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When I discovered endometriosis made the storyline of ABC's new primetime hospital drama, The Good Doctor, I was pumped and ready to grab a tub of popcorn and settle in for an evening of binge-watching millennial-style. But my excitement was fleeting because what I saw was a largely fictionalized representation of how endometriosis is truly operated on in the real world. I have no idea what kind of medical adviser they have for this show, but I do know that they have no idea about endometriosis!
The episode I watched featured a young woman who complained of pain and infertility. It's important to note: she was adamant about one day becoming a mother. She even had her kids’ names picked out. She told her caretakers this, and never once did they discuss the possibility of performing a hysterectomy, or obtain her consent for a hysterectomy.
Once in the OR, she's surrounded by a team of surgeons. (I had to laugh as I was used to operating solo. My assistant stood between the patient's legs.) They began a laparoscopy using a multi-port umbilical system—a fancy way of saying that all the tools went into the navel—and found endometriosis. Okay, great—but that was just the beginning of a 27-hour long operation! (Seriously? Someone call Guinness World Records for longest endometriosis procedure known to mankind).
The surgeons discover endometriosis lesions on the ovaries. The surgery starts with dissection of each Fallopian tube. There is much questioning back-and-forth between the surgeon and his many assistants. Finally, they see that the patient is bleeding out with low blood pressure and rising pulse. A laparotomy, or a wide abdominal incision, must now be done. A full 12 hours into the procedure, they realize that her bladder must be removed and reconstructed out of intestine. They then decide to do a hysterectomy because a mass on her uterus is compromising the ovarian and uterine blood vessels. Much time is spent in getting consent for her hysterectomy from the husband who cannot give it. Remember: the patient’s lifelong dream is to be a mother and she said so. The husband instead delegates the decision to the junior resident. The woman wakes up to learn she no longer has a uterus. I could've thrown my popcorn at the TV!
Here's where the TV docs went wrong. Her open laparotomy was unnecessary. Excision of large masses or nodules can be done using laparoscopic techniques. To do this, one must open the bladder, excise the lesion, and then repair the bladder. Another big problem? The surgeons called her endometriosis "invasive." This is simply not true. People die from disease that is invasive. To call endometriosis invasive is really to liken it to cancer. Deep Infiltrating Endometriosis (DIE) should really be called Deep Fibrotic Endometriosis (DFE). What's the difference, you ask? When a surgeon operates on endometriosis, it's really fibrosis, or scar tissue, that is surrounding endometriosis glands and stroma (connective tissue). Finally, laparoscopic hysterectomy for extensive endometriosis has been done for 30 years. I've said it before, and I'll say it again: hysterectomy for endometriosis should be a patient decision. Patients should always be able to find an endometriosis specialist who can preserve her uterus. Also, hysterectomy for extensive endometriosis can take three to eight hours, rarely more, so 27 hours is out of the question.
On another note, I'd also like to address a comment I received about my last column, IBS Is a 'Wastebasket Diagnosis' from the founder of IBSPatient.org:
"I have seen your credentials and I know that you are a very skilled doctor in your field. When it comes to your medical opinion of Irritable Bowel Syndrome (IBS) you are very wrong. Your comments about IBS as being a wastebasket diagnosis is hurtful and harmful for the 20% of the nation that suffers from IBS. IBS is not a collection of gripes as you have described. Rather the quality of life for an individual who suffers from IBS is equivalent to someone with kidney disease, forever tied to a bathroom versus a dialysis machine. What is even more disturbing is that more women than men are diagnosed with IBS in western medicine. Given your field of work, we would have expected someone like yourself to have a little more insight about IBS. Gastroenterologists who manage IBS follow a patient's history and symptoms using the Rome Criteria to diagnose an individual with IBS. It is not a wastebasket diagnose given that many researchers have spent most of the careers trying to unravel the cause and to find treatments for the millions of sufferers nationwide. IBS is not caused by diet and specifically by not eating well. We all wish it was as simple as that because then we would all be cured. I am personally surprised and disappointed that an expert in your field would not have first done a morsel of research before answering this question about IBS versus endometriosis. It is true that many women do seek help for symptoms which could be confusing. Some even have unnecessary surgery when IBS is really the cause. We ask that you please be a little more sympathetic and please spend some time doing some research around current papers on Irritable Bowel Syndrome."
Jeffrey Roberts, MSEd, BSc
Thank you for your very informative letter, Jeffrey. I agree with almost everything you say. My communication is an opinion column, not a researched fact as per medical literature columns.
My practice dealt with extensive endometriosis. My focus, while seeing most patients, was my pelvic examination. If I felt no pain or tenderness, I questioned the diagnosis of endometriosis and sent the patient elsewhere unless she insisted on a laparoscopy, which most times proved to demonstrate no endometriosis. I agree that sometimes pictures documenting no endometriosis is just as good as wondering if you have it. My practice also dealt with extensive adhesions. These were patients who had undergone multiple laparotomies, often more than 10. The patients presented with pain and partial bowel obstruction symptoms. Thus, these were patients with severe cramping of their intestines. These symptoms could be confused with IBS. However, I operated on the basis of the patient’s symptoms and previous surgery. These operations were long and tedious as I attempted to separate intestinal adhesions from the small intestine down to the rectum. Usual operating time was greater than four hours, and most patients experienced significant relief. Incidentally, this procedure still has no billing codes, and many surgeons wait until the patient becomes completely obstructed before doing the operation.
Editor’s note: The opinions, beliefs, and viewpoints expressed by Dr. Harry Reich in this column are solely his own and based on his experience.
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