Progress in Endometriosis

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New ideas take hold slowly in medicine, unfortunately.  A former assistant professor of neurology at Stanford once told Dr. David Redwine, the father of Modern Concepts in Endometriosis Care, it will take 30 years for your ideas to take hold.  What I did not understand is, taking hold does not mean conversion.

So the ideas developed in Modern Concepts, are taking hold. There are somewhere less than 100 gynecological surgeons who have been identified as doing effective endometriosis surgery in the US.  A Texas surgeon, John Dulemba MD, thinks maybe that is true worldwide.

Is this means for despair?  Well, yes if you are a person needing skilled removal of your endo. On the other hand, 30 years ago there was one doctor identified as doing skilled excision. Shortly others began showing interest in finding better outcomes for their patients.

I once had a discussion with Spence Meighan MD, the Director of Medical Education at Good Samaritan Hospital and Medical Center in Portland Oregon, about why doctors embraced new ideas so slowly.  One observation he had was that, only half of what we teach medical students in medical schools was accurate. The biggest issue is that we do not know which half.  We should be teaching more art of medicine and science of inquiry.  Not assuming as they come out of medical school they are now prepared to practice medicine. What they are prepared for is to begin to listen, look, inquire and research what they are unsure about.

Other reasons endo excision has been slow to become main stream are many.  For one, if you have a busy Ob/Gyn practice, taking hours per case in the OR plays havoc with office and surgery and delivery schedules.  A surgeon simply does not have the time in a general Ob/Gyn practice to take the time for each endometriosis case that removal of disease requires.

Another reason could be if gynecologists are not keeping up with the literature, they still see excision of endo as “out there”.  My sister-in-law recently went to a doctor who mentioned endometriosis to her and that if so she would need a hysterectomy.  When she asked about excision, the response was that is fringe therapy.  “Fringe Therapy”?  Well, if you have multiple laparoscopies, multiple medical therapies, been told to get pregnant, then told you need a hysterectomy and none of that worked?  Tell me which is fringe therapy?

So this leads to another reason excision may be slow to be embraced.  If you take care of endo in one or two surgeries, (Meigs, Redwine, Albee, Sinervo, Robbins, all have positive outcomes in one or two surgeries), then the loss of income from repeated laparoscopies, office prescribed medical therapies, pregnancies, and hysterectomies trying to treat endo becomes significant.  On the other hand, if you move away from scarcity thinking, and realize we have over 8.5 million women in North America needing effective surgery and over 176 million worldwide, there is no scarcity of patients needing effective surgery.  It becomes a huge opportunity and it is quite gratifying as well, because patients do so well as surgeons ability to find, and remove disease results in very happy patients.

Endometriosis pain is on par with acute appendicitis.  Patients develop peritoneal signs and symptoms, (bloating, acute abdominal pain, nausea, quiet bowel, sweating, paleness, sometimes fever, anxiety etc etc) something every medical student and nursing student has been well educated to look for in patients.  But in endo patients we can somehow say, “oh it’s just her period”.  If you think about the degree of pain associated with peritoneal inflammation, the least we can do is be sure that the patient has adequate pain relief until disease can be resolved.

What we fail to recognize in untreated endometriosis, is that this disease restricts potential, sexuality, child bearing, ability to work in many cases, and general constricts life down.  I have seen many, many women permanently relieved of their pain through excision of painful implants.  Returning to life as a sexual being, working woman, new mother often, they soar as never previously thought to be possible.  They are very grateful people.

It is unconscionable that we turn patients with acute abdominal pain away to suffer without assistance.  We would not do that to someone suffering pain from organ perforation, blunt abdominal trauma, or appendicitis.  The mechanism (inflamed peritoneum) is the same, relief of pain should be comparable.  Chronic use of pain medicine does not lead to abuse, it leads to relief, perhaps enough relief that she can get off the couch and turn the heating pad off.

Endometriosis is not a fatal disease, however, despair can be.

 

Nancy Petersen RN (retired) graduated from Tacoma General Hospital School of Nursing in conjunction with University of Puget Sound. She spent 40 years in active nursing and the time since retirement as a volunteer patient advocate for endometriosis patients. In 1984, she literally stumbled into a lecture Dr. Redwine was giving about his research on endometriosis. In time, she came to understand it was a game changer for women with endometriosis.

She along with David Redwine MD established the nation’s first comprehensive conservative surgical treatment program in Bend Oregon, which quickly developed an international patient base.

She spent 12 years traveling and lecturing on Modern Concepts in Endometriosis which arose out of Dr. Redwine’s published research. She consulted with Dunwoody Hospital in Atlanta on the establishment of Dr. Robert Albee’s endometriosis treatment program, The Center for Endometriosis Care.

She volunteers her time on Facebook on several pages related to education and discussion of endometriosis and serves as an advisory board member to the Endometriosis Research Center.

4 Comments

  1. Hi Nancy, best thanks for this article. I’m the husband of à woman who has this painful disease and unfortunatly we are on one of the worst country for this : France. I searched sincères many years surgeons whit abilities on excision… with no success… i’m waiting to bé accepted in your facebook discussion group but if you have some surgeons names near France or around i Will be very grateful of it. Thanks again for the time passed to help all those suffering womens.

  2. February 12, 2016

    Hello Nancy Peterson ….

    Could you please provide me with a copy of your current list of Endo Physicians ASAP, as
    I am trying to locate top quality care for my daughter’s Endometriosis.

  3. We maintain a list of doctors that patients appeared to have effective surgery outcomes, It can be found on Facebook unther Nancy’s Nook Endometriosis Discussion and Education,

    This list I think contains 30 names or so, some beyond the US. We ask that folks considering one of them, ask for references in the room/discussion board. We know most are very good at what they do, some are more recently added and we do not yet have a good track record for them

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