lineup of painful symptoms 10 or 12 years to get an accurate diagnosis. “The reason is that there are masquerading symptoms which involve multiple organ systems (gynecological, gastrointestinal, and sometimes urological), as well as inability to diagnosis endometriosis via traditional imaging modalities.” She means that even women with advanced endometriosis show up with normal results when given an ultrasound, CT scan, or radiological imaging. “Endometriosis can only be diagnosed at the time of laparoscopic surgery,” she added.

Even then, after a decade of doctors appointments, tests, and pain, treatment options aren’t great: “The gold standard for treatment is laparoscopic excision of endometriosis. This surgery is very difficult; most say more difficult than cancer surgery. That is why excision of endometriosis is performed by less than 100 physicians in the country,” Dr Orbuch said. The risks of this surgery could include a reaction to anesthesia; infection; bleeding; adhesions; or injury to bowel, bladder, or reproductive organs. Some patients respond well to being on birth control pills, which is believed to temper the symptoms; however, that’s not the answer for many women.

There are natural methods that women have found to help with pain, and Dr. Orbuch recommends her patients eat a low-inflammatory diet and keep away from processed foods. She’s also seen acupuncture, mindful meditation, and yoga help.

Still, the options are underwhelming, and there are millions of women around the country who know this firsthand. We spoke to five women—some who were featured in “Endo What?”—to find out what it’s like to live with the condition, how they were diagnosed, treatments they’ve tried, what’s worked, and what hasn’t.

Emily-H

How she was diagnosed: “The pain can be so excruciating in moments that I can’t do anything but lie down and wait for the pain to pass with a heating pad on my stomach. My pain started around the same time as my first period—I remember I was at a Taylor Swift concert when the pain episode first hit. Since that moment on, I had to go to a number of specialists both in Boston and Minnesota at the Mayo Clinic. Before I was diagnosed with endometriosis, the chief gastroenterologist‎ doctor at a hospital in Boston told me I had functional pain, basically saying that I was making it up for attention. The doctor told me to stop confusing my body with my thoughts, which was frustrating because I knew I wasn’t making this pain up.

I didn’t find a diagnosis until October 2011, almost a year and a half later after my first pain attack. During that year of diagnosis, I missed almost three months of school.”

Treatments she tried: “I’ve gone to chiropractors, which helped with some pain and other times didn’t help at all. I did acupuncture, which made my symptoms worse. I did pain therapy, which didn’t help. I also did reiki and acupressure at Children’s Hospital Waltham, which did help, but not enough to make me stop missing school. I have also had two laparoscopies [surgeries] for my endometriosis, but they didn’t decrease my pain a substantial amount. I’ve been on tons of different medicines, but the only medicine that has helped me a lot is Synarell. But even with that, I’m still not back to living a normal life.”

Amber-F

How she was diagnosed: “I began experiencing absolutely debilitating cramps in middle school, causing so much pain it would make me feel faint. Eventually this monthly symptom became a daily reality, along with throbbing lower back pain, pulsating pain in my ovaries, and a constant pulling sensation that I would later learn was a combination of copious amounts of adhesions and my ovaries being adhered to my abdominal wall and colon.

I think the biggest misconception about living with endometriosis is that the pain a woman experiences is limited to just her monthly period. I had pain morning, noon, and night on every day of my cycle, regardless of if I was on the pill or not. When I was 28 years old, my daily pain was still taking its toll, and my last three gynecologists assured me my pain was normal. I attended a family wedding and was in so much pain I was unable to dance. A week later I fainted at work. I called my gynecologist and asked her to perform an ultrasound. She did, and I received a call a day later with the news: “You have 5 chocolate cysts, which means you have endometriosis, which is easily treatable with birth control.”

Treatments she tried: “After three months, I was sick of this form of  ‘treatment [birth control],’  and my pain was becoming unbearable. After telling [a new doctor] my story of 15 years of pain, seven doctors, endless questions, and no answers, Dr. Albee said he was positive I was stage IV, and he wanted to perform surgery on me as soon as possible. I was formally diagnosed with stage IV endometriosis. The only thing that got rid of my pain was having excision surgery. The recovery was a long time for me, but now (two years post-op) the only time I experience pain is when I should—during ovulation and my period, not all the time. And it’s mild. ”

Emilie-S

How she was diagnosed: “I always had reasonably painful and exhausting periods but thought that was normal. I had been getting progressively ill and tired over a number of years, but on the occasions that I asked doctors, [I] was told I was just too busy and needed more rest. I had a pretty busy work, social, and travel life, so was easily convinced by that theory. In hindsight, it is not normal to feel that fatigued so often. Increasingly often, I felt like I had the flu, with body pains and a general feeling of malaise, but no viral symptoms. They did blood tests but never followed up when the tests came back negative for anything that could cause pelvic pain—except for a gynecologist who put me on six courses of antibiotics to cure me of a ‘stubborn gut bacteria.’

By 2014, I had developed gynecological pain and was given topical estrogen cream that is usually given to postmenopausal women, under the presumption that I had thinning padding in my tissue.

Symptoms got worse, and I am told that the constant pain I experienced for six months was akin to the contraction pains in the early hours of childbirth. I knew I had to take a different approach to my next medical appointment and did something I now recommend to everyone—I typed out a full list of my medical history, family history, and current symptoms for my doctor. A new doctor felt sure I had endometriosis, plus asked a few simple questions that no other doctor had thought to ask, which made it clear that I also had interstitial cystitis (IC), pelvic floor dysfunction (PFD), and central nervous system centralization. There is an 80- to 90-percent correlation between endometriosis and IC, so I now realize that this was no surprise.”

Treatments she tried: “I now know that much of my pain was from IC (bladder inflammation). Using the IC Diet app and starting new medication helped. I immediately started physical therapy, which gave me genuine relief. I wish that more people knew that interstitial cystitis and pelvic floor dysfunction often occur with endometriosis. Recognizing those symptoms can be useful in diagnosing endometriosis, by association.

I had robotic laparoscopic surgery last November. It turned out that the pain that had seemed like appendicitis was because I had endometriosis on my appendix, so my appendix was removed, as well as 16 endo implants [displaced endometrial tissue throughout the abdominal and pelvic area].”

anon 19 What Its Like to Suffer from Endometriosis, from 5 Women Who Know

How she was diagnosed: “My endometriosis has expressed itself only through gastrointestinal (GI) symptoms like constipation, bloating, distention, abdominal pressure, and indigestion. I never had any trouble with my periods. My symptoms started all of sudden after taking a double dose of birth control for a few weeks (the OB told me that this was a good way to get started on birth control). I went all over the country trying to get a diagnosis and believe I only got one because I have a doctor in the family and a mom who wouldn’t give up.

Treatments she tried: I have had robotic laparoscopic surgery, which helped a little, but I still suffer a lot from the same symptoms. I have had to start taking so many different laxatives and IBS-related medicines, but nothing has really worked. I am trying to look for other ways to control the abdominal pressure and constipation.

Shannon-C

How she was diagnosed: “The vast majority of my symptoms are GI-related, like nausea, bloating, food sensitivities, as well as full-body symptoms like fatigue. I first had symptoms at 16 and wasn’t diagnosed until I was 29 years old, so 13 years of misdiagnoses, pain, and infertility. As a teen, I was told both by my pediatrician and my primary-care provider that the cramps were normal and nothing to worry about. I was given painkillers to use for a day or two when pain was the worst, but no one ever explored what could be causing these extreme symptoms. I was only diagnosed by accident when I had surgery to have an ovarian cyst removed. Three surgeries later (the first two of which were ineffective and did more damage than good), and I manage my symptoms much better.”

Treatments she tried: “I’ve tried hormonal treatments, nutritional changes, and complementary therapies like acupuncture, herbs, homeopathy, massage, and more. The only thing that actually treated endometriosis is quality excision surgery. All of the other things can help manage symptoms, but they do not treat the disease.”

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