I have Sphincter of Oddi Dysfunction or SOD, a female-dominant health condition that caused me to give up a successful career as a not-for-profit director, lobbyist, and advocate. I could not parent and spent a year vomiting, in severe pain, and on a feeding tube. I was 90 pounds and the emergency and hospital rooms became my second home. On several occasions, my gastroenterologist said postpartum depression and stress were causing these extreme symptoms. As I was dying I was told to shake it off, just eat, and reduce my stress. Not only was I very ill, I was blamed and shamed for being ill. Though my tests were normal, I knew my body and this was definitely not psychological in nature.
Fortunately, a surgeon friend of my mom’s suggested I be tested for something called Sphincter of Oddi Dysfunction. Having never heard of this disorder, I scoured the Internet for information and bingo! Everything finally made sense.
Gallbladder Removal and Sphincter of Oddi Dysfunction
The year was 1998. I had my gallbladder removed and soon after developed a severe and constant pain in my right side under my rib. After a few tests proved negative results, I was diagnosed with IBS and given a medication that did not work. Since pain medication barely touched the pain, I went without and learned to live with it. Avoiding certain food triggers, breathing exercises, and mindfulness/awareness techniques helped me function each day.
Fast forward to September 2011, three months after giving birth to my third son. I could not keep food down. The pain shifted to the area below my sternum. Later identified as pancreatic pain, it was searing and relentless. Weight was flying off of my 135 pound 5 feet 4 inch frame. For a year, I suffered; until I took matters into my own hands. I traveled from New York to the University of Minnesota to put a name to the mystery condition slowly killing me. There, I had an endoscopic retrograde cholangiopancreatography (ERCP) with manometry—the gold standard diagnostic test for SOD. Sure enough, the doctor told me I had a terrible case of SOD. The frustrating part of this was my doctors back home could have performed this test but insisted on the psychiatric diagnosis.
What is Sphincter of Oddi Dysfunction?
So what is Sphincter of Oddi Dysfunction or SOD? SOD is a condition where the sphincter valves controlling the flow of bile and pancreatic fluids do not open and close properly. SOD occurs most frequently following gallbladder removal (post-cholecystectomy). Symptoms include (but are not limited to):
- severe upper right quadrant pain
- pancreatic pain
- unintended weight loss
Sufferers often go undiagnosed or misdiagnosed as it is common for SOD patients to have normal bloodwork, scans, and procedural workups.
SOD and Women
SOD is most prevalent among women for unclear reasons. A culmination of studies published on the NIH website estimate this prevalence to range from 75-95%. However, surveys conducted in 2013 and 2014 by the Sphincter of Oddi Dysfunction Awareness and Education (SODAE) Network showed an astounding 98% of SOD sufferers are women.
I oversee The Sphincter of Oddi Dysfunction Awareness and Education Network (SODAE Network) website, Facebook page, and support group. As such, I read and listen to countless stories of doctors telling SOD patients not only that their symptoms are psychological, but that SOD does not even exist! Patients either exhaust their savings to travel far and wide to see a doctor who will help them (yes, there are some fantastic SOD doctors out there) or, those who cannot afford that option, are left with no treatment options and in time deteriorate physically and mentally.
Confusion amongst Physicians: Is Sphincter of Oddi Dysfunction Real?
At the center of this “SOD is not real” movement by some gastroenterologists is the National Institutes of Health study—The Evaluating Predictors and Interventions in Sphincter of Oddi Dysfunction (EPISOD) study, which I happened to be a participant in. The treatment at the center of the study, sphincterotomy, showed it did not relieve symptoms in all participants—not that SOD could not diagnostically be proven. The sphincter is cut so it will provide greater access for fluids to flow rather than get backed up. I had this and it did not work for me either. Two months later I had a transduodenal sphincteroplasty–a major abdominal surgery to sew my sphincters permanently open. I am happy to say I am doing well for the most part and consider myself in remission.
Theoretically, if the treatment did not relieve the patient’s symptoms, then the problem could not originate in the sphincter, which was now cut wide open. This makes absolutely no sense. Would we say other diseases measured by symptomology and/or diagnostic methods do not exist when a treatment is found to be ineffective, i.e. cancer, multiple sclerosis, Alzheimer’s, etc.? As we know, many diseases cause secondary conditions. It is quite possible SOD began as a primary condition, but as it precipitated (it often takes years to obtain a diagnosis), it spawned secondary issues like ductal spasms, nerve and/or visceral hypersensitivity, pancreatitis, malnutrition, or gut dysmotility. The original disease did not change. It was always there. However, once the sphincters were cut, the body still had these secondary issues.
Sphincter of Oddi Dysfunction is Real
Rather than spending valuable time recklessly slamming women with SOD and questioning SOD’s existence, researchers, policymakers, and the medical profession should be investing in women’s health, funding research to identify the cause of this condition. By learning the exact nature and cause of SOD, we can then move on to identify and develop effective treatments and preventative measures. Of particular note, is the need for investigating the possibility of a genetic and/or hormonal cause to SOD, since so many sufferers are women. No such study has been initiated, outside of a prairie dog study conducted in 1994 determining estrogen inhibited sphincter of oddi motility. That is a narrow bit of research on which to base medical opinion.
This article was published previously in January 2015.
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