Management after diagnostic surgery for endometriosis
As of now, excision surgery is the only known “treatment” that has been shown to actually TREAT the disease. It does not cure all patients of pelvic pain, but it is the best we have for endometriosis.
During one of my medical school Internal Medicine rotations, Dr. Sebastian often asked what tests or lab work we wanted to order. After spilling out a number of options that we were taught to order, he then asked us, “How will the results change your management?” Since that early rotation over twenty years ago, I continue to apply that principle to my endometriosis practice.
I have also begun to apply that principle to the care endometriosis patients receive.
I am a wholehearted believer in the superiority of surgical excision of the disease. During my Fellowship with Dr. CY Liu, I learned more about endometriosis and its management in one year than I did during my medical school rotations and four years of residency combined. Endometriosis is a tough disease. With varied presentations and varied behavior of the disease, it is difficult. Let us apply this principle to surgery for endometriosis.
In residency, we were – and still are – taught that surgery for endometriosis should be a ‘last resort’. The reasons for this are: 1. it is risky; 2. the probability of endometriosis “coming back” is high; and 3. long term outcomes are no better than hormone “therapy”. As doctors, we want to help our patients. We want to do something. Surgery has long been seen as the way to diagnose endometriosis. Some surgeons merely use surgery as a diagnostic tool – without performing any treatment e.g. removal of the disease. Others use surgery as a tool to try and treat the best that they can. In either situation, most “non-excision” gynecologists will finish the surgery, knowing that endometriosis was diagnosed and untreated or only partially treated. They will then recommend hormone therapy to “prevent progression”, “suppress the disease”, or “kill off the rest of it”.
If the mainstay of regular gynecology for treating endometriosis is hormone therapy regardless of the surgical findings, what is the purpose of the surgery? How will the surgery change the management after the wounds are healed? If the plan is to just diagnose and then keep using the same palliative hormones, what is the value of the surgery and is it worth the risk? This is the reasoning used by gynecologists to reserve surgery as a last resort.
The true value of surgery in endometriosis care resides in the desire to treat the disease and treat the patient. Note that there are no data to support the use of any hormone to prevent progression of endometriosis. There are no studies showing hormones “killing off” endometriosis. These statements are made up. There is a utility of a diagnostic surgery performed by regular gynecologists, but it does not lie in post-diagnosis hormone palliation.
The utility of a local surgery with a regular gynecologist relies on their ability to excise the endometriosis, document findings and refer for higher care when operative findings dictate or pain continues. We all recognize that endometriosis can be the most difficult benign gynecologic surgery we do. Even among excision specialists, there are varying levels of skill and comfort level. Gynecologists at all levels must be willing to refer to higher levels of expertise when the operative findings warrant.
Early in my career, I recognized this. I was trained to perform advanced endometriosis excision. However, at the time, I did not have a multidisciplinary team available to help with segmental bowel resection or diaphragmatic endometriosis. At that time, I would complete the surgery that I could, and then have an honest discussion with my patient. I did not tell them that the disease was too risky to remove or that they had to go on hormones to “kill off” the endometriosis I knew was still there. We discussed the findings along with the excision I performed combined with the pathology results. I then explained the areas of disease beyond my ability. We discussed the potential need for referral to a higher level of care. At that time, I made referrals to Dr. Redwine, Dr. Magrina and Dr. Sinervo.
These patients would go away for their surgery and then return to me for continued post-op care.
As my practice and ability has grown, my comfort level with these difficult cases has greatly increased. It is comforting to know that I have a multidisciplinary team around me to help with advanced bowel resection, diaphragmatic, thoracic and ureteral endometriosis if I need them. Surgical care equal to those whom I’ve viewed as mentors earlier in my career. As of now, excision surgery is the only known “treatment” that has been shown to actually TREAT the disease. It does not cure all patients of pelvic pain, but it is the best we have for endometriosis. It is the only treatment with documented patients who have been found to be disease-free. If a patient is willing to undergo the risk and financial burden of surgery, there must be value in that. Documenting disease and then returning to the same hormone palliation that has already been used, does not meet the value criteria.