Sunday, March 23, 2014

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

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.  

Monday, March 17, 2014

My Period Is More Painful Than Cancer

I came across this story on Facebook about a girl named Nicole Malachi and didn't realize the connection with the Endo Warriors group. Not everyone is on Facebook so I felt it was important to share her story because there is a lot women who suffer and because we "Don't look sick" people push us away and tell us to suck it up and that it's only a period. She validates us as sufferers as she has experienced both Endo and cancer. It is a very good read and I hope it helps other people understand our pain is real and not exaggerated.

Thursday, March 13, 2014

CN Tower lit up for Endometriosis 2014

March 12th The CN Tower in Toronto lit up for Endometriosis Awareness Month. The weather was horrid with at least 25 cm of snow but those who came to see it are troopers. It was awesome and it was a start for something big in years to come. 

Tuesday, March 11, 2014

Fellow Canadian Endosister shares her Story about #Endometriosis on the news

I think the first time I talked to Amanda was about a year ago. She works for CTV in Edmonton and is a fellow Endo sufferer. She was so brave to share her story with her own network and I personally can't thank her enough. She is an amazing woman and I am glad that I have gotten to know her.

Here is the link

CN Tower to light up Yellow For #Endometriosisawarenessmonth

How exciting is this? We are being heard little by little and for us in Canada this is HUGE.  

On Wednesday March the 12 at 8pm come down to the CN Tower at the base by the front entrance, bring family friends and whoever you can think of and let get our voices be heard. Don't forget to wear YELLOW. Did I mention the press will be there??  Don't miss this Endowarriors we need your support :) 

Saturday, March 8, 2014

Bye Bye Uterus....

Well I finally got the call, one that I was not expecting for a long period of time due to the delays in Health care in Canada. I expected to have to see the urologist first and have to wait to have tests done, then wait for them to go back to the surgeon then the surgery would be booked. I have anticipated this for 5 yrs and can't believe that on May 9th it will be all taken out.

Nervous is an understatement. I have researched the side effects and the pros and cons of a hysterectomy and I am very aware this is a 50/50 shot a relief and it is possible that I could be worse off later however for me this is a choice that I have made for me and no one else. I know a hyster will not cure Endo, I know the consequences of this type of surgery but I also am ready and have been ready for a long time. This is a choice I am making for me because of all the cervical, Endo, uterus issues I have had as well as possible Adenomyosis. The pain and suffering that I have endured for 23 yrs has gone on long enough and for me this is closure. It is time for me to start my new life and try to move past what Endometriosis has done to my quality of life.

I am petrified of the aftermath of my hormones the most. Will my migraines come back? I have been on the BCP for almost 8 yrs without a period and since doing so I have not gotten one migraine. I am wondering if the side effects will be similar to when  I was on Lupron.

For those who have had a complete hysterectomy how did you feel after? A month later? A year later?

I am only looking for positive feedback as I am fully aware that there are many opposed to a hysterectomy but those who have walked in my shoes completely understand why I am doing it. This isn't an option for me.

Tuesday, March 4, 2014

#Endometriosis Awareness Month- What are you doing to get #Endo awareness out there?

March kicked off strong all over the world for Endometriosis Awareness month and I am so glad that I have the opportunity to have the entire month to raise awareness for this debilitating disease. I myself have suffered for 23 yrs and wasn't diagnosed until I was 27 yrs old in 2007. The journey has been long and I wish there was this much awareness out there when I was 13 it could have saved my sanity if anything.

There are so many different awareness videos, pictures etc all over I feel so happy that our voices will finally be heard especially March 13th for the first Million Women March For Endometriosis. I am pumped and ready to go and to be heard and to stop the silence of this taboo disease.

Someone with Endometriosis will have medication lists that look like this if not much more and for me my benefits run out in August so I am in trouble as my Endometriosis symptoms and Co-morbid diseases caused by Endo need medication to be able to function. This is not what our lives should be about.

There is an interesting Challenge going on that I am taking part of and here it is below if you have not already started. I will update the answers once the month is over. 

#Endometriosis #Awareness - 31 Day Challenge

Day 1. For me, living with Endometriosis means: that I will never be the same person I was, I will always endure pain and side effects from meds. I will always have chronic fatigue and depression however it means also that I can advocate for others who don't have a voice or knowledge and support those that suffer daily.

Day 2. I was diagnosed with Endometriosis in/on: June 2007 days before by 27th birthday

Day 3. But I had symptoms since: although I was diagnosed at the age of 27 I had symptoms starting after my second period at the age of 13. The rectal pain started at the age of 15.

Day 4. The biggest adjustment I’ve had to make is: Stepping back and not overwhelming myself with things to do and to actually relax and rest. This is something that has never come easy for me. I have a hard time keeping still so to stop when my body is telling me to has been the biggest adjustment ever since coming to terms that this is my new normal.

Day 5. Most people assume: That after you have a surgery you can just carry on with life. They assume the problem is fixed and that I should stop playing the victim. People assume that endometriosis isn't that bad and that pain is just a week out of the month when in fact for many it is not it's the entire month and can't catch a break from Endo as well as co-morbid diseases. It really is "if it's not one thing it's another" .Some people assume that because I don't look sick that I am just looking for attention.

Day 6. These are the treatments I have tried so far:

1) 3 rounds of Lupron injections at $1500 a shot, used to treat prostate cancer, puts you I to menopause and can cause long term side effects as wells as extreme bone loss.

2) Marvelon21 bcp continuously with no breaks (sugar pills) in between other meds for the last 7 yrs straight. The purpose is to not have a period and ovulate therefore stop the pain

3) Amitriptalyne (Elvail) used to help with nerve damage and sleep

4) Gabapenatin- used for nerve damage and to help lower the pain

5) oxycodone, tramacet, endocet - all pain meds but don't work on me

6) flexeril- muscle relaxant for the pelvic floor dysfunction

7) cymbalta and antidepressant but also given to Endo patients

8) massage therapy, acupuncture, chiropractor, tens machine, osteopath, touch for health, dietician

9) diets- Endo diet, yeast free diet, vegan, vegetarian, paleo, zone, Atkins, juicing,

10) many many different supplements in the last 23 yrs and enemas

11) visanne for 3 month

12) 2 laparoscopic surgeries

Day 7. The hardest part about mornings are:  Getting up at all. I wake up barely even able to function and this never ending feeling of never being able to sleep and not wake up in pain or being so exhausted that I can't think straight sucks. I like to describe it as the movie "Ground Hog day" it is a never-ending cycle of torment. My spoons are used up getting up and getting ready to do whatever or wherever I need to go. This cycle has followed me for 23 almost 24 yrs now and it becomes so depressing knowing my life will always be like this and just to function in the morning has been the hardest challenge of living.
Don't mean to sound so depressing but I want to make sure I am real for this challenge so that people understand what it does and why most people say "You don't look sick"

Day 8. My favorite medical TV show is: I only have 2. The first one I watched faithfully was ER with George Clooney. One of the best shows I was so sad when it ended but then along came Grey's Anatomy to fill the void. Love those shows LOL..

Day 9. A gadget I couldn’t live without is:  definitely my iPhone it keeps me in contact with my spoonies from twitter and Facebook. Support is key

Day 10. The hardest part about nights is: That I can't sleep. I have chronic fatigue yet I am wired at night. I can't sleep on my sides or stomach or I lose feeling in my arms so I have to lie on my back which is really hard. Just to get comfortable is a challenge and usually takes like an hour and once I am nice and cozy the IC kicks in and I have to pee and the routine starts again usually happens about 3 times before I can actually fall asleep.

Day 11. Each day I take_____ pills & _____ vitamins: I have tried to stop taking any kind of meds for my Endo but right now I take marvelon every single morning and Zopiclone at night.

Day 12. Regarding alternative treatments I use: Various different things like Acupuncture, Body rolling to break up scar tissue, Digestive enzymes, Dairy, gluten free diet. 

Day 13. If I had to choose between invisible illness or visible I would choose: hmm this is a hard one, I would prefer neither but a visible disease more people would understand and see the pain where as Endo it not visual and people just don't understand how debilitating the disease is at times and its not just the pain its the Chronic Fatigue, lack of energy and the depression from not being able to accept that this will I will live forever.

Day 14. Regarding working and career: I thought for a while the place I was at was for me but the continue stress and lack of respect given to me changed how I felt the last two years. I have mixed feelings about how I was let go because I really believe it was wrong however I am so glad that I never have to go back there. My surgery is May 9th is my hysterectomy and it will take a bit to recover so after that I really don't know what I will do however I have been offered 2 jobs already but its not what I want to do.

Day 15. People would be surprised to know: that many women with Endo have various comorbid diseases. I was diagnosed with fibromyalgia 10 yrs before my Endo diagnoses along with chronic fatigue syndrome, neuropathic pain and migraines.

Some people with Endo have no pain at all and some women have debilitating pain along with horrid symptoms along with it. This is why Endo is very confusing to many because some say they "had" it and don't anymore or childbirth fixed it etc however some people just are not effected by it like others and that's a mystery.

Day 16. The hardest thing to accept about my new reality has been: that I will never be the person I was and it's gradually taken over my life for 23 yrs and there is no sign of anything getting better. I have to learn to accept this and I can't and it's something I struggle with everyday.

Day 17. Something I never thought I could do with my illness that I did was: Advocate about it. It's such a taboo disease and most people don't want to talk or listen. I was silenced for so long and as taboo as it is I don't care anymore. No one should have to suffer like I did. No one! So if I have to yell it from the roof tops or keep posting pictures I will. I will never stop talking about this disease because it has ruined so many peoples lives and us as women have been made to feel it's normal and to suck it up when in fact we put a smile on our face everyday to hide the pain and depression from battling this horrid disease. My voice is what I found since my diagnoses in 2007 and I never thought that I would have the courage to open myself up to the world but I did and that there makes a difference in my battle with this disease. Helping others find their voice.

Day 18. I feel that Endometriosis Awareness is: About speaking up about this disease and for us to be heard and that we suffer more than most people because of the taboo of talking about periods or uterus's we end up being silenced and that can't happen any more it is completely inhumane to do that to any human being.

Day 19. Something I really miss doing since I was diagnosed is: Playing rep baseball. I started to get really sick around 15 yrs. and for various reasons I quit. I had no energy to play and when games we cancelled I would be so happy unlike how I was before this illness took my life. I used to watch the rain come down and pray for it to stop. I had so much passion for softball and it is too hard to even play recreational. It sucks but I did get that time and those were the happiest days of my life on the field.

Day 20. It was really hard to have to give up:  certain foods. I am supposed to be on three different diets 1) Endo diet 2) IC diet and 3) TMJ so really its been hard to give up certain foods and at times I fail really bad but I have to keep trying in order to help alleviate the pain. I feel that not only am I being punished with all these diseases but I have to also stop eating most foods which has been THE hardest thing. Its been 10 yrs on and off these diets and its a constant struggle daily.

Day 21. A new hobby I have taken up since my diagnosis is: My blog and twitter. I have come to know so many spoonies all over the world. It helps me feel better to help others who are struggling and to guide them in their journey's.

Day 22. If I could have one day of feeling normal again I would: Like many other people I would think I was dead. I don't remember what it feels like to be normal.

Day 23. Endometriosis has taught me: That women are not treated like men and that we are the stronger sex without a doubt. It has taught me to be loud and break the barriers of silence and to help pave the way for the younger generation of Endometriosis sufferers.

Day 24. Want to know a secret? One thing people say that gets under my skin is:

-My friend got pregnant and she no longer has endometriosis

-my sister/aunt had it and it's gone now.

-You had surgery it should be gone now and you should feel better

Day 25. But I love it when people: Listen to what I have to say and get that this is not about attention but about awareness, understanding and for someone to say " I believe you"

Day 26. My favorite motto, scripture, quote that gets me through tough times is: It is what it is/Tomorrow is a new day

Day 28. Something that has surprised me about living with an illness is:  The lack of awareness even by doctors and surgeons. It is maddening. Its like you have a rare disease but you don't because I have 200 million Endosisters in the world so why is it that no one knows?

Day 27: When someone is diagnosed I’d like to tell them:  Make the first surgery count even if its diagnostic. Find the absolute best Endo surgeon you can find that excises and get it done right the first time. Be your own advocate and don't rely on what others say even doctors, research everything and keep all your medical files.

Day 29. The nicest thing someone did for me when I wasn’t feeling well was:  My friend that I used to work with for two of my surgeries brought me something to eat. She is a great friend.

Day 30. I’m involved with Endometriosis awareness month because:  It is about time women are heard and not thrown aside. The words period, uterus and vagina are all over main stream media however if you suffer from a gynaecological disorder you are shunned and its still taboo however naked women, pornography are acceptable.This is sad and it needs to change not just for me but for the next generation of women who will develop this disease. Taking 14 yrs to diagnose a disease like this is wrong and doctors need to get educated with updated information not go by a theory used 100 yrs ago. Times have changed, technology and the way we live. I can't even comprehend why they still do this and why they do not even want to know more to help patients like us.

Day 31. The fact that you read this list makes me feel:  That you are taking the time out to know more about this disease or that you are interested in learning what I have been through and now understand who I really am behind this fa├žade I carry around everyday just to exist. 

What are you doing to raise awareness? For me? I decided to show the world that we are not alone and that we are human and our voice deserves to be heard by making my blog with a wall called "The Faces of Endo" and we should be entitled to proper surgery and that means getting more surgeons that can excise as well as the tools to preform these surgeries. We can't continue to suffer like this, we deserve a quality of life being pain free.

Look at all these beautiful Endometriosis Warriors!!!