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

http://www.youtube.com/watch?v=gp6jS4wzkdo&feature=youtu.be

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. 

The Toronto Endometriosis Symposium 2014

First off I just want to say this symposium rocked. The speakers were amazing and they all brought something to the table. I don't get to go the meetings in Toronto often but I was lucky enough to attend the 2012 symposium to meet a bunch of these amazing ladies that have done an amazing job at putting these together with very very limited funds. How they do it I don't know but I think Canada definitely needs more funding for this Network from the government as well as Endosisters all across Canada. If we want to be heard and make a difference this is the place to start.

My phone died so I am going to use some of the pics that Ten tweeted during the symposium so you can see who was there.

To start off the symposium we had Jan Silverman who I adore since the day I first heard her speak in 2012. For 20 yrs she worked as a Clinical Program Specialist - Infertility Support and Education Program at the

Women's College Hospital in Toronto in which was closed down in 2012 due to supposed budget cuts. Read more about her passions here

Just to have someone in the room has been around with block with Women who suffer with Endo or infertility is amazing. She has such heart and passion for what she does and the city of Toronto is so blessed to have her in their midsts. Her words are so clear "YOU ARE NOT ALONE ON THIS JOURNEY"

Next up was my favourite Endometriosis Advocate from the CEC Heather Guidone. Just her presence at the symposium was powerful. She has been advocating for over 20 yrs (If I am not mistaken) and is a support all throughout social media. She comes with so much information and insight that is was such a pleasure on its own to finally meet her yesterday. She discussed how everyone is effected not just the Endo patient and how Endometriosis is a public health crisis and at this day in age this should not still be happening. 

Next up was Dr. Wong a gynaecologist in Toronto he spoke about how to be specific with your pain when explaining it to your doctor (sharp, numbing, and where) and the journey through the doctors offices. One thing that I found that I completely did not agree with at all is that he said "We use Lupron to diagnose Endo at times" Big fail in my eyes. This is where Canada is lacking and it was quite apparent because this is the normal run around you get. He also said that all Endo sometimes can't be removed because some microscopic parts will regrow and I disagree with that as well as a good surgeon can see all Endo and knows what to look for. Don't get me wrong I don't think he is a bad surgeon however it shows that Canada has a long way to go in treating and treatment for Endometriosis patients. He did mention "A pelvic exam should not be painful" This is what I found funny because every single exam I have ever had hurt and why did no one pick up on this? During this time there was discussion about Medical Marijuana that you tell that Dr. Wong was not comfortable talking about it but the room of patients sure wanted to. 

Next up was Pamela Frank a Health Solution Specialist, a licensed Naturopathic Doctor, women's health & infertility expert. She discuss diet and what we eat such as Meat, Dairy PCB's in Fish, and dioxins being linked to Endometriosis through those foods and also how little research has been done with the Endometriosis diet.  She talked about how Telomerase was higher in women with Endo, something I will need to read up more on, how gluten has been associate with pain in women with Endo. She recommended a site called http://www.kidsafeseafood.org/

Next up was the guy everyone was waiting to see and to hear from Dr. Sinervo from the CEC in Georgia. He talked about Bowel Endo and how often it is mistaken for IBS making it more difficult for patients to get the right treatment done because unless the bowel is invaded with Endo otherwise a colonoscopy will show nothing and the patient is then labelled with the IBS title. He asked how many people were told they had IBS and almost everyone in the room put up their hands. He talked about how doctors need to start listening to their patients and showed some video's of Endo from the bowel being removed. There are limited doctors who excise Endo and that is the gold standard but there are only a limited amount that can actually do it and more need to be trained. 

Next up was Dr. Orbuch and although I have heard her name I didn't know much about her but I was completely and utterly fascinated by what she talked about. She discussed co-morbid/Co-existing conditions that go hand in hand with Endo including IBS, Vulvodynia, Lupus, Fibromyalgia, TMJ, Chronic Fatigue, Celiac Disease, Interstitial Cystitis. She talked about how younger patients endo are some times clear so can be often missed by an unskilled surgeon. She said that cauterized Endo does not grow back it means that it was never fully removed properly and that 50-86% of Endo patients also have IC. She talked about how low dose valium taken orally or vaginally can help with Endo and IC and also addressing Pelvic Floor dysfunction in all patients with Endo that are still in pain. 

I wish that she could have touched more on the PFD but time was limited. I will post back a link once I find it that she gave me in regards to the co-existing disease as I know I read it somewhere. 

Next up was Tara McKee who is a Sex educator/counsellor, workshop facilitator & psychotherapist. Gestalt Therapy trained and has her own private practice. She talked about how sex doesn't have to mean full penetration and it could be oral, touching, massaging etc. Many women who have Endo suffer with pain sexually even when climaxing so she gave different ideas on how to bring the "sexy time" back into a relationship. I thought she was great, made the room laugh and she made good points. 

My over all experience of the symposium was great. I am so happy that I could attend and for those who missed it I will post soon the You-tube link once they have it up. 

For me what I learned the most well more of because I do believe this is key is that every Endometriosis patient needs a group of doctors working for her such as a GP who is educated and understanding, a good Endo surgeon to excise the disease, Physiotherapy, Psychotherapy, sex therapy etc. There needs to be a united front involving patients like us because it is so hard to know what to do and how to avoid ending up in one medical room after another when it is completely necessary.  

OHIP Turns a blind eye to suffering

I wanted to write about an article that I had read not too long ago and since I am in the process of fighting for out of country surgery it would be good to talk about.

Here is the link http://www.lfpress.com/news/london/2012/01/20/19274441.html

The same surgeon who is being scrutinized is the surgeon that operated on me in 2007. He refused to operate on me and wasted my time for at least 2 yrs and put me on Lupron saying that if the fluid in the cul-de-sac went away it was Endo and he would operate. Well I went back to him after the 3 months of hell and he didn't do an internal ultrasound just told me it wasn't Endo because I was having pain still. He is ridiculous. He also knew that I was going to the Wasser Pain clinic and told me the surgeon there was good and that he trained her and if she agreed to do it then he would do it. Does that even make sense to anyone? So I wasted 2 yrs taking days off work to go to these appointments only to be told I had Neuropathic Pain Syndrome not Endo and sent me off to a baby doctor who botched my surgery.

That being said I am not going to get a referral from this surgeon as the article says "Only one specialist held an open door to her care, a Canadian schooled almost entirely in Ontario. But Dr. Ken Sinervo had committed a Cardinal sin as far as OHIP was concerned -- he offered life-changing surgery outside the country in Atlanta, Georgia."

How is giving the patient the best care a Cardinal sin? When will Canada wake up and realize that we do not have the surgeons available to even come close to providing quality of life?

I am filing my appeal today so we will see how this goes. It doesn't look promising and it becomes more depressing as I think about how my future will be. I have the top surgeon who won't operate, another who botched my surgery and said it was too complicated and closed up and now I am left with no one, how is that fair?

Rejection #2 for out of country surgery.

I was so saddened to pick up the phone this morning to hear some young female government worker talk to me like I was some piece of trash. She told me my case was rejected and pretty much said " You sent this information again without an Ontario Specialist signing off so its DENIED AGAIN!" in a snotty ass tone.

I am not an idiot. I understand that I need an "Ontario Specialist" to sign off on this but we don't have many here in Ontario and the one that operated on me will not write it, that I can guarantee. Dr. Sinervo was trained by this doctor so now that puts him in the hot seat with OHIP, like hell he is going to do anything to support us females with this disease.

The one thing that bothers me the most about this doctor is that when there was an article about this female that went to Dr. Sinervo for surgery because there was an 8 month wait for an appointment with him and another 8 month wait for surgery he pretty much through all of us Endo sufferers under the bus by saying its not a life or death disease!

Actually yes sometimes it is, when it comes to renal failure, bowel obstructions etc. We have lost the quality of life, is that not important at all? Most women have lost their jobs due to the disease itself as there are so many symptoms or it has effected their jobs and are being punished for either taking too much time off for appointments, surgeries, and for being in chronic pain. Some have even lost their jobs. I am just lucky I have 18 vacation days and that I have been with this company for a long time. It helps when I need those days off. However I can't even talk about this disease to anyone at my work higher up as they are all men. And when I have tried the conversation always makes the man feel uncomfortable and I feel ashamed. So unfair.

So here I am with no surgeon, in pain with so many complications and no one to help me. I pay taxes for my health care and I go to work every single day and bust my but in pain or not and the government refuses to even listen. Now is the appeal process. This ought to really drain me on top of everything else going on in my life.

I am sad today. I am sad that I live in a country where you pay for healthcare and yet you don't get the skilled surgeons to help you. I am sad that this disease is so hush hush because its gynecological and God forbid we talk about vaginas, blood, uteruses, bowel movements etc. Well hey this has been my prison and its how I cope and survive. How do you even make it through the day knowing that no one can help you and your own country who has this choice to say yes or no refuses. UNREAL!!

Heather from CEC in Atlanta has been amazing and I want to give her a shout out because she has been with  me every step of the way and if I am mad she is double mad. She understands the pain she gets it, she knows what we go through. She is amazing.

Hear is hoping my appeal process doesn't cause me more stress, depression etc because that would just cause a major flare for me and I don't think that I could handle one right now.