ENDOMETRIOSIS: a gyn questions why patients are drawn to Nook.
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
NANCY'S NOOK ENDOMETRIOSIS EDUCATION
Nancy Petersen
The attraction to nook
A gynecologist recently asked me why I thought patients were attracted to our Facebook page. My answer was a little bit complex, but it starts with aside from the expert skill of many of the surgeons, we try to identify who can actually remove all of their disease, I think one of the biggest attractions is that the physicians and their staff generally listen carefully to patients. Gynecology has a bias about what the symptoms are, and this doesn’t fit with what patients are experiencing a good deal of the time. The minute the patient’s complaints go outside that bias physicians seem to quit listening. Most patients will come back to our group when seen by a true expert and say you know what I could hardly get through the appointment, she listened to me, he listened to me, he didn’t deny what I was experiencing, I was over whelmed with emotion. Because the disease is poorly understood, and because it’s symptom profile is much brighter than what is typically taught, patients get gaslit very quickly when they start talking about shoulder pain, or bladder, pain, or bladder infection type symptoms with no bacteria, with exercise induced tachycardia, along with chest pain,(both symptoms of pericardial endometriosis) with bleeding from the bowel. You can’t believe the number of patients have been told they don’t know the difference between a period and bleeding from the bowel. You know really, how obnoxious,? We know that endometriosis on or near the bowel or on or near any organ can create bleeding in adjacent areas. When a patient explains, they have bleeding from the bowel, that needs attention whether it’s from bowel issues unrelated to endometriosis or related to endometriosis near the bowel. To dismiss it out of hand is incomplete care.
I further explained to this gynecologist that what has happened with evidence based patient education and crowdsourced advocacy and education is that many patients have ended up with more information about endometriosis and it’s presenting symptoms than most gynecologist have. Something Andrea Vidali MD pointed out a couple years ago that he noted in the patients he was seeing. So when gynecologists express great skepticism about what the patient is telling them, two things happen, they destroy the credibility with the patient across from their desk , and they perpetuate misinformation and lack of good information about endometriosis. Gynecologists who have a sense of science would be curious about why would a patient be developing chest pain with exercise or tachycardia with exercise?(both are associated with pericardial endometriosis. And sometimes you’ll find a small accumulation of fluid between the pericardium and the muscle). Patients know this stuff so when the doctor denies that it’s even a symptom or even an acceptable symptom or acceptable for investigation, along with other symptoms elsewhere, it really destroys a relationship with the physician very quickly.
One of the challenges the gynecologist placed with me why am I so quick to suggest second opinions? The reason for that lies in the fact that most patients come to us with multiple treatment failures having tried all gynecology has to offer and firmly believes in, and none of that worked. We reach a point where we don’t want patients to continue to have one treatment failure after another as it’s extremely discouraging, expensive and very difficult to live with that level of pain/infertility as well as the harm from gaslighting. So when a gynecologist denies all of the symptoms of patients are having that are classic endometriosis, and then offers more treatment that failed we see that patients really need to better understand that their medical care is not meeting their needs. So we will recommend second opinions under those circumstances, hopefully with someone who has full command of the necessary aspects of the disease that will lead to successful treatment** . We don’t desire to alienate people who provide for patients, we desire to make an awareness that what we are doing for patients, generally in gynecology isn’t working and that we have to be more open to what patients are experiencing and curious enough to investigate, and savvy enough to refer those patients to somebody who has the skill to surgically remove their disease without harm. It’s not uncommon for patients to come having had a complete hysterectomy, sometimes ovaries out as well and left with nerve pain in the pelvis. Marc Possover MD from Switzerland has repeatedly reached out to the world of gynecology about nerve injury, both from disease and from interventions we need to be more savvy. It’s time for a change and the changes need to happen at the university, in the clinics in the MIGS programs, in the mentoring we do with new providers.
In the last 18 months, many of the 3500-4500 new patients coming to Nook each month from around the world, are seeking information on the impact of endometriosis or possible silent endometriosis on conception. Many of them have had one failed IVF transfer after another, struggling with grief, financial impact and gaslighting because of the failures. I have seen as many as 15 failed transfers with no investigation as to possible reasons. Once endometriosis is considered many in the field of fertility/OB/GYN tell patients surgery risks their fertility. Indeed poor surgery does, but expert surgery is producing results where none was thought possible. (See published references below)
Other areas of concern include the general mythic belief that endo is a disease of reproductive aged patients. In fact it occurs through out the spectrum of life, even the literature noting it’s presence in infants who died for other reasons, pre-teens, teens, reproductive aged patients, post menopausal and aged patients in their 70’s and 80’s. The bias dismisses patients in severe pain from adequate intervention and again they or their parents turn to social media desperate for help as symptoms fall on deaf ears. Patients are repeatedly told they will need one surgery after another and yet in skilled surgical hands recurrence rates are quite low. We have many patients who had expert excision decades ago, who remain pain free, some having had surgeries for other reasons and were found to also be endo free.
We ended the discussion with the physician saying you know it’s unique and a bit shameful that some of the most valuable and reliable information for patients is found in a social media facebook group. It was a respectful discussion, with compassion for what he heard about the journey these 225,000 patients have been on, most failing to find relief, desperate enough to reach out to social media for a chance to restore the quality of their lives. We are grateful that we have the support of many leading experts in the field, and we thank them for their support.
NP
** key physician factors in success in our patients’ experiences: ability to listen carefully to the patient, curiosity about symptoms so they are investigated, true symptom profile, what endo looks like and how it changes over time, statistical distribution of the disease (patients are commonly told they have pristine uterus tubes and ovaries and do not have endo, these are statistically the least frequently involved tissues) adequate preoperative work up so that all the skill that might be needed will be in the OR (urology, colorectal surgeon, thoracic surgeon and expert gyn based on symptoms and findings at work up)
Fertility
Evolution of Color Appearance of Endometriosis
Distribution of endometriosis by age groups
Endometriosis Persisting after castration
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1moGreat article. I’m so glad you wrote this! 🙌
Student at Middlesex Community College
1moBecause the average OBGYN is failing endometriosis patients and ACOG has deliberately neglected us. You and the Nook saved my life and so many I've sent your way.
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1moYour advocacy, expertise and genuine compassion has been such a gift to so many, myself included! So thankful for your teaching!!!!
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1moThanks for being such an advocate! It should be criminal for doctors to perform surgeries they are drastically unqualified for.