Monday, September 30, 2013

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? 

Wednesday, September 25, 2013

#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? 

Monday, September 23, 2013

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?

Tuesday, September 10, 2013

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  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!


Visanne, to take or not to take that is the question. 

In 2012 I was seeing a Endo Specialist at a pain clinic and she suggested I take Visanne to essentially help with the pain and stop my periods. During this time I was on Marvelon which works very well for me but since I was pushing for a surgery I felt that I needed to do what she asked just so that she felt that I was listening. I was told Visanne was new on the market in Canada and that it was similar to Lupron but in pill form and with less side effects. Visanne is a progesterone only pill and I should have known that my body can not just have progesterone.  I found Visanne did 1 thing for me and that was stop my periods. 

The side effects that I had were severe sharp pelvic knife like stabbing pains all over the pelvic region. My skin started to break out like crazy all over my face, neck, back, and chest. I started to get really depressed, I had insomnia and by the end of the third pack (3 months) I was completely off my rocker and suicidal. 

I am not saying that you should not try it because I am not that daft. I know that everyone responds to medication and treatments differently and I could never say don't take it, I can only express to you what I went through. 

Would I take it again? HELL NO!

I think I will stick with the Marvelon for now even though after 8 yrs I am starting to spot every month which I have never done before. I can't picture myself not on Marvelon. I have tried to come off it but what happened to me during my Visanne trial is what happens to me when I come off Marvelon. 

I always thought that I had an Estrogen dominance but for some reason I am thinking that it is actually Progesterone.

If you are looking for more information on Visanne here is the Bayer website.

What experiences have you had on Visanne?   

Monday, September 9, 2013

If you don't understand my illnesses please keep your mouth shut.

During the last 23 yrs of battling one Chronic illness after another I have gotten to the point that I want to tell people to shut up more and more. 

My point is, if you don't understand the disease ask! It is that simple. If you do ask, don't preach about all the things that can be done to cure me because I seriously at this point might punch someone in the throat. 

My disease can not be 100% cured, there is a possibility of having less pain with excision however I still need to be on the Birth Control Pill every single day, at the same time until I hit menopause. 

I have a friend who made a comment on my Facebook page that got me right pissed off and I mean, are you serious? How much more can I advocate and give people facts for them to still make these stupid comments? 

Here was my post:

"After 23 yrs battling this disease I have learned that the Canadian Health Care system really sucks ASS!! They are willing to send you to test after test and push all these drugs without even listening to the patient for one second. All I can say is that I am glad I am in the hands of the #CenterForEndometriosisCare The respect they have given me in the last month during this process, the emails, the phone calls and the reassurance that they are fighting for me seriously makes me want to fall to my knees and cry. Dr. Sinervo, Heather and his team are amazing and they listen and empathize at what us Endometriosis sufferers go through and want to help. It is so sad that the Canadian Health Care system is so crap. They need to take a tip from this organization and learn what is needed for this disease. Either way I am getting my surgery done there if they like it or not and they WILL pay for it. That I can guarantee"

This is the response that has me: 

"That's simply called western medicine my dear. You should seek a homeopath or natural path"

When someone says something like this I get so upset thinking "Are you kidding me? How many times can I explain this illness to people and still get these comments back?"

Some people will listen and those are usually people that are empathetic that are dealing with or have dealt with something similar and they understand what they needed to hear so they try to listen and say encouraging things and that is what is important. If you know nothing about a disease then you have no right to even open your mouth period. 

I find that people that haven't suffered are the ones that make these comments and it's those people that make people like me suffer more because all I want people do do is listen and educate themselves and understand that I am not a lazy person, that I am ill and that not every day is going to be a good day. I want understanding. I want them to know that their daughter, granddaughter or friend could have this and its time that people get educated on a disease that effects millions of women world wide. We need to be heard and more awareness needs to be done in order for us to see change. 

What comments or advice have people given you that makes you angry? 

Wednesday, September 4, 2013

Pain medication for Endometriosis in Canada

I thought that I would write a post about this as I am off to see my doctor to sign off medical paperwork for OHIP for a possible surgery in Atlanta with Dr. Sinervo.

What I think is funny is that in Canada there is little to no excision surgeons to help get any relief from Endo. I had one of the best surgeons operate on me but he refused to operate again because he said the first surgery caused too much damage because of how deep it was and that I didn't have Endo I had "Neuropathic Pain Syndrome" Needless to say I asked Dr. Redwine about this and he said he has never given this diagnoses to any of his patients. So that being said I had no one to operate me that had any kind of skill whatsoever with this disease.

I was sent back to Wasser Pain Management Clinic in Toronto and saw the gynecologist there. To put this as nice as possible, she is a baby delivering doctor who is hopped up on what seems to be 20 red bulls when you talk to her. Nice lady and all but she just didn't have the skill and I went through a year of various medications but none to really help the pain. I know Visanne helped stop the periods but did it stop the pain? No.  I tried Amitriptyline for about 6 months with Visanne as well and that did little to comfort the pain just made me want to sleep.

If you want pain meds you need to end up in the ER but even then it is not like you can ask for anything because you end up looking like some drug addict. They make you feel bad for being in pain with a disease you never asked to have to begin with and because of their lack of education in this country and pretty much worldwide we are made to suffer endlessly for no reason. What a cruel joke.

I suffered for 14 yrs before being diagnosed so I know I can handle the pain for the most part and since my first surgery in 2007 I did have tremendous relief when the recto-vaginal cyst was removed however there are times I am in pain and no its not everyday like it used to be but its a couple of times a month since I am still on the Continuous BCP. So I feel that I am in a good place but there are days when the pain is so unreal and I have to suffer for no reason.

I plan to talk to my doctor today but as she has said "She knows nothing about Endo" so not sure how the heck she will even help me with pain relief. She is a nice doctor but is all about the natural ways of healing. Well I can tell you this, I am not healing and I am not even close to menopause so why is she making me suffer? I think for the most part in Canada there have been some major changes to pain relief for anyone so if I had a problem before you can most guarantee that I will have trouble now.

Is your doctor on the same page as you when it comes to Endo? Does she/he give you the relief you need?

Tuesday, September 3, 2013

Awesome Endo picture

I am not sure who to give credit to for this picture as I found it randomly one day on a Google search. I want to say its one of the most amazing pictures and I love it a lot.

Depression & Endometriosis

When I think back on my life I have tried so hard to think when this depression first came on and I really can't. I had many things going on in my life such as childhood abuse, school changes (This was so hard for me) High school and chronic pain.

I know that back when I was a teenager I was deeply depressed and stayed that way until around my 30's when I had gone to see several therapist and was tested on many Antidepressants. It wasn't until I went on Wellbutrin XL x 150mg that I really started to see things differently. I was on it for 5 yrs with limited side effects and it was easy to come off. I felt a little bit more normal and I went to various therapists and started to sort out my life and try to get over things that really had broken me.

When I turned 35 the Wellbutrin started to give me anxiety attacks so I had to come off it. It felt almost like a panic attack/ hypoglycemic mixed as one. I still have not figured out why it was doing that and it really sucks since I seem to get depression every 3 months like clock work. In the winter it lasts a lot longer.

I have had my fair share of Endometriosis Hormonal meds such as Lupron, Visanne and Marvelon. The only one that works for me is the Marvelon. Strange since it really doesn't seem to work for most Endo sufferers.

I found that the pain mixed with these hormonal meds really messed up my brain for a good 3 yrs. I have promised myself I will no longer be a guinea pig. If the pill stops working I will just have to suffer through it. I did it for 14 yrs can't see why I couldn't again.

Depression really sucks and for the most part I can feel it creeping up on me like this dark cloud that wants to wrap me in darkness and take me away. It is really scary. I find that if I post and think positive things its like a repellent, however if I post and think negative things that have to do with depression I bring myself to this place all by myself. I feel sad most of the time and it is really hard for me to find happiness in anything. I want to, but I don't think that I have ever been happy a day in my life. Its like that emotion doesn't exist for me.

Chronic pain has totally changed who I am and I think a lot of my depression now is the suffering for over 2 decades from not only Endo but Fibro, TMJ, Chronic Fatigue and various other problems. How can someone really be happy when they suffer like this? I feel like I am a good person but I seem to attract people that bring me down on a constant basis. I don't know how this happens and I want it to stop. Its like I am a magnet to anyone with problems and I don't mean Endo problems that want to pull me down to where they are and I want to help them but in the end I need to help myself and I always put other peoples feelings first and I care too much what people think.

So for me I think I bring myself to Depression because I think negative. I am a black and white thinker and I expect the worst to happen. If I don't worry then things work out and if I don't bad things happen. I guess for me its control. I can't seem to control anything else around me or my own body so this is what I do.

How do you stop such bad habit that has been formed?

Monday, September 2, 2013

Great Endometriosis Books

I have come across some very interesting books that I would like to share to my Endosisters. I have 3 that have been so helpful on my Journey.

The first book I bought was when I first found out I had Endo and it helped with certain things I just didn't understand. I still have this book to this day and read it every now and then.

This second book I got most recently as someone told me about it and it was highly recommended by various Endosisters on Twitter. Its called "Stop Endometriosis & Pelvic Pain written by Dr. Cooke. this book is wonderful and there is a page which I will post so you can get an idea of how amazing it is. 

 Little blurb

The third book I bought, well I didn't buy it I got it from my mom for my birthday this year, however I have yet to read it. I know its a great book as it is written by Dr. Redwine, but I will update more info once I have had the chance to actually sit down and read :)

The Spoon Theory

I remember starting up on twitter around November 2012, I always had an account but didn't use it until then. I would always see these hashtags that said #Spoonie and I could never understood what a spoonie was but was curious as a lot of women with chronic pain were using it. I can't remember if I asked someone or if I just googled it as I am a google freak if you must know :) but I ended up finding this link to the Spoon Theory.

If you don't know what it is please I ask you to go to this link and read what it's about so that you can explain Chronic illness and pain to people that just don't quite get it.