BLOG #6 – QUESTION: HOW SHOULD I FIND A TRUE EXPERT TO TREAT MY ENDOMETRIOSIS?

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Relative to most physicians who have not had gynecology-specific advanced training (such as an ‘Ob/Gyn’ residency), all gynecologists should be considered as general experts in endometriosis care, but with varying degrees of experience. Here are some hints to help you find the expert among the experts:

Start by doing your research!

  • If you know women who have been treated for ‘endo’, ask them about their experiences with specific doctors.
  • Google “‘endo’ experts” in your zip code, state, and geographic region to establish a list of possibilities.

Visit on-line ‘endo’ sites such as:

Acquaint yourself with valuable ‘endo’ advocate resources such as:

  • Nancy Peterson & Nancy’s Nook for Endometriosis on Facebook
  • Endometropolis on Facebook
  • World Endometriosis Research Foundation on Facebook
  • caseyberna.com
  • salliesarrel.com
  • EndoIreland on Facebook

Ask your regular gynecologist if he/she knows of anyone in the area specializing in treating patients with endo. Be sure that they understand that you are seeking to be treated by what we term LAPEX – Laparoscopic Excision, the gold standard, if that is appropriate for your situation.

Look for gynecologists demonstrating evidence of advanced surgical training.

  • Member of the AAGL (formerly known as the Association of Gynecologic Laparoscopists)
  • Certified as ‘ACGE” by the AAGL
  • Certified as ‘COEMIG’ (Center of Excellence in Minimally Invasive Gynecology) by Surgical Review Corporation
  • Establish a list of prospective doctors to evaluate further

Unfortunately, a broad and vastly mistaken assumption exists that all surgery for endometriosis is performed by surgeons of similar experience and skill. This completely overlooks the wide disparity that actually exists and does not address the issue of completeness in removing all disease at the time of surgery, ignoring the excellent results of truly skilled excisionists with adequate experience in recognition and total resection. Finding a true specialist can be critical.

When choosing your physician, consider the following:

  • Do not be afraid to see multiple doctors. The time and money that you spend will be rewarded in the end if your ‘endo’ is successfully treated. Traveling for appropriate ‘gold standard’ treatment is common because referral centers and/or true endo specialists are not found in every state.
  • Look for a doctor that is interested in you and will spend the time you need answering your questions. If you feel that your doctor is too busy, he/she probably is.
  • Make a list of questions that you would like answered by the doctor and/or his/her staff in order to help your selection process. See my suggested list of questions below to select the ones that you believe are appropriate for you.

Dr Albee’s list of questions intended to help you find the expert among experts:

  1. Do you prefer to treat ‘endo’ patients by surgically excising the disease – or by suppressing the disease with drug therapies?
  2. Do you believe in complete excision of all ‘endo’ in most cases?
  3. If you believe in surgical excision, do you remove all abnormal peritoneum or just what you think is ‘endo’?
  4. If you believe in surgical excision, can you do it Laparoscopically (this is ideal)?
  5. Do you send all tissue to the pathology department for evaluation and confirmation?
  6. How many patients have you treated by surgical excision in the last 6 months? (high volume is important: 0-2=small experience base, 3-12=worth considering, 13 or more=great experience and dedication)
  7. If you find invasive disease involving the urinary bladder, bowel or ureter, how do you proceed? (‘stop and refer to specialists’=acceptable, ‘stop and organize team to accomplish removal of all disease’=better, ‘proceed to treat the areas using available specialists on-call’=best)
  8. Do you provide your patients with complete record copies including operative reports, pathology reports and photographs?

Knowledge is power and when it comes to picking your doctor, deciding whether or when and which surgery is right for you, fighting for excision and adopting practices and lifestyle adjuncts that you can do for yourself as a partner in your own care, you are your own best advocate.

Stay tuned for Dr Albee’s thoughts about alternative medicine approaches, palliative measures, nutrition and lifestyle for the ‘endo’ patient!

Disclaimer: any and all material(s) presented herein are offered for informational purposes only. Such material is not intended to offer or replace medical advice offered by your personal physicians or healthcare professionals. No information herein should be considered as party to any doctor/patient relationship. All contents herein are © copyright by Robert B. Albee, Jr., MD except where otherwise explicitly noted. All rights reserved. This material may not be reproduced or utilized in any form, including electronic or mechanical, photocopying, recording, or by any information storage and retrieval system except for personal or teaching use with prior permission. Thank you.

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