The search for surgeons

One of the most frustrating aspects of Endometriosis is finding a competent surgeon to treat Endometriosis properly. We go years, an average of 7-10, looking for a diagnosis. When we finally get an answer to our pain, we have to face the fact that there is no cure. In addition to there not being a cure, no medicine treats the disease, so we have to undergo surgery in hopes of finding pain relief. Doctors tell us that multiple operations will be in our future because endo “grows back” or whatever else the doctor decides to believe. Some doctors legitimately suggest getting pregnant, claiming it will go away after the baby is born. Alternatively, have a hysterectomy and be done with it. What? A hysterectomy does not cure Endometriosis. There are countless stories of individuals who have suffered post-partum or post-hysterectomy endo pain. ASome patients may experience relief during pregnancy or after a hysterectomy, but the disease will continue to progress.

According to our friends over at the ACOG, “After surgery, most women have relief from pain. But there is a chance the pain will come back. About 40–80% of women have pain again within 2 years of surgery. This may be due to endometriosis that was not visible or could not be removed at the time of surgery. The more severe the disease, the more likely it is to return. Taking birth control pills or other medications after having surgery may help extend the pain-free period.”

There are many inaccuracies to address in that statement. In reality, Endometriosis has lower recurrence rates if it is expertly excised. Unfortunately, this statistic goes to show how varied the skills are among gynecological surgeons.

The list of qualified surgeons is short because of the skill and cost required to do excision surgery. It is essential to come to terms with the fact that you will very likely have to travel for proper surgery. On top of traveling, it is also likely that insurance won’t cover the surgery. In my experience, this is understandably the most significant limitation for patients getting the proper care. It is horrible and quite unfair, but it is what it is until we make changes happen. Many individuals have multiple failed surgeries, costing thousands of dollars over time when it would be more cost effective to save money for a one-time excision surgery with an expert. If a second excision surgery is necessary, it is usually due to the presence of adhesions that form from previous failed ablation surgeries o missed disease. . Dr. Sinervo at the CEC has documented less than a 7% recurrence rate, as opposed to the ACOG’s 40-80% based on ablative/cauterizing surgery. As awareness increases, I hope more surgeons become interested in completing fellowship training for proper excision of Endometriosis.

Kate