A Letter to Providers from Two Endo Patients

What to Ensure Your Doctor Knows

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Published on October 31, 2015 by Nancy Petersen

How do I know if a surgery planned will be helpful? You have to spend time learning about modern concepts. You must know these basics:

Endo is multicolored. Nine other areas of the pelvis/abdomen are more frequently involved than the ovaries. The uterus is not the issue when it comes to endometriosis. It plays a big role in adenomyosis and dysfunctional bleeding but not endo. So, removing the uterus is not likely to help endo but may be helpful for other conditions. Nor does removing the ovaries help endo.

Your doctor must have the skills to operate in all areas of the pelvis. Does he or she remove deep infiltrating endometriosis? Do they deal with endo of the bowel, the bladder, the tubes, behind the pelvis (aka retroperitoneal endo), the diaphragm, small bowel, appendix, pelvic side walls, pelvic floor, peritoneal pockets? These details are critical to getting a good outcome. Many good surgeons also use consultants for bladder, bowel, diaphragm, or lung disease. Realistically most GYN’s do not have the certifications or skills to operate in all these areas, so when you start with limited skills you get limited outcomes.

Recently we saw a group of doctors put out an announcement that they knew about subtle appearance disease. Well, that is wonderful, but that is not the only issue to getting skilled endo surgery. Way too many doctors remove a little, then plan to “clean it up” with hormonal medication. Hormonal medications do not clean up anything. So, unless your doctor is committed and has the skills to operate in all areas of the pelvis, you are likely to not have the best outcome.

Likewise, using ablation (a heat source to supposedly destroy endo) is ineffective as a treatment approach. Many specialists in resecting areas previously ablated find evidence of carbon deposits on the extremely sensitive peritoneum and active glands and stroma of endometriosis directly below.

Once your doctor reassures you they can do all this, then ask around for others who have experience with those doctors. Then, at discharge, get your operative report, pathology reports and discharge summaries from the hospital. You will be able to read what was done or you may have to request them from medical records at your hospital once they are posted by the doctor.

For more information, see the links below:

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