Why am I so fixated on this disease-Endometriosis?

As long as I can remember I have been in pain. I am really not sure anymore what came first, the mental anguish and depression or the Chronic Pain. Sometimes I believe the pain did me in first then sometimes I believe the depression caused the pain. 

Everyday I wake up the disease seems to take a hold of me. I wake up like a truck hit me. I don't even remember what it is like not to feel tired. I am so tired half of the time I want to cry but I can't I have to get up and get going. I am the bread winner it is my job to make sure all is in order. I can't crumble or fall it is just not in my cards, even when my body is telling me it can't take it anymore. 

I had an amazing surgeon excise my Endo out in 2007, he was and possibly is one of the best in Ontario let alone Canada however since he has moved to a teaching hospital his attitude has changed. He always lacked the bedside manner but now he is just more of a jerk when I had to see him face to face.

I no longer feel the pain of Endo because I am one of the lucky ones that the BCP that I take continuously actually helps me, not just for Endo but for mood, acne, hormonal balancing etc. It has been a lifesaver to me. I think the surgery was the most important and because he got 90% of it I clearly live in less pain than others. 

Then why in Gods green earth do I still think about it obsessively? Why can I not let go of this and move on with my life? I volunteer my time for others to help get the thoughts out of my mind. Some times I feel as though I have PTSD from this disease taking so long to be diagnosed and how I was treated mentally did a number on me. I find myself researching and taking in any kind of information I can about Endometriosis and I can't stop. I am obsessed. 

The damage done to my ureters, bladder and bowels are irreversible and it really doesn't matter what I research I will never be the person I once was. I feel like this disease owns me. Almost like its wrapped itself around me tight so that I can't run away and live my life. I feel trapped. 

I wish I was never burdened with this disease and other co-morbid disease but I have been. Sometimes it makes me really depressed and other times I have to tell myself to stop thinking about it so much and to move on.   

Is it really possible to move on once you have been ripped to pieces by this disease? It has stolen my quality of life and I now just exist. I want to scream at people all the time because they just don't understand what I have been through. I did it alone. For 23 yrs I did it ALONE. I still do it alone. In fact I now want to do it alone because when people make comments about the disease it makes my blood boil. When I try to explain it I can tell they are not even listening. 

I want to stop thinking about Endometriosis, but its impossible. As long as I have ovaries, tubes, a uterus, cervix, hormones, and medication I will always be this person that will never be able to escape the pain and suffering of this disease, not just physically but mentally. It has robbed me of all joy and happiness. 

This disease really does suck, but I still refuse to stop advocating and voicing my opinion because in the end it will be people like me and all the other girls that suffer with this to put our foot down and say enough is enough already. 

I truly am excited about the Million Women March coming up with fellow Endosisters. It is going to be amazing and we will be heard I can guarantee that. 

Who will be going to the March? 

#Bowel & #Bladder Pain #Endometriosis

As long as I can remember I have always had bowel pain and would always find myself running to the bathroom and often. At 15 yrs old being diagnosed with IBS with all the pain I was having left me stumped. A disease that clearly a lot of people had did not correlate with the symptoms I had which were sharp stabbing rectal pains any time of the month out of no where that would leave me breathless, total evacuation of my bowels a day before my period and complete constipation for at least 6 days while on my period and until I actually could go after the 6 days the pain was more intense.  I never believed the IBS diagnoses and I am happy I didn't as it made me keep searching for answers as to what was wrong with me. I was finally diagnosed with Stage IV Recto-Vaginal Endometriosis (DIE) in June 2007 at 27 yrs old. 12 yrs of unnecessary agony!

For the first 2 yrs it was amazing the pain disappeared and I didn't have the constipation as bad as I had prior to the surgery.  However a bout of PID caused things to change really quickly and things started to go downhill. My bladder would spasm as well as the urethra, I would be peeing over 20x a day with severe pain. I would get to the toilet and nothing would come out, then little dribbles would come out then I would have to walk around for 10 mins to finally go again but I would always feel like there was more there but it wasn't coming out. By the time I had my second surgery in Feb 2013 I was peeing over 60x day at at times peeing myself because I would either have pain or no sensation to pee at all. 

The bowels that was a different story. I would go over a week not being able to go and the pain was unreal so I started to do enemas. Eventually by the time of my surgery I was doing them 3 times a week just to be able to function. 

During my surgery they found carbon residue on my bladder flap which was caused by the use of laser. When talking to Dr. Redwine he said that carbon residue acts as a splinter so you can imagine how much that would hurt and what havoc it could cause. I also had a partial bowel obstruction from scar tissue that seems to want to attach itself to a 3 inch scar I have from a surgery from when I was 7 yrs old on my bowels. My ureter was also tangled up in scar tissue and the other ureter still embedded along with the ovary into the pelvic wall. 

So that being said I feel about 70% better because I am not having to use enemas every day nor am I peeing 60x a day at this time, however the pain and problems are still there and they are causing more problems then the actual Endo pain itself. I get so frustrated and wish that this pain would just stop already. All I do is focus on it because it has become a big part of my life that can't just be ignored. 

So my question now is besides physiotherapy, ball rolling, surgery and pain meds, is there anything that can be done for my bowels, ureters and bladder? Will I always suffer like this? 

Marvelon 21 & Endometriosis

I thought that I would write about what method works for me when it comes to Endometriosis. Before I was diagnosed with Endometriosis I was having severe migraines some lasting for over 100 hrs and I would end up in the ER to treat it because if my migraines were not caught before it was about to happen nothing would work. I was diagnosed with Aura Migraines at 15, Cluster Migraines at 24 and Complicated migraines at 27. The reason I am mentioning this when talking about the pill is that usually if you suffer from migraines you shouldn't be on the pill, but from the first week I started to take this med my hormones started to regulate and I no longer had migraines. I have been on the pill since 2007 and have only had 1 full blown migraine and one that I stopped before it came full force. For me I assume my migraines were always brought on by hormones, maybe that is why they could never figure it out and nothing would show up on MRI's or CT scans.

So other than it working so well for me when it comes to migraines it cleared up my face, chest, back and neck which I always had bumps all over and some pimples. Mostly they were these weird bumps.

However because I didn't realize I had Endo and I only started this 3 months before my first surgery it didn't help stop my periods however I did stay on it. After surgery I was put on Lupron for 3 months then back on the pill. I have continuously taken it for 7 yrs and it works so well for me. No periods, no pain, but as soon as I come off it, watch out!!! I know that I will end up having to be on this until menopause and I don't like that aspect of it but what can I do? There was 2 yrs where I didn't even get the regular 3 month breakthrough bleed, I had nothing for 2 entire years it was fantastic!! Even now when I think of blood and using tampons or pads I get completely disgusted thinking about it.

I wish this pill worked for everyone as well as it works for me but I guess its all about trial and error.

What do you use? Do you have any long term side effects from the continuous BCP?

Many Thanks to Dr. Redwine

At least for the last 7 yrs I have researched my face off trying to get to the facts of Endometriosis. I have heard so many wild stories such as; Getting pregnant will cure Endometriosis, Surgery will cure Endometriosis, Mirena causes Endometriosis, that there was this so called Stage 5 Endometriosis, that diet, herbal supplements, and Lupron will stop the lesions to grow.

I was not only getting this information online but actual doctors and surgeons and I am the type of person that wants to know everything and since I went 14 yrs undiagnosed I was going to find out the facts so that I could help others and hopefully they will not have to suffer as long as I did.

This man is my Hero in all sense of the word. He gives you the information straight no sugar coating it and since he has researched and documented from over 3000 surgeries for the last 30 yrs I really think its safe to say that whatever this man says about this disease is FACT.

I thought I had most of the facts from researching but there were a couple that stumped me so when I heard he retired and I found him on Facebook answering questions it made me so excited!! I really was. I know that sounds weird but I am a huge fan of his.

So I threw out all the questions that would come up in mind or that others wanted answers on and on this part of my blog http://endendoforever.blogspot.ca/p/endometriosis-facts.html  You will see some of the questions asked. He is quite the funny man if you ask me :)

Sad to say though that someone alerted Facebook and had his Facebook site shut down for no reason. He did nothing wrong. This one act of one person could have shut the doors on a walking information source that could change the lives of many women and to educate the doctors that still are behind the times when trying to treat their patients with this disease. He said he won't be back on there as he was hurt I think and why shouldn't he be? He is retired and he spends his retirement helping people like me in pain and gives us the facts so that we can get the help.

If anything this man needs some kind of humanitarian award for all the work he has done for us women when the medical field blatantly turns their back to us and refuses to help us with meds, surgeries and information.

So from all the Endosisters around the world THANK YOU!