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The surgical "gold standard" fails endometriosis patients
We need standardized diagnostic tools, treatments, and surgical techniques
Bindi Irwin's endometriosis journey began like many others'. Eight years of nausea, pain, and fatigue met with dismissive doctors and no diagnosis. Her suffering isolated her from people outside of her family, stealing joy from activities she loved. Then the well-known wildlife conservationist learned that her symptoms mirrored a friend's endometriosis diagnosis.
What followed for Irwin was atypical: a connection to a renowned New York surgeon, a successful surgery at the age of 24, and a return to a full, comfortable life.
Sadly, few of the approximately 30% of endometriosis sufferers who eventually need follow-up surgery after diagnosis (once medical and hormonal treatments have failed) experience such a straightforward path to relief. Finding a qualified surgeon can be a disheartening maze, made worse by the lack of standardized surgical guidelines in the U.S.
Endometriosis is typically diagnosed by laparoscopy, a minimally invasive surgery where a camera is inserted into the abdomen and suspected lesions are removed, then sent to a pathologist to confirm the diagnosis. Although considered the "gold standard" for endometriosis diagnosis, laparoscopy leads to 10% to 20% of cases being misdiagnosed. Often during the procedure too few "suspected lesions" are removed to confirm the patient's diagnosis.
That's a lot of uncertainty for a "gold standard" diagnostic procedure.
Moreover, the usual criteria we might seek in a surgeon are more challenging to pin down when it comes to endometriosis.
Looking for a surgeon with years of experience? Decades may not be enough if a surgeon hasn't consistently performed endometriosis procedures. I've learned through participants in our Research OutSmarts Endometriosis (ROSE) study that performing one endometriosis case per week or month may not be sufficient. However, solid data on this do not exist.
Searching for a surgeon's endometriosis case numbers and outcomes? That information is also unavailable. Not surprisingly, many endometriosis patients turn to forums on social media platforms like Facebook or Reddit where people subjectively promote some surgeons and procedures while discouraging or blacklisting others.
Not all endometriosis surgeries are simple, and a patient's symptoms may not correlate with the severity of their disease. Patients with severe endometriosis requiring follow-up surgery may need a multidisciplinary approach because lesions can grow beyond the reproductive organs, such as in the rectum, intestines, bladder, or lungs. That means assembling a team of ob/gyns, colorectal surgeons, urogynecologists, and even vascular and thoracic surgeons — which may be challenging in some parts of the country. Surgeons may be surprised by where they do and don't find lesions. Have the surgeons required imaging such as an MRI or ultrasound prior to the procedure to help guide it? Hopefully — but not necessarily. No standards require it.
There is also no consensus on the most effective method for removing lesions. Surgeons use excision (cutting), ablation (e.g., burning or freezing), or both, though numerous studies show inconsistent or no difference in outcomes between them. When a surgeon burns off a lesion, it can't be sent to pathology to confirm whether endometriosis is present. Another issue to consider is conventional versus robotic-assisted surgery -- it is unclear which, if either, is better.
The harsh truth is that surgery for endometriosis may not eliminate pain. Additionally, endometriosis may lead to infertility, though it did not for Irwin. While surgery improves the chance of pregnancy, whether spontaneous or via in vitro fertilization/assisted reproductive technology, it may not help everyone. Also discouraging is that up to one-third of endometriosis patients go on to a repeat surgery within 5 to 10 years.
Stories like Irwin's are too rare. Every endometriosis sufferer deserves clear answers, talented surgeons, preserved fertility, and a pain-free post-surgical life. That isn't possible yet because researchers like me still are learning what causes the condition and the most effective combination of pharmacological and surgical approaches. Rapid diagnosis, effective and tolerable treatments, and prevention should not be beyond our reach.
In the meantime, we should warn patients that some online forums are unreliable and may miss the needs of complex cases. Possible surgical candidates should be encouraged to find a truly communicative specialist in minimally invasive endometriosis surgery. It's also imperative to find a surgeon who collaborates with other specialists; routinely orders imaging before surgery; and connects current and former patients directly so they can discuss their experiences.
While surgical intervention might offer relief for some, it's crucial for those of us in the field of endometriosis to acknowledge the limits of current approaches and variability in patient outcomes. Our patients deserve clear, honest communication as we continue to research and develop standardized diagnostic tools, treatments, and surgical techniques to manage and cure this debilitating disease.
Christine Metz, PhD, is a professor at the Institute of Molecular Medicine at Northwell Health's Feinstein Institutes for Medical Research in Manhasset, New York, and directs the Research OutSmarts Endometriosis (ROSE) study.
This op-ed originally appeared on MedPage Today.
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