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.  

Hospital ER Treatment and Endo

I feel that I need to discuss this as I was really bothered when I heard another Endosister tell me that an ER doctor told her he was going to call the cops if she came back to the ER again because he felt she was a drug seeker.

When she told me this I wanted to cry for her, for the injustice and for all the crap that we as Endosisters go through everyday with this disease.

We should have no problem going to the ER but in fact it is very well known that we are treated as drug seekers or they have no clue what Endometriosis is to begin with.

According to an article I received from the CEC Endometriosis remains the 3rd leading cause of gynecologic hospitalization in the USA so that being said why on earth are these ER doctors not being updated with the facts and knowledge about this disease?

I dread the hospital I go to however the one ER doctor is pretty nice and understands more than I thought he would however if I go on a day he isn't there I better just pack up and leave because I am only going to be treated like some drug seeker.

When will we be treated like normal human beings?

We have no GP's that understand the disease, most Gyno's want to push Lupron or some other drug of choice but nothing to help with the pain. There are limited doctors around the world that can properly excise this disease and most of those surgeons at some point will retire then what?? What will we do then?

I can't understand in this day in age that this disease is still considered "taboo" Give me a break already.

I know for me no matter what I am advocating for this disease until I die, until there is change and until we are heard and treated with the dignity we deserve.

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.