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Bowel Endometriosis Diagnosis: One Woman’s Story

In search of effective symptomatic treatment and a physician to provide it

When a recommended treatment failed, she followed doctor after doctor. “I went to gastroenterologists, gynecologists, infectious disease doctors, homeopaths – I saw them all. I had unnecessary procedures like endoscopy and colonoscopy, which look inward, not outward, of organs where the lesions are. I went to the emergency room twice and I I’m in so much pain that I felt like someone was stabbing me with a knife in my intestines. They always sent me home saying IBS.” β€œNo one ever talked about diet. No one ever mentioned the possibility of endometriosis.”

Related: Endometriosis and Other Common Causes of Hip Pain

Missed opportunities for a correct diagnosis

There have been a few instances of impending failures. Before she had her son, 27 years ago, Rodin’s gynecologist told her, “You have endometriosis, so you might have a hard time getting pregnant.”

“I didn’t know what she was talking about. She never pursued, and then retired. I got pregnant right away, so I thought I shouldn’t get pregnant, no matter what. I’d never heard that term before,” Rodin says.

Endometriosis appears in the family

Rodin’s sister was later diagnosed with endometriosis, but since her symptoms (severe menstrual cramps, heavy bleeding and clotting, but no stomach issues) were so different from Madeleine’s, she didn’t think so. β€œI would go to the best people, those who are the first in their fields. I trusted them.”

Missing link? Communication between gastroenterologist and gynecologist

In Rodin’s opinion, a common problem is the lack of communication between the gastroenterologist and the gynecologist. “I thought it was a stomach problem, so I went to him. Why would I talk to my gynecologist about stomach issues? But the gastroenterologist never recommended it, and the gynecologist never picked it up. They all just went with a diagnosis of IBS. There’s a break in communication that needs to correction in the medical community,” she says.

Related: Could this hack be the first step toward treating endometriosis for infertility?

Struggling to overcome symptoms in everyday life

Over those long decades, Rodin’s quality of life suffered greatly. “I had a very dangerous life. They say you get used to the life being dealt with, but I never did. I would wake up every day, hoping to have a good day. I never knew if I could go to work, or baseball.” for my kids or lunch, until I went to the bathroom for the first time in the morning. If the morning went well, there was a good chance I would be fine that day. Sometimes at work I have to lie on my desk floor. But I couldn’t predict or plan. Everyone in my life knew that if they made a plan with Madeleine, it was temporary. It was very frustrating,” she recalls.

The recurring symptoms were difficult for her relationships

Her family life was also damaged. She felt guilty that her son had grown up with a mother who often wasn’t feeling well. β€œI also think he did a number in my marriage, which ended. I guess [the disease is] Partially responsible. There were a lot 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 really bad patch, and she could barely leave the house. Read about Dr. Sekin’s The New York Times And I thought, at that point, what do you have to lose?

She saw him in June, and when she told him her pain was in the lower right side, he pointed out that this was unusual for IBS, which ended up everywhere. Endometriosis was suspected. The only way to get a confirmed diagnosis is surgery. During this surgery, he removed 26 endometriotic lesions on the right side of her intestine (the site of most of her pain), one on the right, and more in the uterus. Another member of the team removed the appendix which was covered with fibrosis and lesions on the peritoneum, the abdominal wall.

Pain relief after surgery

β€œWhen I woke up from the surgery, I felt pain from the operation but didn’t feel it who – which The pain, that sharp, stabbing pain that I’ve lived with for so long,” she says.

Life on the other side of successful treatment

Rodin feels like she’s got her life back. “I’m so glad I didn’t give up. I can make plans and keep commitments. I can get back to the charitable work I’m doing, which I haven’t been able to participate in as I would have liked. I wish I could live a fuller and more productive life. Traveling might be more doable now!” ” Says.

If these symptoms sound familiar…

For other women who struggle with misdiagnosis, Rodin adds, “Trust yourself and your experience. Don’t go along with what your doctor says if your condition doesn’t improve. Don’t let them tell you it’s all in your head or just stress. You’re not making it up. Your experience is real. Keep going. In research and investigation. Question your doctors, even if they are supposed to be the best. You don’t have to settle and you shouldn’t feel this way. I settled on it because I didn’t think I had any other options. But I did, and you too.”

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