Bowel Endometriosis Diagnosis: One Woman's Story Everyday Health MenuNewslettersSearch Endometriosis News Unrecognized Endometriosis Despite 40 Years of Severe Pain Misdiagnosed as IBS This Woman Didn' t Give UpIn 2018 Madeleine Rudin finally learned the true cause of her abdominal pain: bowel endometriosis. By Beth LevineMedically Reviewed by Kacy Church, MDFebruary 5, 2019Everyday Health ArchiveMedically ReviewedAfter living with pain for decades, Madeleine Rudin wants others to advocate for themselves. Photo Courtesy of Madeleine RudinFrom the outside, Madeleine Rudin, of Greenwich, Connecticut, may seem like one of those golden people who have a life untouched by care. A member of the Rudin Management Company family, she serves on the executive committee of one of the largest privately owned real estate firms in New York City. She has also been able to do meaningful work as a board member of the Cooper Hewitt National Design Museum, the Greenwich Art Society, the May and Samuel Rudin Family Foundation, the Louis and Rachel Rudin Foundation, and the Rudin Foundation. (Her family has always been active in charitable and civic affairs. The New York Times obituary of her father, Jack Rudin, read, “They gave landlords a good name.”) RELATED: Celebrities Who Speak Publicly About Their Endometriosis She Endured Four Decades of Debilitating Pain The truth is, however, that for 40 years, Madeleine Rudin struggled with the debilitating abdominal pain, mental stress, and frustration that go with misdiagnosed bowel endometriosis. Yes, she had all the best doctors in the country available to her, but she still wasn’t properly treated. Endometriosis Is a Common Yet Misunderstood Problem Endometriosis, a chronic disease in which tissue similar to the endometrium grows outside the uterus on surrounding organs, causing severe pain and sometimes infertility, affects 1 percent of American women. Tamer Seckin, MD, a board-certified gynecologist and laparoscopic surgeon in private practice at Seckin Endometriosis Center in New York City, is the physician who finally gave Rudin a correct diagnosis and successful treatment. He estimates that 25–30 percent of his endometriosis patients are affected directly on or around the intestines or bowel. RELATED: 10 Ways to Relieve Period Cramps ' You Have Spastic Colon ' She Was Told Rudin, now 63, first started experiencing constipation and nausea around her period in her teens. At 23, the symptoms became much worse: Severe cramping pain on her lower right side that radiated down her leg. “It did cause me to miss work sometimes and made it almost impossible to leave the house before 9:30 a.m. because the discomfort or pain wouldn’t be relieved until I had a bowel movement. Since I needed to go to my jobs, I could spend the days being very uncomfortable,” she recalls. RELATED: The Top Endometriosis Instagrammers — and Why They’re Important Her symptoms continued to increase in intensity until, at age 25, she finally went to see a doctor. After the usual tests, the doctor concluded that she had what was then known as spastic colon, now called irritable bowel syndrome (IBS). While IBS does share some symptoms with bowel endometriosis, it is not the same disease, and the treatments are very different. IBS can cause cramping, bloating, constipation, and diarrhea, but its symptoms do not increase during menstruation. Check out Tippi to get more real-life advice from other #EndoWarriors In Search of Effective Treatment for Symptoms and a Doctor to Provide ItWhen the recommended treatment failed to work, she tracked down doctor after doctor. “I went to gastroenterologists, gynecologists, infectious disease doctors, homeopaths — I saw them all. I had unnecessary procedures like endoscopies and colonoscopies, which look at the inside, not the outside, of the organs where the lesions are. I went to the emergency room twice with pain so severe it felt like someone was stabbing me with a knife in my intestines. They always sent me home, saying IBS,” she says. “No one ever talked about diet. No one ever brought up the possibility of endometriosis.” RELATED: Endometriosis and Other Common Causes of Hip Pain Missed Opportunities for Correct Diagnosis There were a few near misses. Before she had her son, 27 years ago, Rudin's gynecologist told her, “You have endometriosis, so you might have trouble getting pregnant.” “I didn’t know what she was talking about. She never followed up, and then she retired. I got pregnant right away, so I figured I must not have it, whatever it was. I had never heard the term before,” Rudin says. Endometriosis Shows Up in the Family Rudin's sister was later diagnosed with endometriosis, but since her symptoms (intense menstrual cramps, heavy bleeding and clotting, but no stomach issues) were radically different from Madeleine’s, she didn’t consider it. “I was going to the best people, the ones considered the tops in their fields. I trusted them,” she says. A Missing Link Communication Between Gastroenterologist and Gynecologist In Rudin’s opinion, a common problem is the lack of communication between gastroenterologist and gynecologist. “I thought it was a gastric problem, so that’s who I went to. Why would I talk to my gynecologist about gastric problems? But the gastroenterologist never recommended that, and my gynecologist never picked up on it. They all just went with the IBS diagnosis. There is a disconnect that needs to be corrected in the medical community,” she says. RELATED: Could This Breakthrough Be the First Step Toward an Endometriosis Infertility Cure? Struggling to Cope With Symptoms in Daily Life Over those long decades, Rudin’s quality of life suffered greatly. “I had a very compromised life. They say you get used to the life you are dealt, but I never did. I woke up every day, hoping to have a good day. I never knew if I could go to work, my kid’s baseball game or lunch, until I went to the bathroom for the first time in the morning. If the morning went well, there was a decent chance I’d be okay that day. Sometimes at work, I’d have to lie down on the floor of my office. But I could never predict or plan. Everyone in my life knew that if they made a plan with Madeleine, it was tentative. It was so frustrating,” she recalls. Recurring Symptoms Were Hard on Her Relationships Her family life also took a hit. She felt guilty that her son was growing up with a mother who didn’t feel well a lot of the time. ”I also think it really did a number on my marriage, which ended. I think [the disease is] partly responsible. There were plenty of other issues, but thinking back, I think he got tired of it,” she says. Finally Proper Diagnosis and Treatment In early 2018, Madeleine hit a particularly bad patch, and could barely leave the house. She read about Dr. Seckin in the New York Times and figured, at that point, what was there to lose? She saw him in June, and when she told him her pain was on the lower right side, he noted that was unusual for IBS, which is all over. He suspected endometriosis; the only way to get a confirmed diagnosis was surgery. During this surgery, he excised 26 endometriosis lesions on the right side of her bowel (the site of most of her pain), one on the right, and more on the uterus. Another team member removed her appendix, which was covered with fibrosis, and lesions on her peritoneum, the wall of the abdomen. Post-Operative Pain Relief ”When I woke up from surgery, I had pain from the operation but I didn’t have that pain, that sharp, stabbing pain I'd lived with for so long,” she says. Life on the Other Side of Successful Treatment Rudin feels like she has her life back. “I am so glad I didn’t give up. I can make plans and keep commitments. I can get back to the charity work I do, which I hadn’t been able to be as involved in as I would have liked. I can hopefully live a more full and productive life. Traveling might be more doable now!” she says. If These Symptoms Sound Familiar … For other women who are grappling with a misdiagnosis, Rudin adds, “Believe in yourself and your experience. Don’t just go along with what your doctor says if you are not getting better. Don’t allow them to tell you it’s all in your head or just stress. You are not making it up; your experience is real. Keep researching and investigating. Question your doctors, even if they are supposed to be the best. You don’t have to settle and you don’t have to feel this way. I settled with it because I didn’t think I had any other choices. But I did, and you do, too.” More in Endometriosis Get Real-Life Tips From Other #EndoWarriors How to Boost Your Sex Life When You Have Endo 7 New Ways to Relieve Endometriosis PainNEWSLETTERS Sign up for our Women' s Health Newsletter SubscribeBy subscribing you agree to the Terms of Use and Privacy Policy. 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