Best Endometriosis Blog 2016

Friday, May 2, 2014

Top Specialist speak out to Dr.Drew on behalf of Endometriosis Patients Worldwide


On April 24th Dr. Drew managed to really ticked off 179 million women suffering from Endometriosis as well as Interstitial Cystitis (IC) calling them "Garbage bag diagnoses" this sparked a huge outrage on twitter as well as Facebook. Top Endo Specialists and advocates from around the world took to social media to stand up for all of us suffering from this disabling disease. 

The male caller called in regards to his girlfriend but before he could even ask him a question Dr. Drew cut him off without even listening and said "Endometriosis & Interstitial Cystitis are 'garbage bag diagnoses' with no discernible pathology, given when we can't think of anything else, so we say, eh, it's this... This makes me wonder...was she sexually abused." 

If you missed his pod cast here is the link so you can hear it for yourself. https://www.youtube.com/watch?v=GUjVM-L6agU


Dr. Sinervo's response
 "As a gynecologic surgeon that specializes in endometriosis and pelvic pain, your comments regarding pelvic pain were very ignorant and uninformed. I have treated thousands of women with endometriosis, interstitial cystitis, and other conditions and their pain is real. In fact, it is the minority of patients that have a history of abuse, and their endometriosis is a condition that they were born with, becomes active after menarche, takes an average of 9-12 years to diagnose and is poorly treated by medicine as a whole, using ineffective medications to suppress the disease instead of excising the disease which offers a very high chance of success. When you see the destructive effects of this disease not only anatomically, but physically, emotionally, socially and limiting their ability to reach aspirations due to pain and infertility, you know that this is a real entity, and not something that needs a psychologist to treat. You should really do a little more research regarding a disease that can be very destructive and debilitating. I do 2-3 bowel resections a month for obstructive bowel endometriosis and 30 other surgeries a month for all stages of disease. You may have the longest running advice show, but you should know what you are talking about before you blurt out advice".



Dr. Nezhat
"It has been brought to our attention that it has been said that endometriosis is a “garbage diagnosis and no discernible pathology.” These are the type of misconceptions within the medical community that need to be dispelled. It is a disservice to millions of women all over the world who are suffering with pain, infertility, and organ dysfunction because of endometriosis. Endometriosis indeed has pathology and it is not a garbage diagnosis!
Camran Nezhat MD
Farr Nezhat MD
Ceana Nezhat MD
Azadeh Nezhat MD




Heather Guidone CEC (Centre of Endometriosis Care)
It is unfortunate Dr. Drew chose to use his platform and credentials to disseminate incorrect information and demean an entire population. It is evident he does not understand either endo or IC (commonly known as “Evil Twins”). Both in fact have “discernible pathology” indeed; neither is a “garbage bag dx.” To that end, I would be delighted to forward the show’s production team surgical findings, histological confirmations and operative photos by the thousands, each demonstrating presence of viable pathology; alternately, I suggest turning to any medical journal to review the case reports, articles and data therein, most of which are accompanied by supporting photographic evidence as well.

He clearly does not possess even a cursory grasp on the vast complexities of endo, a (very real) disease influenced by many, multifaceted genomic instabilities, genetic polymorphisms, epigenetic alterations, hormonal expressions and environmental factors. It is not a Somatoform Disorder. It is not a Conversion Disorder. Individuals with endo are not hypochondriacs. It is further obvious by his callous remarks he does not have experience treating the disease. He has never spent 9 hrs in the OR trying to save the reproductive organs of a young girl with severe endo, or operated on ‘frozen pelvis’ (a hazardous condition marked by extensive adhesions and significant fibrosis), nor attempted to surgically repair a dangerous intestinal obstruction caused by GI endo (previously misdiagnosed and left to worsen by physicians who said it was the other, so-called ‘garbage condition’ IBS), nor encountered renal failure in someone with ureteral endo, nor tried to repair lung damage due to pleural endo. Had he encountered any of these common scenarios, he would know endo is not only very much a legitimate concern, but represents a significant public health crisis.

The pain of endo is not psychogenic in origin, but related to very real alterations in central pain processes and proalgesic mediators characteristic of the disease. It is also linked to increased risk of comorbid conditions - including association with certain malignancies. Moreover, data has long demonstrated abuse is unlikely to be specifically and psychodynamically related. Indeed, the pernicious nature of abuse may promote chronicity, but is not the origin. There are 176M individuals struggling with endo; to imply or assume - and then broadcast - each was abused and therefore suffers from a garbage bag dx is implausible at best and professionally irresponsible at worst. Such assertions serve only to further invalidate those suffering, most of whom have already gone an average of nearly 10 yrs across more than 5 drs who failed to properly diagnose and treat them, instead saying it was ‘in their head.’ If pts were not dismissed repeatedly by drs who do not possess capability to effectively diagnose and treat, they would not be constantly seeking care across multiple consults – or as Dr. Drew calls it, “traumatically preoccupied.” It is more fair to say the problem actually lies with physician ignorance and ongoing, fragmented, poor patient care - as opposed to assumed abuse history.

Endo is a leading cause of pain, sexual dysfunction, bowel, bladder and other organ impairment, infertility, significantly reduced quality of life and much more. It is the 3rd leading cause of gyn hospitalization in the US and considered one of the top contributors to infertility. It also represents a significant socioeconomic burden, with associated costs in just the US alone estimated near $119 billion; further, it specifically accounts for a significant loss of productivity of nearly 11 hrs per woman/per week among those affected. 72% of those living with endo have reported significant impairment of daily life. The obvious knowledge deficits in the healthcare setting – i.e. those evidenced by Dr. Drew - demonstrate the critical need for improved education among providers at all levels. The enduring lack of accurate knowledge evidenced on his show contributes not only to delayed intervention and effective treatment, but dismissed the reduced quality of life, dyspareunia, infertility, compromised academic and professional opportunities, impaired sexual and physical functionality, losses in productivity and vicious cycles of repeated medical and surgical therapies which characterize the disease.

Rather than using his show to publicize dangerously incorrect information to his broad audience and further drive home stigmas, I strongly encourage Dr. Drew to avail himself of the abundant literature on endo & IC, as well as current data specific to sexual abuse and endo, so he can better provide listeners with correct information. Individuals with endo have long been stereotyped, dismissed and ignored. They deserve far better.

May I suggest starting with an apology.



From the Endometriosis Research Center

"86,240 unique viewers on the posts re: the Dr. Drew Pinsky debacle since Friday morning. That's a lot of awareness about endo! We are encouraged to see the near-total unity of the global endo community, endo doctors, endo and IC organizations, and loved ones of those with the disease(s) banding together and standing up to Dr. Drew, and more recently to his wife who has been engaging tweeters with combative, demeaning replies. He is allegedly to comment on this matter on his show this evening (Sunday), though he has already denied even saying the comments (despite the fact that they are available on tape). Keep supporting one another and keep your voices out front. This IS a real disease and every single one of your stories MATTERS. We don't need a celebrity doctor to tell us that."



Dr. Cook
"Dr Drew : I am Dr Andrew Cook, Medical Director of Vital Health Institute. I have devoted over 20 years to the successful treatment of women with Endometriosis and Pelvic Pain. We have studied over 1000 patients and have accumulated data including extensive symptomatic study, social history, pathological results, recurrence rates, and overall outcomes post treatment. Please see our website at www.vitalhealth.com. I would like to address your misinformed comments on the diseases of Interstitial Cystitis, Endometriosis, and Pelvic Pain. These conditions are not "Functional Disorders" as you describe. You state these diagnosis "aren't discernably pathological" and call them "garbage bag diagnosis" used "when you can't think of anything else." Your statements are inaccurate and hurtful to the vast population of women affected by these diseases. We have clinical data and pathologically proven evidence on thousands of patients supporting these very real diagnoses. Particularly disturbing is your misinformed position declaring "unexplained pelvic pain" as a "somatoformed dissociation" resulting from a history of sexual abuse. Though a small minority of patients in my study revealed a history of sexual abuse, the vast majority, 98%, did not report a history of abuse. To suggest that 176 million suffering from Endometriosis, IC, and Pelvic Pain need to see a "Trauma Specialist" is not helping women find the needed surgical help for their pathologically proven disease. I would like to offer you a copy of the book I wrote on endometriosis last year if you would provide me with your correct mailing address. I would also be glad to speak with you about endometriosis and discuss the current medical evidence on this topic. Please contact me either via email at cook@vitalhealth.com or through my office at 408-358-2511."
World-Renowned Endometriosis Specialist in California
Dr. Andrew Cook - Recogized by many to be one of the best endometriosis specialists and surgeons in the world. Author of 'Stop Endometriosis and Pelvic Pain.' Located in California.
VITALHEALTH.COM"



Dr. Seckin plus live audio of response
"I would like to apologize for my delayed response to the pejorative statements made claiming endometriosis is a#garbagebagdiagnosis yesterday, but I just completed a ten hour surgery on a woman who apparently did not even require my expertise nor that of my surgical team—including a urologist and a colorectal surgeon who removed the lesions obstructing her bowel and right kidney. I guess once the slides of the multiple lesions we removed that the pathologist will study and definitively state are endometriosis are then reviewed, we can all breathe a sigh of relief that they are merely a figment of our imagination. The radiologists will be humbled that the images they studied were wrong as well. What a blessing to the one in ten women who are suffering with this disease to know that it is NOT real, that if they could just find the right therapist that all would be right in their world. The pain, the missed and wrong diagnoses and treatments, the infertility, the fear of the known association with ovarian cancer, the average ten years of needless suffering until the diagnosis of endometriosis was finally made would all disappear!
To all the women out there, your pain is real.#killercrampsarenotnormal





Dr. Cindy Mosbrucker
"Hi, this is Dr. Cindy Mosbrucker, a leading endometriosis surgeon in Gig Harbor, WA. I spent 2 years working with Dr. David Redwine, the father of endometriosis excision surgery, learning the difficult but rewarding skill of surgically removing endometriosis in women. I realize you have received thousands of messages from women with endo, and by medical professionals as well documenting the facts around endometriosis, its symptoms, genetics, treatments, etc, but I would love for this to open a dialogue about endometriosis. It is truly a debilitating disease that affects millions of women, and is misunderstood by most physicians. Those of us on the front lines of caring for women with this disease welcome the possibility of having a discussion on the air about optimal treatment for pelvic pain, including endo, IC, pelvic floor myofascial pain. There are certainly factors that can alter pain perception and make any disease feel more painful in some patients, especially those with a traumatic history, but sexual abuse in NO WAY causes endometriosis, it is a genetic disease. We need to educate the medical community as well as patients with endo about the need for surgical excision rather than hormonal suppression, and the need for timely diagnosis rather than our current poor standard of waiting 5-9 years before a diagnosis. Please help us correct the misinformation surrounding endometriosis by using your platform for good. Thank you very much."




I never expected an apology from Dr Drew his arrogance was enough for me to lose all respect for him and what he stands for. However during all this Endometriosis got out there and that is all we have been trying to do since anyone who talks about the disease seems to have a different interpretation of what it is and its so confusing to many people especially those with Endometriosis and IC. 

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