29-Year-Old Said Doctors ‘Gaslit’ Her Into Thinking Her Endometriosis Was Irritable Bowel Syndrome

Always Be Your Own Advocate

• Sarah Mahon, a 29-year-old who works as an animator, was suffering from intense bloating and debilitating stomach pain for two years that left her nauseous unable to get out of bed at times. Numerous doctors dismissed her health issues as digestive problems — Mahon wound up having endometriosis all along, as she suspected, and paid for a private surgery.
• Endometriosis occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. It often brings debilitating pain and can often be difficult to diagnose.
• Although endometriosis and endometrial cancer cause similar symptoms, they are not the same. In the case of endometrial cancer, the endometrial cells lining the uterus become cancerous, while endometriosis remains benign, or non-cancerous.
• When it comes to your health, it’s okay to be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don’t hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. Keep seeking multiple opinions until you feel you are being heard.

29-year-old Sarah Mahon was suffering from intense bloating and debilitating stomach pain for two years that left her nauseous unable to get out of bed at times, and numerous doctors dismissed her health issues as digestive problems — she wound up having endometriosis all along, as she suspected. Endometriosis occurs when tissue similar to the tissue that normally lines the inside of the uterus, known as the endometrium, grows on the outside of the uterus. It often brings debilitating pain and can often be difficult to diagnose. RELATED : Crocodile Hunter Steve Irwin’s Daughter, 25, Endured 10 Years of Pain and Misdiagnoses Before Finding Relief for Endometriosis The London native, in an interview published on dailymail.com via Kennedy News and Media, says doctors gaslit her into thinking her condition was something else entirely, despite insisting she might have endometriosis. "Four of the [seven] doctors told me I had [irritable bowel syndrome] IBS and another said I had irritable bowel disease (IBD)," she recalled of the agonizing journey. IBS, per Cleveland Clinic , is a chronic condition that causes constipation, gas, bloating and diarrhea. IBD, according to Mayo Clinic , is a chronic inflammation of tissues in your digestive tract, believed to be immune system related. Mahon, at one point, even looked "five months pregnant" with no answers. "I felt like they didn't believe me about my symptoms. I felt so dismissed about the whole thing."

"I had asked about endometriosis and told them my mother had it but they said it was related to the indigestion issues and just wouldn't test me." "One of the worst parts of this whole experience was the gaslighting that I received from doctors," she noted, explaining that she was told it would "take a lot of resources for them to test me for something I didn't know I had. I was dismissed over and over about it." RELATED : Young Mom Has Twenty Years of Misdiagnosis, Torturous Menstrual Periods– How She Finally Figured Out It Was Endometriosis Mahon believed that all of her symptoms matched up with endometriosis, including the intense fatigue she was experiencing. "Some mornings I couldn't move my arms and legs because I was so tired — the fatigue was so bad." Finally, Mahon booked a private consultation at a London clinic, and scans revealed that she did indeed have the condition. The 3D animator by trade had to shell out thousands for an operation to remove the excess tissue that was discovered in her pelvic wall and in between her rectum and uterus.

"The post-surgery pain was nothing compared to how it's been. The pain has gone completely. I have so much more energy now. I feel like a new person."

Learning More About Endometriosis

Although endometriosis may present symptoms similar to endometrial cancer, it is “not cancer,” OB/GYN and oncologist at Cedars-Sinai Medical Center Dr. Bobbie Rimel previously told SurvivorNet. “Endometriosis is the term for whenever those endometrial cells, those lining of the uterus cells, are outside of their normal place, which is inside the uterus,” Dr. Rimel explained, again adding that it is a benign condition, which means non-cancerous. “ Endometrial cancer is actually when cells of the lining of the uterus become cancerous and begin to invade the uterus wall," Dr. Rimel continued. "[The cancer cells] may spread to the fallopian tubes, to the ovaries or the lining of the pelvis or elsewhere in the body." Be Pushy, Be Your Own Advocate… Don’t Settle According to Johns Hopkins Medicine , endometriosis usually occurs on or near reproductive organs in the pelvis or abdomen, can be found in other areas such as the fallopian tubes, ligaments around the uterus (uterosacral ligaments), lining of the pelvic cavity, ovaries, outside surface of the uterus, space between the uterus and the rectum or bladder. In rare circumstances, it can also grow on and around the bladder, cervix, intestines, rectum, stomach (abdomen), and vagina or vulva.

Symptoms of Endometriosis

According to the World Health Organization (WHO), “Endometriosis often causes severe pain in the pelvis, especially during menstrual periods. Some people also have pain during sex or when using the bathroom. Some people have trouble getting pregnant. “Some people with endometriosis don’t have any symptoms. For those who do, a common symptom is pain in the lower part of the belly (pelvis). Pain may be most noticeable during a period, during or after sex, when urinating or defecating.” Some may also experience:

• chronic pelvic pain
• heavy bleeding during periods or between periods
• trouble getting pregnant
• bloating or nausea
• fatigue
• depression or anxiety

Pushing For A Correct Diagnosis

When it comes to your health, be a little pushy. You know your body better than anyone else. When you see a doctor for a problem, don't hesitate to make sure that your question is fully answered and that you are comfortable with the plan moving forward. From a doctor's perspective, every problem should have a diagnosis, a treatment, a plan for follow-up, and a plan for what happens next if the treatment doesn't work. RELATED : Comedian Amy Schumer Experienced Debilitating Pain Before Treatment for Endometriosis As a patient, if you don't feel like each of these four things has been accomplished, just ask! Even if it requires multiple visits or seeing additional providers for a second opinion, always be your own advocate. The Importance of Being Your Own Advocate Dr. Zuri Murrell , director of the Cedars-Sinai Colorectal Cancer Center, previously told SurvivorNet that healthcare guidelines are meant to do the right thing for the largest number of people while using the fewest resources. "The truth is you have to be in tune with your body, and you realize that you are not the statistic," he said. Dr. Murrell told SurvivorNet that not every patient will "fit into the mold," so it's important to educate yourself and be your own health care advocate. RELATED : ‘It Was Bad’: Fashion Designer Alexa Chung Details Ovarian Cancer Scare Before Being Diagnosed with Endometriosis "Every appointment you leave as a patient, there should be a plan for what the doc is going to do for you, and if that doesn't work, what the next plan is," Dr. Murrell advised. "And I think that that's totally fair. And me as a health professional that's what I do for all of my patients." Contributing: SurvivorNet Staff