17 Questions to Ask an “Endometriosis Specialist”

December 11, 2020
Posted in Surgery
December 11, 2020 april

17 Questions to Ask an “Endometriosis Specialist”

I’m going to start this article with a spoiler alert of sorts.

Sadly it took me many years and one bad burning surgery with a cautery iron to realize there is NO SUCH THING AS ENDOMETRIOSIS SPECIALISTS!

I’m sorry to burst your bubble but they’re as real as Santa Claus or the Easter Bunny.

I know shocking isn’t it?

It turns out my terribly outdated medieval surgery in 2013 was done by an “ENDO SPECIALIST” who was simply an old school OBGYN who simply called himself a “specialist” for marketing reasons. You may now be asking the question I had when I realized this for the first time…

“Well how is that legal and why hasn’t he been stripped of board certification by now for such poor treatment of women?”

The long and short of that answer is ACOG. ACOG is the medical board that oversees OBGYNs here in the US and they don’t have a subspecialty for endometriosis (despite numerous advocacy petitions) which means:

  1. There is no certification for endometriosis specialists
  2. Endometriosis Specialists simply don’t exist and anyone can call themselves an “Endo Specialist” despite their skill sets or treatment methods (or lack thereof).

As a quick side note this article is mostly about how to interview an endometriosis surgeon for a better understanding of other endo specialists and if they should be a member of your care team or not read this article HERE.

Now there are competent endo surgeons in the world who have devoted their practices to serving women with endo and have learned how to properly remove the disease with hours of training in wide excision. They can be difficult to find and skill sets vary WIDELY. Sadly many of them are lost in a sea of Docs who are not up to date with endo research/treatments and have no idea how to effectively treat endo or help put it into remission.

This is why in my support group I frequently teach women how to interview an endo doc and to avoid blindly believing any list of doctors as NONE of them currently are compiled or credentialed by an UNBIASED peer reviewed committee with standards of treatment (as they should be if endo were a true recognized subspecialty).

To help you on your quest I created a page for the Google Map of Endo Surgeons. This map was originally created by Dr. Redwine (an early pioneer in wide excision surgery) and Libby Hopton, an amazingly brilliant endo advocate. It has since been updated by me to keep it as current as possible.

I encourage you to remember this is not an all encompassing list, anyone on the list must use wide excision surgery but skills and treatment philosophy vary widely.

The best course of action is to do research and learn to interview doctors for yourself so you can find the best match for your case.

Here are some interview questions to get you started. For an in depth video explaining the importance of the questions join our support group and checkout the video on the questions HERE.

One more tip before you print the list and go… I highly suggest interviewing at least 3 surgeons when considering surgery. 3 is a magical number that will give you perspective and a good number of options.

  1. How long have you been doing endometriosis surgeries and how frequently do you perform surgery? (endo specialists do high volume surgeries weekly and don’t deliver babies)
  2. What type of surgery do you do? What techniques and instruments do you use? 
  • Are you able to perform my surgery laparoscopically?
  • How many incision sites will be used?
  1. Do you treat both superficial and infiltrating endometriosis?
  2. What proportion of the surgery will be performed via wide excision?
  3. Will you be doing my surgery, or will a colleague or junior surgeon be performing it under your supervision?
  4. Will you photo and video document the surgery? Can I have copies of my surgical photos and video post-op?
  5. Do you use near contact visualization of disease and are you familiar with the different appearances of endo up close (clear, dark, pigmented, abnormal vascular patterns, etc.)?
  6. Can you remove disease from delicate structures or what will you do if you find it on my bowel, ureters, bladder or diaphragm? 
  • If you leave disease behind, will you photo document it so I can have records of unremoved disease?
  1. What are your views on bowel disease, and do you have surgical privileges to perform bowel surgery or a bowel surgeon on call?
  2. Will my organs be preserved or under what circumstances would an organ be removed?  (make sure you read ALL consent forms before signing and know that hysterectomy is not a cure for endo, that’s a lingering myth in women’s medicine an article for another day)
  3. What do you do to prevent or reduce the risk of adhesions?
  4. Will all areas of disease removed be sent to a pathologist for confirmed diagnosis?
  5. What are your surgical outcomes? 
  • What can I expect based on outcomes you’ve had with previous patients with a similar presentation of disease? 
  • What are your complication rates? 

(endo specialists track patient outcomes and are happy to share both success and complication rates)

  1. How long can I expect recovery to take in my case?
  2. What is your office policy on post-op care and follow-up?
  3. If pain continues after surgery what other treatments do you have to offer?
  4. What is your office policy on insurance, will you assist me in the process of obtaining coverage or appeals? 

Good luck on your doctor search endo warrior!

*Some questions adapted from Cook, A., Hopton, L. and Cook, D., 2015. The Endo Patient’s Survival Guide. 2nd ed. Los Gatos: Femsana press, p.26.