If you're having trouble finding an experienced endometriosis specialist, you're not alone.
An estimated one in 10 women have endometriosis, yet those who choose to have surgery to manage their symptoms face a disproportionately small pool of skilled endometriosis surgeons.
"Today, estimates are that there are only about 100 endometriosis specialists skilled in advanced laparoscopic surgery," says EndoFound Board of Director and Honorary Medical Director Emeritus Dr. Harry Reich.
"There are over 40,000 OBGYNs in the United States. Most of them do not do advanced laparoscopic surgery, which is the preferred treatment for the more difficult cases of endometriosis," says Reich.
Reich says he's performed such surgeries throughout his 30-year career and taught hundreds of gynecological surgeons. Still, he acknowledges, it's just a drop in the bucket, because few have followed in his footsteps.
Why is it difficult to find an endometriosis excision specialist?
For starters, Reich points to a shortage 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 start as a laparoscopic surgeon as their primary interest is very few; I would estimate close to 5 percent."
For those who 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 difficult 4 to 8-hourlong operation to remove endometriosis lesions, and the payment from the insurance companies is the same for both procedures.
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," said Reich.
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, Reich says that the biggest problem lies in lack of proper endometriosis-related medical training and guidelines, which 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 than 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. Even some places 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."
Retired ACOG EVP, and CEO, Dr. Hal Lawrence, previously told the Endometriosis Foundation of America (EndoFound.org) Blossom blog that "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."
Despite the many obstacles in finding an endometriosis 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 immediately look for another doctor, and secondly, if a gynecologist does not do laparoscopy with biopsy as documented by a pathology report, the patient should seek another doctor," said Reich.
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."
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