3 Keys to Endo Diagnosis:
Stop, Listen, and Look
By Jessica Opoku-Anane, MD, MS
An accurate diagnosis starts with how patients describe their pain. It’s confirmed with a trained eye and laparoscopic camera.
Because I’m an endometriosis specialist and not a general practice gynecologist, patients often see me after spending years trying to get a satisfactory diagnosis. They experience significant anxiety and trauma when they’re forced to search from doctor to doctor for answers. A clear, clinical diagnosis of endometriosis can finally quiet their anxiety and make them feel confident that I’m taking the problem seriously.
Stopping the Cycle
Endometriosis can be a multi-system disease, with many signs and symptoms. Nevertheless, it is not difficult for physicians who understand the disease to make an accurate, early diagnosis. Gynecologists and other primary care doctors often refer patients with digestive symptoms to a gastroenterologist, bladder pain to a urologist, and so on. That means more time chasing dead ends.
The average delay from the first trip to the doctor to an accurate diagnosis of endometriosis is 10 years. Instead of generalists jumping to conclusions and referring patients outside of GYN, they can stop the cycle of delayed diagnosis – and save 10 years of misery – by taking an extra 5 minutes to evaluate patients for endometriosis or refer the patient to GYN specialists.
I always want patients with endometriosis to get the earliest diagnosis possible, so I’m pleased they come to see me, get answers, and ultimately get the treatment they need. My protocol for diagnosis starts with listening. When I ask patients questions about their health, a few things immediately jump out as potential endometriosis. Pain is the first.
People who have severe pain during their periods that can’t be controlled with ibuprofen or other over-the-counter pain relievers are likely to have endometriosis. They also often have pain at other times of the month. I describe it as “sick with pain” because the pain is debilitating. People might miss work or school. They’re at home and can’t get out of bed. That kind of debilitating pain is by no means normal.
I’ve encountered some women whose endometriosis was overlooked because they got pregnant and had children. They did not yet have fertility problems, but their pain is still a red flag for endometriosis. Often I’m told, “I was fine until I had my last child, and then all of a sudden I had severe pain.” This demonstrates that the endometriosis pain was controlled by birth control pills used before trying to conceive, the pregnancy, and then breastfeeding. When those three things improve the pain, it’s probably endometriosis.
People with endometriosis also can have heavy periods, bowel or bladder pain or problems, pain during sex, and infertility. The pain I described is enough for me to suspect endometriosis, but these other problems make it even more likely, plus they tell me all the areas we need to address with treatment. Once suspected, confirmation is achieved by looking laparoscopically.
Using a Trained Eye
Endometriosis cells are visible, so a diagnosis can be visually confirmed at any stage using a laparoscopic camera. However, it’s not uncommon for me to diagnose patients who’ve already had a negative laparoscopic exam. It reflects a problem in training, where many doctors cannot recognize the early stages of endometriosis by laparoscopy. Early lesions can be subtle, and they’re often missed. I train all of my residents and fellows to stop, listen, and look for all signs of the disease.
Jessica Opoku-Anane, MD, MS, is Director of the University of California San Francisco Center for Endometriosis.
* The participate is unpaid, non-solicited volunteers of information.
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