ENDOMETRIOSIS: WHERE DO WE DRAW THE LINE ON COMPETENCE ?
Nancy Petersen
Co-founder of the first LAPEX program for the complete excision of endometriosis with David Redwine MD, Founder Nancy’s Nook Endometriosis Education, Facebook
Regularly among our 210,000 pts in Nancys Nook and the 1700-3000 monthly who arrive there are stories of classic symptoms being denied after a "negative diagnostic laparoscopy". What we discover is that the procedure lasted 20 minutes, only one access, pronounced uterus, tubes and ovaries are pristine, you do not have endometriosis.
While I am a nurse, I do know that a 20 minute diagnostic procedure cannot cover the pelvis and extra pelvic areas endo is known to be found within, and a declaration of no disease is impossible. In recent years, Professor Mabrouk, Cindy Mosbrucker MD, Andrea Vidali MD have all discussed a proper diagnostic procedure in nook for patients to learn from. They know for instance that endo of the diaphragm cannot be ruled out in its most common positions from a standard laparoscopy. A higher access point is required. Patients now are also learning a complete lower pelvic exam for endo cannot be done without manipulating organs out of the way, and searching bladder, bowel, pelvic floor, pelvic sidewalls, ligament, nerves, appendix, small bowel, etc.
So at what point do we begin to note that if surgeons do not know all of the symptoms*1 associated with endometriosis, do not know the evolution of color appearances of the lesions*, do not know the statistical distribution of the disease* and do not do an adequate preoperative work up to know who all needs to be in the OR before surgery ever starts, do we begin to ask why the patient is even being taken to surgery? Without command of the basics surgery will fail and often studies measuring medical therapy and surgery suggest the outcomes are the same. This fallacy is showcased by two things among our patients, when those who have been told they have no disease in the face of classic symptoms are sent on to more skilled care, disease is found, documented and removed. The second fallacy is that when these studies are done there is never any controls on the surgeon's command of the basics noted above and the study should be considered invalid.
The other issues are training, the MIGS fellowships are not standardized, and some of the leaders of these programs I have spoken with not only do not seem to have command of those issues, but have said they give little time specifically to endometriosis the most common gyn condition world wide as far as I can see.
These factors when the physicians and consultants do not have command of the disease specifics almost guarantee a failed surgery. You can't go after a disease in which you do not have full command of its nature and expect the patient to do well. So my question is why are these patients being taken to surgery, having uninvolved normal organs removed, disease missed, pts continuing in pain and then denied that they are still in pain being allowed? There should be standards of care, there should be limitations on who can care of these patients, there should be questions of competency where ever we see these behaviors.
NP
Ob/Gyn MD at Kaiser Permanente/ Endometriosis specialist
3 天前It is unfortunate what happens to so many women. Every day I see patients with typical symptoms of endometriosis and adenomyosis whose symptoms were ignored or glossed over and told to take ibuprofen. So many women where obvious disease was missed and allowed to progress while destroying any real chances for pregnancy. We do need to do better. When someone has pain we need to do our due diligence and find the source or sources of pain.
Treat the underlying cause of infertility? IVF alternative is Restorative Reproductive Medicine (RRM)
4 天前There are diagnostic tests in dev for this. Multiple actually. Which have true promise based on research? For patients and their clinicians alike, they offer alot.
Certified Grief Counselor Candidate | Camouflaged Losses | Grief Survival | Sponsor A Veteran | Suicide Prevention & Postvention Advocate | Author | Speaker | Theorist | Educator | MI Coach | Connector, Innovative Leader
6 天前Love this Nancy. Endo is one of the camouflaged diseases I discuss in my Human Camouflage theory. That section is about physiological camouflaging.
Psychologist & psychotherapist under supervision
6 天前Here in Croatia we don't have any quality control over specialists, so everything depends on the surgeon's popularity and influence in medicine circles. And most of the time there is not nearly enough overlap between quality and all that. So in the whole country we have no public surgeon which we can call specialist, but public insurance decided we have a few based on above mentioned criteria... How to even change such a system when the system doesn't see it as a problem?
Co-founder of the first LAPEX program for the complete excision of endometriosis with David Redwine MD, Founder Nancy’s Nook Endometriosis Education, Facebook
6 天前from a very skilled, knowledgeable UK advocate : semiotics_omnia “Do we really know what an endometriosis specialist is?” That is an interesting question. I do, I understand what I *believe* makes one consultant/surgeon/dr skilled enough to deal with this disease. I can list what I consider important but arguably with an enigmatic disease where there is little agreement on origin, progression or treatment modalities (or even common ways of describing some aspects) there is no general understanding of what constitutes a “specialist”. For me, someone who only deals with endometriosis may specialise but critically do they have a track record of success? We must make real, demonstrable progress regarding this disease, backed up by solid research before a shared understanding of what a specialist should be can be articulated. I await this day eagerly as it will be a turning point for care globally.