Thursday, January 16, 2014

The Faces of Endo Part II

Well here we are again making strides and seeing faces of women all over the world take part in "The Faces of Endo" project I started I think it was October. So many women have come forward to have their picture posted and we have reached at this time 663 faces!!! only 337 left until the March and I really feel that we can do this. 1000 faces from all of the world shouting "Change is needed, Awareness, Endometriosis, Stop ignoring us" I can not wait until this March because it is going to be one the greatest things I have ever experienced :)

If you haven't sent your picture in please do.

Monday, January 13, 2014

Stand up for your own health because no one else will.

A narrative letter written from a patient to her surgeon.

To Dr. X

I decided to write this letter as I am very angry and thankful at the same time with you. In 2007 I came to you and within seconds the rectovaginal cyst was found that was missed for 12 yrs. I suffered from the age of 13 yrs. old and was made to feel like I was losing my mind and tossed so many meds and turned away by over 40+ doctors. When you booked surgery 3 months later I was ecstatic because finally I would get some answers although I knew from all my research I had done for 14 yrs. at that time that I had stage IV.
I want to thank you for the job that you did as it was a successful surgery for 2 yrs. and you did do a lot of work on me, however the treatment I received from 2010-2012 was unreal. The first couple of times I came back to see you I told you that I was having a lot of bowel and bladder pain and you told me I was just trying to find a problem when there was no problem. This went on for about a year and with me leaving crying because you weren’t even listening to what I was saying. Around 2012 you finally did an ultrasound and found fluid in the cul-de-sac and told me to go on Lupron and if I wasn’t in any more pain and the fluid was gone it was Endo and you would operate and if it wasn’t than you wouldn’t and that it wasn’t Endo.
Well I did the Lupron as requested and no I wasn’t having sex because it still hurt and yes I was still in pain with my bladder and bowels yet you didn’t do another ultrasound you just said “It’s not Endo its neuropathic pain syndrome” also mentioned something about me being too high risk and that there was too much damage done from the Endo and the surgery in 2007 you would not operate. What you made me feel that day was so wrong. I was put through so much mental anguish as well as suffering and you were not willing to treat me unless it was with Lupron and that went on for about 2 yrs.
You knew I was going to Pain Clinic and you sent me to a “baby doctor” either because you didn’t believe me or because you just didn’t care. You wanted me not to come back and you did not want to help me. I will have you know that after being subjected to 3 different types of meds and peeing 60x a day and using enemas 3 times a week she finally operated on me and yes there was "Endo" on my bladder and in the cul-de-sac and also carbon residue on the bladder flap from the laser being used in 2007. There was also scar tissue wrapped around my bowels stuck to my laparotomy scar,  as well as it was on my ovary, tubes and ureters.
So that being said I had to be operated on by someone who didn’t have the skill and she “got all the endo she could” She left Endo on my bladder, and could not remove the ovary, tube and ureter embedded into the pelvic wall by dense adhesions even though I had told her and we agreed upon that if it became too complicated she would open me up and remove it all. Guess what? That didn’t happen and I am now still suffering.
At this point in my journey I have a top surgeon who will not operate, a surgeon who does not understand Endometriosis the way someone should if they were being sent to them for that specific reason and a GP that knows nothing about Endometriosis.
I have researched for 23 yrs. and with that I have had to push to even get to where I am because no doctors in Canada will help you with this disease. You are the one that should be the one standing up for us but you don’t you throw us under the bus and make us feel like it’s all in our heads and that we will not die from it. Do you know what this disease has done for my quality of life over the last 23 yrs.? Do you know how much I have been let down by doctors over that time and how humiliated some of them made me feel? I have no doctor, no surgeon and no options and I am suffering every single day.
I was denied by Ohip for out of country surgery twice because I don’t have a specialist that will sign off on it. Considering the history of you and that U.S surgeon have, my chances of you signing off on it are slim next to none and I need this surgery. I live in a country where health care is free and I understand all the politics that are involved and I understand all that you do for people with Endometriosis and you are overworked and underpaid but why not stand up for us and tell the Ministry of Health that we just don’t have the proper tools and enough surgeons to do this type of surgery? You are one person you can’t do it all and in the end you make patients feel like they are making up the pain and that it’s all in their heads.
If Endometriosis is your passion then why are you not standing up for us? Why let us suffer?
You are the only person that can make this surgery happen in Atlanta and I am begging you to please write me a letter stating that my surgery can’t be done here because it’s too complicated.  Please do not make me suffer another year of this I can’t go on another 23 yrs. of this and either can my family.
Only you have the power to change how things work in the Country your voice matters and I need this and so do so many other woman. I have nowhere to go and I can’t be operated on again by someone that doesn’t know what they are doing. So please consider this as you are my last option or I will have to pay out of pocket for a much needed surgery with money I just don’t have. 

Yours truly. 

Wednesday, January 8, 2014

Today is a new day

Being Positive about your future and Endometriosis or Chronic illness

When someone is dealt the cards we have been we often feel relief at first that finally something was found and that you are not going crazy however after that happens comes the anger, frustration and negativity and sometimes that takes priority over everything and we focus on the negative aspects instead of trying to forge ahead. I am guilty of this completely and I think because of the medical neglect and lack of compassion I have developed an obsession with Endometriosis to be honest. The negativity surrounds me with this disease and I can't focus on anything else but what it is doing to me physically and mentally.

I have had many Endosisters message me about how good social media has been through their journey and some that find it so negative and they can't seem to find hope with all the negative tweets.

So with their inspiration as well as one girl in particular I am making this blog post about the positive things that I have encountered or dealt with while battling this disease we call Endometriosis.

Since my surgery was done well before the time of me getting into the social media aspects like with Facebook and Twitter I landed at a place called Medhelp in the ovarian cancer forum. I was just told I had a 10 cm complex ovarian cyst. I was scared and needed some advice. To this day I could not thank them enough. I have known them now for over 6 yrs, some have cancer, some have thyroid issues, Endo etc. The advice I remember the most... well there were two. The first one was that 99.9% of cysts are benign. That was repeated over and over and over again. The other one was that you have one chance to get it done right so do it the first time, find the best surgeon for your disease because it is your body not theirs. They helped me through dark times and we have all remained friends. We have lost some cysters throughout the years to ovarian cancer, brain cancer and a couple right now battling ovarian and breast cancer. We are a tight unite who always end back up meeting up in our private Facebook Group. We are the BBBC (The Bulge Battling Battalion Cysters) We are a united front and I think having positive friends like that are crucial to your journey no matter what disease you have. They have saved my life for so many years just by being there.

Another positive thing that has happened is that I remained on Medhelp answering various questions for others since 2006 and had the Endometriosis Forum opened just over a year or two ago and am now the Forum leader there. Most people come and go and never stay so someone needs to be there to help and in return it has helped me mentally because I am able to be there for others who are lost and need answers. I have learned a lot since being the Forum leader thanks to the Dr. Redwine, the CEC and various websites and my knowledge about the disease has been key and for me that is a positive thing. knowledge is power.

In Feb 2009 I signed up for Twitter however did not tweet hardly anything because I just didn't like the format at all however Nov 2012 I took to twitter again and for some reason searched "Endometriosis" and that is where my life changed. I met so many wonderful women who have been so supportive over the last year and not all Endosisters. I have met many men and women with Lymes, MS, EDS, Lupus (spoonies) that have changed my outlook on many things. My goal was to try to be positive and and help others during their journey but sometimes when I am in a dark place because of various meds or seasonal depression I can't seem to be positive but then I think of my friend @_EndoHappy that always posts positive things and its then that is when I realize that I need to keep focused on the positive as it will do no good me dragging everyone down with my own contagious negativity.

So besides all that above the positive things have been; Being diagnosed and finally getting answers after 14 yrs, A very successful surgery in 2007 for Deep infiltrating Endometriosis and recto-vaginal septum. The relief I got from that surgery was amazing. I am lucky and happy that on top of a great surgeon operating on me I found a pill that has worked since 2007 which is Marvelon. It has changed my life completely. I am no longer bedridden and in crippling pain anymore, I haven't had a period in 7 yrs !!!  I no longer get the hormonal migraines that plagued and hospitalized me for 12 yrs, I no longer get the rectal pain that would stop me in my tracks, no more chronic nausea everyday and most of all the hormonal fluctuation are pretty much under control. I refuse to be a victim of this disease or be negative because when you focus on the bad things you stop living. So my advice for everyone battling Chronic pain or illnesses is that focusing on what is important everyday and think of the positives that have come out of diagnoses and try to be happy. When you focus on the negative that is what your life becomes and you dig yourself deep into a pit of loneliness and depression. Don't think of the things you can't do anymore, focus and be happy about the little things that you did do. Try to encourage other Endosisters new to the disease or old that there is hope and we are that much closer than we were yesterday. There is no cure but there is hope for pain to be decreased dramatically through proper surgery with proper tools and proper surgeons, we need to be the voices that make that happen and the voice to the newly diagnosed that there is hope but it is harder to obtain but not impossible to get to. Yes I still need another surgery not because the surgery in 2007 was not successful, it is because I had it so deep and in order not to cause more damage to the nerves and other organs they went as deep as they possibly could. So the Endo didn't spread it just kept growing in two spots however the disease is not as bad as it was before the first surgery but because I also contracted PID 2 yrs after my first surgery it made my insides also like glue with severe adhesion's so the pain I have to this day is not 100% Endo related. So I urge all of you to think before going into surgery and to find the best possible surgeon to operate and do not accept anything less because when you do, you are most likely to suffer a lot more  and a lot longer than if you had got the first surgery done right the first time and for those that have had horrible surgeries focus on the best now its never too late. Save, raise money, have bake sales etc and do whatever it takes to get to the see the best surgeon you can and you will be happy in the end that you did. I am not saying that some people don't have aggressive Endo but what I am saying that most of the people I talk to on social media and in person have not had a surgery done by one of the top surgeons and to be honest how many are there about 10? We are limited and its hard but it is not impossible. If you can't get to one of the top ones at least find a reputable surgeon who has done a lot of Endo surgeries and that excises the disease and that can take it off the bowels, bladder etc. 

My final words for all of you is to Focus, Be positive and push forward. Don't stop until you get to where you need to be and make it happen because only you have the power to change things no one else. 

Monday, January 6, 2014

Mentally going out of my mind. #retailtherapy #vacation

There are times in your life where you have these ups and downs where the downs are so dark you don't think that you will ever escape the darkness and suicidal thoughts creep in. This has been an ongoing battle for me since I was 15. Different medications for Fibro, Endo and TMJ haven't helped when it comes to those thoughts and feelings of despair.

I always feel like I am running around like a chicken with it's head cut off with no space to breath, no down time and no time just for me period. I am the person who takes care of everyone, the person that supports everyone and its difficult for me to just sit down and relax its just impossible for me because I get antsy in no time.

I reached an all time low just recently and thank God I pulled myself together, went to get a hair cut, pedicure and take in a movie. I also spent money on clothes just for me because it has been so long since I took care of myself. I forced myself to play a game with my daughter as well as play out in the snow as she needs time with her mother and one on one time is hard for me to do not because of all my chronic illnesses but because I have forgotten how to be a child and have fun. I am so serious all the time and I need to change that and I plan to this year for my daughter.

I am trying to raise money to get surgery done in Georgia and that could take a very long time however I also feel guilty asking for money when I am going to save as well to go to Jamaica. For me I need sun therapy. I need time for me and time to do nothing and relax and that is a place where I plan to do it this year. Could be in the next couple of months or even near the end of the year all I know is that I need this trip now and I wish I had the money to go on a plane as we speak but I don't. My husband works seasonal so not much money is being brought in, however I have the money to go and sometimes I get so frustrated that I am always the one that seems to have worked so hard to be able to do this but I can't afford to pay for him too and I am being held back instead of making this a good time it causes more stress on me.

I need to get away from everything in order to free my mind. I think its important for everyone. I am not much of a flyer however I will do anything for an all inclusive trip to a hot resort.

I will tell you right now I am saving every penny I have to go on this trip I need it like nobody's business!!! LOL.. Look at the picture below.... can you see me on one of those chairs??? LOL