If you're having trouble finding an experienced endometriosis specialist, you're not alone.
An estimated one in 10 women suffer from endometriosis, and yet those who choose to go under the knife to manage their symptoms face a disproportionately small pool of doctors to choose from.
Nationwide, "I estimate there are only 100 endometriosis specialists in advanced laparoscopic surgery," Honorary Medical Director Emeritus and Senior Medical Advisor of EndoFound, Dr. Harry Reich, tells The Blossom. “There are over 40,000 OB-GYNs, and most of them do not do advanced laparoscopic surgery, which is required for a difficult endometriosis case.”
Reich says he's performed such surgeries throughout his 30-year career, and in turn, taught hundreds of gynecological surgeons. Still, he acknowledges, it's just a drop in the bucket, because few have followed in his footsteps.
For starters, Reich points to a dearth of young physicians in the field of advanced gynecological surgery.
“OB-GYN physicians will finish their training, and no matter how skilled they are, they have to join a practice, that, in most cases, requires them to do obstetrics in their younger days and gynecology when they are older. The number of doctors who actually start off as a laparoscopic surgeon as their primary interest is very few; I would estimate close to 5 percent.”
For those who do choose to buck that trend and go straight into the field, dealing with unfair compensation from big insurance companies is another sticking point.
Reich says doctors can perform a 10 to 15-minute-long diagnostic laparoscopy without biopsy, or perform a far more laborious 4 to an 8-hourlong operation to remove endometriosis lesions and yet “get the same payment,” from insurance companies.
Another factor that likely discourages many up-and-coming doctors is, perhaps, the sheer level of difficulty of performing the endometriosis-related surgical procedures. “Removing endometriosis can mean resecting a portion of the rectum in many cases, and gynecologists are not trained to perform rectal surgery," Reich adds. Apart from a woman's reproductive organs, endometriosis can also involve several other organs including the bladder, bowels, and diaphragm. Because of this, some endometriosis surgeons call in corresponding specialists to treat each during the procedure.
But perhaps, the biggest problem Reich says, lies in lack of proper endometriosis-related medical training and guidelines, something that he blames on The American College of Obstetricians and Gynecologists, (ACOG).
"I feel the true problem is mediocre surgery," says Reich, adding that “more care must be put into actual surgical teaching, as opposed to just innovations such as biotech and robotics. I would want to see specific centers teach endometriosis surgery, and specifically take biopsy samples. We do not have it in this country, but other countries such as Italy have demonstrated such at national conferences. Nevertheless, our laws and restrictions from hospitals prevent that from being done. There are even some places that have centers where patients go to for endometriosis; we don’t have that. We have no centers like that in the United States, and a big part of that is that ACOG does not want it."
(In a request for comment from The Blossom, ACOG EVP, and CEO, Dr. Hal Lawrence says: "Many patients with endometriosis can be treated hormonally, but not all women. Some women are going to need more aggressive hormonal or surgical treatment. Surgery should not be the first line of care because there are greater risks inherent to surgery.")
Still, despite the many obstacles in finding an endo specialist, Reich cautions women to remain stringent in their selection process.
“Find someone who does a lot of surgery for endometriosis," he tips, "and not just someone who writes about it.”
And one should also keep a mental checklist. "If the gynecologist does not perform a rectal exam, then the patient should look for another doctor, immediately. Secondly, if a gynecologist does not do laparoscopy with biopsy as documented by a pathology report, the patient should seek out another doctor." And lastly, he says it's telling if a specialist does not document the before and after of a patient's procedure. "Beware of the gynecologist who does not take pictures or videos of his surgeries."