Monday, December 23, 2013

The time is now.

So after a long exhausting year with two denials for out of country surgery beneath me I have opened up a gofundme account hoping to raise money for surgery at the CEC. I really can't see me coming up with $12,000 doing it this way but you never know what can happen so I thought now is the time.

I live in a Country where health care is free but what you get what you pay for and it has shown of the last 23 yrs of my life. If you have a straight forward disease you most likely will get the care you need however with a disease like this when we lack the surgeons and tools to even operate you will never get what you need.

I am ashamed to even ask people for money, in fact I thought of doing this earlier but decided against it since I can barely take money from people to begin with let alone a whopping $12,000. UGH!

What has this country come to where you get denied the care that you should deserve and have paid into your entire working career. It makes no sense to me at all. I have emailed my local MP twice, contacted 2 papers and one news network as well as emailing the Ministry of Health to see if something can be done but also to educate on the problem not only this country has with this disease but worldwide. In turn I got zero responses. Its enough to even have a taboo disease like Endometriosis but even worse when you try to explain to people about this gynecological disease. Women in this world are suffering and they have done nothing to help in any way, instead we get doctors who either push heavy drugs or some that don't think the pain is real enough to give you anything. God they treat animals better than us females its sad.

I have no surgeon and my GP knows nothing about Endometriosis. Depression has set in but comes and goes as I try to think positive about it. I can't live in the past of what the medical field has done to me psychologically but I need to push forward to have another surgery done. Even if my pride tells me I shouldn't ask for money. What is someone supposed to do when they have no options left? Any of the other good surgeons which are not even close as being the best like my first one are not accepting any new patients and the ones that are lack the tools and skill to do excision surgery.

It is really scary since my daughter might end up one day with this disease and change needs to come and it needs to come now.

If anyone is interested in donating please feel free but please don't feel obligated to do so.

Wednesday, December 18, 2013

The never ending feeling of fatigue #Endo #Fibro #spoonie

The fatigue cycle for me has gone on since I was 16 yrs old about a year before I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia and Chronic Pain at 17 and Endo at 27. When people say they are tired to me I usually just ignore them because the extent of tired I feel is no where measured to someone who does not live in Chronic pain or suffer from CFS. The best way it has been described is feeling like you have been run over by a Mac truck and to be honest it does as well as over and over and over again.

When I wake up I am groggy usually from whatever med has been prescribed for me to use. When I am not on meds I don't have the groggy feeling just more of the extreme exhaustion. I had a sleep test done in the 90's and was told I have Restless Leg Syndrome as well as I don't enter a REM sleep stage. It has gotten worse over the years especially when I am on certain medications when it gets really bad I want to cut off my legs. The one thing I have tried is wearing baseball socks, it seems to calm down the nerves to some degree to at least yet me sleep. A couple of meds that make the RLS worse that I have tried is Gravol, Lorazepam, Cymbalta, and any kind of pain med like Percocet and some times my Jaw muscle relaxant Flexeril.

I often think that I do many messed up things in my sleep. I often think of recording myself because I have done things in my sleep like, sleep walking, talking as well as even taking a cast off in my sleep and putting in the bathroom.

Throughout the day I am exhausted and all I think about is going home to bed, but like any mother that just can't be done. Dinner has to be made, homework done, and spending time with the family this makes it really difficult for someone with Chronic Fatigue because you start to get very irritable, short term memory loss, and emotional outbursts. When its finally time for me to go to bed around 9-10 I am wide awake... UGH. This cycle drives me crazy, and I usually can't fall asleep until like 1-2 am so at the end of the day I am barely getting 5 hrs sleep a night.

I went through 5 yrs of really bad insomnia when I was first diagnosed with Fibro. I could not sleep for the life of me. I would finally doze off at 5 am and have to be up at 6:30 to be at work for 7 am. I would not take those days back for anything. I was lacking so much sleep I became depressed and suicidal. During those years I was under a lot of stress with the job I my mind would not shut of at all. I would replay anything and everything that happened during the day and there was no way to stop it and all doctors wanted to do was push me Antidepressants.

I am lucky now that I don't have those thoughts but I have a very high stress job which I am barely able to cope with which makes all my conditions worse. Pain from Endo such as bowel, bladder and pelvic pain keep me up most nights as well as the nerves all over my body that seem to be inflamed on a daily basis. No position I sleep in is comfortable. I have tried a new bed, pillows etc and nothing. My circulation cuts off on every angle and that is where the struggle comes in when I am trying to just get to sleep. Not to mention when I finally get to that point my IC kicks in and I have to constantly get out of bed to pee and start over... Someone shoot me.

It is a week before Christmas and I am so done mentally, physically and emotionally. I feel like I am on the verge of a nervous breakdown and nothing I do is helping at all. I come home now to read or watch TV.

I was told that drinking wine is better than taking meds and for the most part I have done this but lately it is really messing up my sleep. I wake up every hour on the hour if I drink wine and that is just not working for me.

I am not sure how much longer I am going to be able to cope as I debate every single morning when I am forced to wake up to even bother going to work, but reality is that I have to, there is no other way around it. I don't work for a company that I can take short term disability to see if this helps because I will be shunned and treated like crap so its better for me to suffer and hide what I go through because I need my job.

All I want to do is sleep I am in a state of tired that I don't think I will ever ever get out of. I have absolutely no energy to do anything. The only people that really understand are the ones that experience this sort of Chronic Fatigue.

Thursday, December 12, 2013

My mind #depression

Lost in my own world. #Depression #Chronicpain

It always seems that around this time of year I fall into a depression so deep that it is so hard to get out. It could be SAD but I know I struggle through out the entire year. I think in the summer I am more occupied and my mind does not sit idle but I do not like winter/cold at all so I am inside most of the time so I guess that is why it seems to be worse around the last 3 months of the year.

I have really learned to cope with Depression when I feel it coming on throughout the year, I trick my mind which took a very long time to learn and I wish I had learned how to do it sooner. As soon as I feel depressed I started tweeting funny pictures to help other people in their struggles then in turn it helps me not focus on what is happening in my own mind.

The last month I have gotten so deep that I am afraid but I do not want to take medications, they just don't work for me and I have tried many.

My eating disorder has gotten so out of hand but it is the only thing that makes me feel better. It stops me from thinking and it stops the pain from Endometriosis. Nothing makes me happy and I have always felt that way. If I become happy about something, something bad happens. I know that sounds just so ridiculous but that is how it has been in my life. I wish that I could find some joy but it is like I was not born with it. I have to really force myself to be happy and it helps but deep inside I just feel lost in my own world. I don't get close to people and I like to be by myself. I do like my own company a lot, maybe too much?

I am not much to go out and socialize and when plans get cancelled deep inside I am happy.

I have lived with Chronic pain as long as I can remember. I have known nothing but pain, physically, sexually, mentally and emotionally. Life sucks yet I am afraid to die. I just want to live with out pain and mental illness. I really don't know what came first but I always remember not really being happy or content with anything. How fair is that for someone to live like this? Depression you can't just snap out no matter how hard you try. I am convinced that I am wired completely different than other people. I am not normal but I guess, what is normal? No one is I suppose.

It has been hard even being a parent to my daughter. I know there are Endosisters out that that can't conceive and it kills me that I did and that I can't cope. I have no idea how I even made it this far being a mother because mentally and physically I can barely manage to get out of bed and my mind is all over the place all the time. If my daughter ends up with Endometriosis or any form of Chronic illness I don't know what I would do. I literally don't think I would be able to manage the both of us.

I am hoping that in 2014 I will be free from all of this, but I have to accept reality that this is who I am and I need to accept this is person I will be for the rest of my life. I can't seem to want to accept that, as there is always a fire and hope that one day the pain will end. I have clung to that hope for 23 yrs and I can't see me doing this another 23.

Thursday, December 5, 2013

My Battle With Food

As long as I can remember I have had a love hate relationship with food. As a baby I would vomit everything up or I could feel it coming back up all the time with certain foods. I ended up with an emergency laparotomy at age 7 for intestinal volvulus, my small intestine started to grow inside the large one taking out my appendix was the only option along with a bowel resection.

When I was 15 I developed an eating disorder. I wouldn't say this phase lasted long (anorexia) but I know when I was getting my period the pain was so bad for at least 10 days I didn't/couldn't eat. I was around 110 lbs most of my teenage years. People would always comment on how skinny I was and I would just stop eating just like that. I never thought about it to be honest until later when Endo started to effect my bowels. The rectal pain was so bad I could not stand it. I started to hate food because food meant rectal pain. I had so many tests done and they could find nothing.

I started to gain weight during my pregnancy. At that time I was 23 yrs old and I had only eaten once a day before this so I started to eat more because I had to for my baby. Well I gained 75 lbs. It wasn't something I was aiming to do of course but I was already battling with Fibromyalgia and was in an abusive relationship so food is what I turned to.

By the time my daughter was 2 or 3 I had gone full out Binging and purging every single day.

During this time I was so sick with Endo but had not be diagnosed, I was nauseated all the time, I had migraines that would last well over 48 hours with the longest being 100+. I felt so sick and the pelvic pain was way to much to bare. During this time I did a colon cleanse as nothing seemed to work at all for the bloating and the bowel/rectal pain this was almost like it was something that was meant to happen because if I had not done that cleanse and suffered so much pain that the 10 cm Endometrioma would never have been caught.

I did find out I had stage IV Endo in 2007, deeply infiltrating, Rectovaginal cyst, Sigmoid colon Mensentric cyst which is rare. My insides were glued together and I had kissing ovaries. I had a PSN (Presacral Neurectomy) done at the same time and the one main side effect? constipation. YAY!

So for me I have never known what it is like to eat without pain because I always have it.

Since that surgery I have had so many complications and have been addicted to enemas for the last 4 yrs. I can't stop. They make me feel better when I am bloated or can't go it is just something I do. I hate myself for it because at first it was because of the pain now its both and now I don't want to stop. Nothing will ever stop the bowel pain I get. No surgery, nothing. My bowels from day one have not liked me. Endo sure as hell didn't help with that.

I was diagnosed with a Wheat, Dairy and Spelt intolerance and I know these effect my bowels a lot but when you are bulimic and you are on all these meds that make you want to eat anything and everything there is no way to stop yourself. I feel like I want nothing but whats bad for me and when I try to eat healthier things I start gagging literally. I am sure its because I have been on and off so many diets to help the endo and the though of some foods like lettuce makes me want to be sick. I will force myself to eat it but I do not like it at all. It is not like I don't like healthy food, but for me stress, endo and meds trigger such bad things and I feel like there is no control whatsoever on my part, I just can't stop.

I am 36 yrs old with an eating disorder that shows no chance of ever stopping. I have lived this cycle for so long that I wonder why I was chosen to suffer so greatly from birth. Why is my body so fucked up? Every inch of my body there is one problem or another and I want to scream my face off.

Well I haven't posted in a while and I will call today Confession Thursday lol.

Wednesday, November 13, 2013

Why Should I help other Endo Sufferers?

I often think "How on earth can I possibly keep up with all the awareness and helping others on Twitter, Facebook and Medhelp" There is no real response I just do.

People in my own life that are in my family or inner circle have no clue what I have been through in the last 23 years. If I asked them how many doctors I have seen in the last 23 years they would probably say 10. Most people who walk among you daily don't even have a clue to what you have been through, how many doctors you have see or how many tests have been done.

I started seeing doctors at the age of 14 on my own. I found that my regular GP wasn't all there however she was the first to say the word "Endometriosis" after a TVUS when I was 13 but only gave me Anaprox and Naproxen to treat it.

Unfortunately by the time I was 17 I had full blown Fibromyalgia which to this day I feel was brought on by undiagnosed Endometriosis and had seen 40+ doctors and specialists by the time I was 32 years old.

Every doctor made me feel like I was making this pain up. My second GP I was with for a couple of years and he did try by sending me to all of these specialists and put me on various drugs but by the time I was 17 he said "I can no longer see you because you cry too much"

So here I am at 17 years old. I have Fibromylagia and no one knows what the hell it is and I start to get even more depressed. The pain is unreal and its all over, no wonder Endo took so long to diagnose because I could not specifically tell them where the pain was because it was EVERYWHERE.

I have had 3 colonoscopies, 2 MRI's on my head, 5 CT scans on my head, nose, and abdomen, 2 upper and lower GI Series done, ANA testing, Celiac testing, a Cystoscopy, 2 colposcopies, 1 leep, a sleep test, about 20 or more PAPS, I can't even count the amount of X-rays, Ultrasounds, TVUS and blood tests from head to toe. I have had nerve testing, multiple ECG testing, instruments stuck up my nose, in my ears, etc. I could really go on but I think you get the point. All of this and nothing really substantial came up. I was told I had Chronic Sinusitis and I was missing a frontal sinus, I had a deviated septum, tinnitus (Tubes put in my ears prior in my teenage years which did nothing), Possible MS, Possible Lymes, Possible Elhers Danlos Syndrome, Restless leg, Major Depression, Generalized Anxiety, Chronic Yeast infections, Thoracic Outlet syndrome, Sciatic Nerve compression, SI joint was seized, Osgood Schlatters Disease, TMJ (surgery), Intolerance to Wheat, Spelt, and Dairy.

That is just part of the testing that I can remember but next is the medications they put me on. First one I can remember is Naproxen, Anaprox, Paxil, Zoloft, Celexa, Cymbalta, Wellbutrin XL, Marvelon, Lupron, Visanne, Amitriptyline, Gabapentin, Oxycodone, Percocet, Flexeril and enough Advil and Aleve to really kill a liver.

After doing this all alone and I mean alone. I know my mother cares now but I don't really think at the time she believed me. So I battled Chronic Headaches, to migraines, to Massive pelvic cramping and rectal pain at the time I was 10-15 yrs old, I would say around that time is when 100% I did the rest on my own.

So when I look back on what I went through the amount of times I contemplated suicide, the side effects of all the medications and the Endo pain that wasn't even diagnosed with until I was 27 years old and what I had to go through I had no choice but to speak for those who couldn't. There was and is no way I was going to keep silent. I will never let my daughter who possibly could end up having Endo go through this or any other person. I was alone, I was depressed and even my family would call me a Hypochondriac. You as Endosisters know what I am talking about and I am sure you have all been through so many of the same situations and/or different.

How can I keep quiet? Why do they not want to help us?

Anyways because of all that I went through I could not imagine for a second someone else going through the torture that I went through. So this is why I help others and not even just Endosisters but my Fibro friends, and anyone with Chronic illnesses because I know what it is like and I would never want someone to go through this alone like I did.

Monday, November 11, 2013

Where would the Pharmaceutical companies be without us #endo sufferers?

I posted an update on Facebook because something bothered me recently and it struck me that we keep all these companies in business and at what cost to us? 

From the time I was diagnosed in 2007 I spent $4500 on 9 months of Lupron injections, almost $2000 on BCP, and around $5000 on various meds such as Visanne, Antidepressants and pain meds. 

So imagine it......179 million women spend around $10,000 in 6 years just on meds alone to treat Endo not including, surgeries, tests etc. Imagine!!!! 

What if we said, enough is enough and we stopped? That would bring down so many Pharmaceutical companies it would be maddening. I wish this is something we could all do but I know there would be no way for this to happen since we suffer so greatly, however if we keep these companies in business and the government really controls those companies we will never get the surgeons we need.

This is so upsetting yet so clear on how we have been taken advantage of and swept under the rug just for the sake of money. We are worth nothing to them and we will continue to suffer because at the end of the day the only thing that matters is money in the pockets of the Pharmaceutical companies and Government.

That is just my thought for the day.

Don't Touch Me! #Endometriosis #exams #TVUS

At the age of 13 was the first time I had experienced a trans-vaginal ultrasound and boy did it even hurt back then. There were no cysts found and the left side hurt a lot when she did the exam and she said that it was possibly Endometriosis but did nothing again for it just gave me some meds to take.

From that day forward I have been subjected to so many Physical exams either by hand or by machine, vaginally and rectally. I even got lucky to have most of them done twice at one time because of interns and because they need to train and what better person to train on than me right? UGH

I approached my last exam recently which happened to be a leep. It wasn't so much that I was afraid of what they were going to do but I really started to get severe anxiety about someone touching me down there period. I started to panic and in the waiting room a lady looked at me and said "are you okay? You seem to really nervous." It was then that I realized that I am done. I want people to stop touching me period. I don't want another pelvic/vaginal/rectal exam I want to be left alone almost to the point that I am probably not going to go see a doctor again because I am that done.

I have had every exam in the book from the time I was 13 to 36 yrs old and all of you who not only suffer with just Endometriosis can totally understand this. If it wasn't the painful sex it was yeast infections, cysts, Endometriosis, PID, High grade lesions on the cervix, rectal pain, bladder pain etc. How many times can someone be subjected to this? I feel so completely violated that I can barely stand my husband to even touch me. I hate it. I want no one to go near me.

It's sad when you think about what this disease has done to us because its not only the physical pain but its also what it does to us mentally. This disease has stolen my life and I want my life back but how? Is that even possible at this point?  

Sunday, November 10, 2013

The Faces of Endo

When I first started this project I didn't expect this many women to take part. Already there are 343 and I think its so amazing. It really puts things in perspective doesn't it? I am so thankful for all these women I have met via Facebook but mostly Twitter. Twitter has been my life line, and whenever I am low there is no other places I would rather be then with thousands of women on at the same time supporting each other. Facebook you have to watch what you say but on Twitter I can be me and it doesn't matter to me what people think. I don't let people I know follow me because I would prefer to have that place as somewhere I can go without being judged. The Faces of Endo has made me realize that there are so many of us and that our voice really needs to be heard. Enough is Enough already. Our own families believe what these doctors say and expect us to get better after surgery or through meds, pregnancy and hysterectomy. They don't seem to understand that 80% of Endo sufferers know more than them. It is really sad to be honest, but what is really sad is that we are living it and at times barely hanging on. When will the world know what this disease is? How loud are we going to be when march together at the Million Woman March? I am going to be loud that is a give in, but I hope that our presents is what does it and catches the attention all around the world. We will not back down, We will be heard and we will not suffer like this anymore at the hands of untrained skilled surgeons or tormented by doctors that have no idea what Endo is and make us feel so little instead of just listening to us. 


Monday, November 4, 2013

Coming off the continuous BCP after 7 yrs

Every now and then I get fed up and want to come off the pill. I have been on it so long and I don't want any medications in my system, I want to go natural. This has been a fight for me since I have been on them.

For me it is great that I don't get a period, I could care less to ever have one again and that is a plus being on the pill however the main reason I have stayed on it is because my body for some reason can't level its hormones on its own. Between the Progesterone and Estrogen one of them elevates and dominates the other. I used to think I was estrogen dominant since I had Endo but lately I have been thinking its more progesterone because when I was on Visanne which is progesterone only after a month I started to break out in red pimple like spots on my face, neck, back and chest. My breast would start to hurt and become overly sensitive and my mental state would deteriorate. When I come off the pill this happens to me like clockwork after the first month, then I get scared and go back on. I just remember mentally how I used to be before being diagnosed and it was hell. I had no control over my emotions however I want off. My body for some reason needs to feel pregnant.

What I find funny is that a majority of Endo sufferers are the opposite, very sick during pregnancy and deathly ill on the BCP. So why is my body different than the majority? People have migraines on them where for me it stopped them.

I used to suffer from chronic headaches from the age of 10 and migraines from the age of 15. The migraines were so debilitating I would end up in the ER because they would hit me and wake me up from my sleep and nothing I took would help and at first they used to last 24 hrs but the last one was 100+ hrs. Once being on the pill I never had a migraine again so that scares me too.

I want to feel normal again, but I also don't want to feel like this if I come off of it.

Have any of you had the same symptoms as me or were you the complete opposite?

Monday, October 28, 2013

Seeking the New Normal- Endometriosis, Chronic Pain, Spoonie- Nancy Peterson

I really found this article very informative and I felt that I needed to share since we all suffer loss of who we are and who we once were. What is normal anymore for us anyways? Will we ever be who we were before diagnoses?

Seeking the New Normal-Nancy Petersen 

(This article was written for women trying to cope with endometriosis but applies to a much broader audience. Others have addressed the lack of understanding in chronic illness, one of the best is the web site "But you don't look sick" and The Spoon Theory written by the web site owner, Christine Miserandino. A community for support, education, and inspiration. Take a minute to read The Spoon Theory, helpful for family and friends trying to understand chronic illness and its impact.)

Waiting for Normal to Return: Newsflash, it’s not going to happen; even if you find a successful treatment or surgery and reach freedom from pain. Normal shifted when you were not looking.
You have been thru hell pain-wise, often diagnostic-wise and sometimes do not get the help you need. Life has changed because of these very traumatic difficult episodes of pain and medical interventions.

While we wait for normal to reappear, we are often in the stages of grief, loss of the quality of our lives, sometimes our partners, our fertility, other times our overall health, loss of the support of those around us, either because we got better and are no longer the dependent needy person on the couch with the heating pad, or because we did not get better but are now stronger, more knowledgeable, more confident in our decision making as we become more educated. As we work thru our losses and our wins if they come, we are looking for our familiar life. Often those around us are looking for our "old self" and they find it hard to recognize and cope with the new, grieving, perhaps stronger, more independent person.
The literature reflects the thinking of several experts in the grieving field, and I have one link posted here.

The 5 Stages of Loss and Grief | Psych Central

While waiting, it gradually dawns on us that where we are now is the first step in the new normal in our lives. Sometimes that is uncomfortable because it is so unfamiliar. And if your life has changed dramatically for better or worse, those around you are pretty uncomfortable as well. The dynamics of your interactions are changing, and it requires joint efforts to reconnect on this new level. Sometimes those re-connections do not go well, and you find yourself looking at a parting of the ways, or intense therapy to try to find the common bonds.

I am aware of cases where women were in so much pain and so dependent that family or spouses were continual care givers. When pain and disability were resolved, these same caregivers no longer were needed in that role. This dramatic disruption of the routines in care giving can add inordinate stress to relationships and family life. When we are prepared for and aware of this potential, we can sometimes talk it through as we begin to see changes take place, or pain resolved. In some cases just accepting that fertility will never be resolved, can be a source of pressure from spouses, significant others, partners or potential grandparents. These folks may not recognize they too are grieving and that what their expectations have been all along may never be met.

For me, the first 18 months after I retired, I was confined to a power chair, not the life I had dreamed of (fishing the Cascade lakes, gardening, hiking the great Central Oregon outdoors). Pain was a constant companion, sleep just never came. Gradually as the diagnostic hurdles began to give clarity to my situation, it was clear unless I figured out what this new normal was going to be like, and adapted to it, I would never get out of the chair nor have any of the retirement about which I dreamed and planned. (actually this was a very good lesson in : Life is what happens to you while you were making plans).

Physicians now in charge of my case began vigorously working on getting pain and stability under control, still no one saw me casting a fly line or turning a garden bed anytime in my future. I began to read about adaptive gardening, got a power scooter that would work better in garden paths, found an old tractor with a front end loader on it, ( I could barely even get up on the tractor when I first got it, I was in such bad shape). I found some help to build raised garden beds in exchange for organic vegetables. I found ways to bring water to the beds so I did not have to pull hoses around. This is enough of the story, to try to show, I think, building a new reality with what physical capacity I had left, could maybe restore, or could adapt around. I think you get the idea, that instead of muscling thru, which I could not do I tried to find a way around. I had to let go of a little, though, too. My spine simply will not tolerate fishing, so a little interest in photography began to fill in those gaps.

I hope I have at least given you the idea that if things don't return to normal as you want, you can begin to create a new normal. It may take some experimentation, trial and error, and even developing new tools or hobbies, or lives. But in time you can do it. Let go of searching for normal and move on into a new way of being with whatever resources you have or can muster.

Here is the article for the 5 stages of Grief

Parenting & Endometriosis (PPD/Co-Morbid Diseases)

I read an article that inspired me to write about this topic. Not only was I not diagnosed with Endometriosis at the time but I was a single mother living with Fibromyalgia and Chronic Fatigue syndrome.

I was diagnosed with Fibro when I was 17 yrs old, so young that people would not even listen to me when I talked about. I suffered debilitating fatigue and could barely function and the body pain I experienced was so unreal that I had a hard time even explaining it to doctors because I hurt all over. I really think that because of my uncertainty is why it took 14 yrs to diagnose Endometriosis.

I became pregnant during an abusive relationship (sexually, physically and Mentally) while trying to find a pill that I wouldn't continuously bleed on. I was 23. I couldn't believe I was pregnant, I was so upset because of the circumstances I was in, how could I raise a child in this environment I was living?

The pregnancy itself for me was great as I never felt better, I was never sick, nauseated or anything however the stress from the abusive relationship was coming to the point that I wanted to kill myself. I remember sitting there after the floors had just been varnished and no one was supposed to be in there but I was there wanting to die. In my mind there was no way I could continue this relationship without my daughter being abused.

When Grace turned 5 weeks her father was mad at me for God knows what as it was all the time, that he took Grace and and slammed her on the couch. I lost my bloody mind. I called the police and they escorted me out. I left his 5 yr old son behind as there was nothing I could do for him and there would have been no way I could have helped him if I could barely help myself. He eventually stopped communication after I told him I would call the police if he ever called me again. Court ordered supervised visitation with my parents in which he never to this day followed through nor did he pay for child support.

I was completely alone, exhausted, mentally breaking down. I didn't know how much longer I would be able to cope with the Chronic illness I was suffering from and raising a child on my own with absolutely no help whatsoever.

I managed to get into subsidized housing but as soon as I went back to work the rent went up plus I had to pay for child care. To this day I have no idea how I managed at all.

From birth to age 4 I can't even remember being there mentally. It was during that time I saw this ad on TV about postpartum depression and realized that I had undiagnosed PPD that turned into Manic Depression because it was never treated. I went to the hospital told the doctor what I was going through and he gave me sleeping pills and told me to go home. He didn't even offer any services that could help me just "Go home and sleep it off".. Well lets see, I had the most spirited baby who could not be picked up, put down, held, fed etc. All she did was cry at at times slam her head down in the floor because she was frustrated. She would cry as a baby for 5 hrs straight.

At its worst moment I finally went to see my doctor at the time as I was losing my marbles literally. I was seeing demons in my room at night and I was just not sleeping enough. The doctors secretary booked me in and when I got there I realized she must have squeezed me in because of how urgently I needed to talk to him. Well he comes over to me and says "What exactly is your problem today that you have to bud in front of all these kind people?" Are you fucking kidding me? I looked at him and told him to "fuck off" and walked out and bawled all the way home. I had no one. I wanted to throw my child and then kill myself I was that messed up mentally. I even called my mother and she said to me "I had 3 kids I never had PPD either do you?" Good Lord. Why did people not want to help me?

So with all of this going on such, as going back to work, Court hearings, affording child care and rent with no other income but my own, no one to watch her ever, Fibro flares and exhaustion were really sending me over the edge not to mention I was having more migraines than ever at that time. Random too.

When my daughter was 4 I decided to do this colon cleanse as I was having such bad rectal pain and was always constipated. Well I have to say I need to thanks Colonix as that was when the pain got so intense I went to my new doctor and had an ultrasound done. There they found a 10 cm Complex cyst on my left ovary. During that time I was put on Marvelon continuously to try to "shrink" the cyst and it was night and day with my hormones. I couldn't believe how I great I felt on the pill. I couldn't have cared less of what was going on inside of me because for the first time mentally I was stable.

In 2007 at the age of 27 I was finally operated on and diagnosed with Stage IV Endometriosis.

Looking back now I feel that a lot of the mental anguish I went through was due to Endo and my hormones being whacked out. Also I really strongly believe that the Fibro I was diagnosed with was induced by the Endo and the Chronic Fatigue was actually the Endo as well.

I am at a good place in my life right now by I am still Chronically ill. I love my daughter so much and I feel that some days I have let her down so much as a mother as I can't do the things she wants me to do at times. She is a very high maintenance child and always has been. She saved my life literally. I would not be where I am today if I hadn't gone down the path I did and rose above all circumstances if she wasn't in my life.

So although there has been some really crappy days the good ones outweigh the bad. She understands the spoon theory and she gets when I am tired. She is 10 yrs old now and I am not sure what she will think of me when she is older but she definitely has empathy since she has seen me go through such low times.

Living in Chronic pain with co-morbid diseases and having a child is an incredibly hard time and I did it alone so I wouldn't know if you had someone helping you if it would make a difference. All I know is that I made it and I am glad I didn't take my life or hers and that I can look back and see how very far I have come.

Would I do this again? Hell no.

Wednesday, October 23, 2013

Suicide & Endometriosis

I think this topic is a very important one to talk about and what peaked my curiosity was the fact there are no statistics really for this. Yes people commit suicide because of Chronic pain, Depression, Bipolar etc however what percentage of those people had Endometriosis and was triggered by the disease, the amount of care and understanding they got or the Hormone med etc.

I have posted about this girl named Kristi An Rose before but I think it should be brought up more because there needs to be awareness raised about Suicide and Endometriosis and that her life was not taken in vain. She deserves recognition for the fight she went through as well all know can be so debilitating and painful. Her mother wants her story to be told and why she died so that no other female will go through what she did and now even 4 yrs later we are still no further with awareness.

Click on the photo for her story

I have suffered from Depression since I was 10-11 yrs old and that is when the chronic headaches started. By the time I was 13 the Chronic pelvic pain started, Migraines by 15yrs that would leave me hospitalized, Fibro by 17yrs old and finally after 14yrs of the onset of Menstruation Stage IV Endometriosis. I have contemplated suicide more times than I can even count whether it be the treatment from doctors, the massive pain from Endometriosis, Relationship deterioration because of the disease and sexual dysfunction, The hormone medications you are put on to supposedly "Help the Endo from Growing" make you feel so isolated and alone and no one could possible understand what you are going through unless they live it. This disease has robbed my life in more ways than one. Last August I was prescribed Visanne to "treat the endo" and by month three I was so far mentally out of it and depressed that I was sitting in my car wanted to die that moment. I sat there for an hour and cried and in the end my daughter is who I thought about and why I didn't take my life that day. I could never ever make her feel the pain of me committing suicide because I would have totally changed the course of her life and I know her personality I am her world but for that hour the thoughts would not leave me. I wanted to die, I was done, done with the pain, done with the doctors and how after 23 yrs I am still treated with absolutely no respect for my well being or quality of life this disease has left me with. I chose to live not for me but for my daughter and that is the only reason I am alive right now because if I did not have her I would have offed myself a very long time ago. 

What I have learned in the last year from Dr. Redwine has made me open my eyes and see the facts. Nothing except complete excision (cut out to the root) will give you any kind of relief, no medication, not laser surgery etc. The fact remains that we are still suffering and no one seems to care. We don't have the surgeons that are skilled with this disease. Hormones work for certain people and not all and some are worse off being on them and they do NOT stop Endometriosis from growing, they do NOT suppress Endo, the purpose for these meds is to stop ovulation and periods therefore hopefully stop the pain but if you do not have excision surgery the chances of that even helping are minimal and the side effects are just not worth it so you end up in debilitating pain unnecessarily. 

I asked this question about the stats on Suicide and Endometriosis on the great EndoMetropolis page on Facebook that is run by Dr. Redwine and Libby Hopton. Libby had some great information for me about this. Please read her response to me below. 

"No formal studies. Of the limited research undertaken into the comorbidity between endometriosis and psychopathology, a strong association has been found between endo and depression (unipolar and bipolar) and anxiety. Probably no surprise. I think several mechanisms are likely at play though (not 'simply' the emotional impact of this disease and the pain and debilitation it often causes)... the disease itself could potentially contribute to or underlie cytokine-induced depression"
"Here's part of a paper I wrote on the subject. I can send the accompanying reference list/literature separately if useful."

Research on the quality of life of women suffering from endometriosis reports a significant negative impact in all domains of life, including mental health (Nnoaham et al., 2011). Of the limited research undertaken into the prevalence of psychopathology in women with endometriosis, depression has been identified as highly prevalent among these patients (Ferrero, Giordano, Abbamonte, Ragni, & Ramorgida, 2006; Lorencatto, Petta, Navarro, Bahamondes, & Matos, 2006; Sepulcri & Amaral, 2009). Prevalence rates of depressive disorders in cohorts of women with endometriosis with associated pelvic pain range between 46% and 86% (Ferrero et al., 2006; Lorencatto et al., 2006). Even in women with endometriosis who are asymptomatic, the prevalence of depressive disorders has been observed at 38% (Lorencatto et al., 2006), markedly higher than the estimated prevalence among women in general (Weissman & Olfson, 1995).

Several possible mechanisms may be involved in the heightened tendency towards depression in endometriosis: Hormone therapies employed in the palliative treatment of the disease have been linked to depressive symptoms (Warnock, Bundren, & Morris, 2000); infertility, regardless of cause, is associated with repeated losses, feelings of guilt and reduced self-esteem (Abbey, Andrews, & Halman, 1992; Mahlstedt, 1985; Sbaragli et al., 2008); and the impact of chronic pelvic pain on a patient’s personal and social relationships, work, and leisure time could contribute to the emergence of depression (Fourquet, Baez, Figueroa, Iriarte, & Flores, 2011; Nnoaham et al., 2011).

Furthermore, the inflammatory response of the immune system triggered by the presence of endometriotic lesions may play a role in the onset and maintenance of depressive symptoms in these patients (Nasyrova et al., 2011). Intraperitoneal studies in women with endometriosis have found that ectopic endometriotic lesions secrete chemotactic molecules, which in turn instigate the activity of immune cells in the peritoneal fluid, triggering cytokine release (Gazvani & Templeton, 2002; Harada, Iwabe, & Terakawa, 2001; Oral, Olive, & Arici, 1996). Women with endometriosis have been found to have an increased concentration of proinflammatory cytokines in the peritoneal fluid and blood serum, including interleukin-1 (IL-1), interleukin-2 (IL-2), interleukin-6 (IL-6), interleukin-8 (IL-8), and infereron- ɣ (Barcz et al., 2012; Nasyrova et al., 2011).

The role of cytokines in the aetiology of depression has received ongoing focus in the literature (for a review see Raison & Miller, 2011). Individuals with system-wide elevated concentrations of certain cytokines due to underlying chronic inflammatory disease commonly present with symptoms of ‘sickness behaviour’ (see table 1) (Dickens, McGowan, Clark-Carter, & Creed, 2002; Dunn, Swiergiel, & Beaurepaire, 2005; Foley et al., 1992; Minden & Schiffer, 1990). Likewise, the majority of patients undergoing IFN-α protocols involving sustained cytokine exposure for the treatment of Hepatitus C and certain cancers experience sickness symptoms shortly after commencing treatment (Gohier et al., 2003; Raison, Demetrashvili, Capuron, & Miller, 2005). There is considerable homology between some of the symptoms of sickness behaviour and the diagnostic criteria of idiopathic Major Depressive Disorder (Capuron et al., 2009). Several cytokines have been identified as possible markers in the emergence of sickness symptoms, including IL-1, IL-2, IL-8, LPS, IFN-α, IFN-β, and IFN-ɣ (Gohier et al., 2003; Kent, Bluthe, Kelley, & Dantzer, 1992; Levine et al., 1999; Maes, Bosmans, Meltzer, Scharpe, & Suy, 1993; Musselman et al., 2001; Nasyrova et al., 2011; Owen, Eccleston, Ferrier, & Young, 2001; Valentine, Meyers, King, Richelson, & Hauser, 1998).

Table 1
Sickness symptoms
Hypomotility (Lethargy)
Hyperthermia (Fever)
Hypophagia (Anorexia)
Decreased interest in activities
Decreased sexual activity in females
Increased time spent sleeping
Physical symptoms (headache, muscle pain, nausea, and shivering)
Note. Adapted from Dunn et al., 2005

Monday, October 21, 2013

OHIP Turns a blind eye to suffering

I wanted to write about an article that I had read not too long ago and since I am in the process of fighting for out of country surgery it would be good to talk about.

Here is the link

The same surgeon who is being scrutinized is the surgeon that operated on me in 2007. He refused to operate on me and wasted my time for at least 2 yrs and put me on Lupron saying that if the fluid in the cul-de-sac went away it was Endo and he would operate. Well I went back to him after the 3 months of hell and he didn't do an internal ultrasound just told me it wasn't Endo because I was having pain still. He is ridiculous. He also knew that I was going to the Wasser Pain clinic and told me the surgeon there was good and that he trained her and if she agreed to do it then he would do it. Does that even make sense to anyone? So I wasted 2 yrs taking days off work to go to these appointments only to be told I had Neuropathic Pain Syndrome not Endo and sent me off to a baby doctor who botched my surgery.

That being said I am not going to get a referral from this surgeon as the article says "Only one specialist held an open door to her care, a Canadian schooled almost entirely in Ontario. But Dr. Ken Sinervo had committed a Cardinal sin as far as OHIP was concerned -- he offered life-changing surgery outside the country in Atlanta, Georgia."

How is giving the patient the best care a Cardinal sin? When will Canada wake up and realize that we do not have the surgeons available to even come close to providing quality of life?

I am filing my appeal today so we will see how this goes. It doesn't look promising and it becomes more depressing as I think about how my future will be. I have the top surgeon who won't operate, another who botched my surgery and said it was too complicated and closed up and now I am left with no one, how is that fair?

Sunday, October 20, 2013

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.

Friday, October 18, 2013

Weight & Endometriosis

The battle of the bulge is what is what I like to call it. Chronic inflammation, Bloating, weight gain and pain.

We as Endosisters know all too well how much of a problem this is, how annoying it is and how painful it is.

I am Wheat, Spelt and Dairy intolerant so I do my best to remove those from my diet but really it is hard isn't it? I have tried every single diet known to man and there were very few that helped. Paleo takes away all grain and dairy and for me that did help with the pain in the bowels that I get but I still felt bloated.

The hard part with dealing with this problem is medications and hormones because you are constantly craving carbs and usually bad carbs and complete junk. Well for me that is the way it is for sure.

Since my first surgery in 2007 the same year I was put on Marvelon continuously after Lupron I have never been able to keep weight off and I am constantly bloated all the time. I don't get a period which is great but I hate feeling like I am pregnant all the time.

It has been 6 yrs now and I have been on at least one med that entire time so the chances of anything changing for me is minimal. I would say however I don't exercise because of the extreme chronic fatigue from the Endo and Fibromyalgia. I am tired and have no energy ever so I can see also why the weight seems to stay on.

Where does the weight go with you? Mine for sure is in the thighs, hips and Belly. Never to the place where I want it to go like my breasts LOL..

I know that Diet, lifestyle, and exercise are key to combating this problem but as any Endosister knows sometimes its just quite impossible and you get down on yourself. It is like a vicious circle.

What do you do to help with Chronic inflammation, weight gain and bloating?

Thursday, October 10, 2013

Bowel Pain and Endometriosis

Today I am going to talk about Bowel Endometriosis. The symptoms for Bowel Endometriosis are;

  • Painful bowel movements
  • Constipation
  • Diarrhea
  • Alternating constipation and diarrhea
  • Intestinal cramping
  • Nausea and/or vomiting
  • Abdominal pain
  • Rectal pain
  • Rectal bleeding

When I was 7 I had bowel surgery for Intestinal Volvulus and I feel that a lot of the symptoms I have including having Endometriosis on the bowel contributes to the pain I suffer in daily. Food is my enemy on every level.

From the time I was born I would regurgitate a lot of Dairy and wheat so finding out I had an intolerance to Spelt, Wheat and Dairy made perfect sense thinking back. My pain level from surgery at 7 yrs old until I was 14 yrs old was not bad at all in my bowels.  I never had side effects from the surgery and because I was young I guess I healed quicker than an adult would.

When I turned 15 I started to get severe rectal pain. Sharp stabbing pain that would come on at anytime. I never put two and two together with my period because this pain would be random. However the day before my period my bowels would completely evacuate and that was very abnormal for me as I was always constipated. That was the indicator for me to start popping Aleve or Naproxen whatever I had on hand. If I didn't and I waited and my period came I would be in for it because no med would help at that time. During the course of the week during menses I would become constipated again and the pain would be so intense until around the 5th or 6th day when I could finally go then the pain would subside to tolerable cramping (if that is even what you would call it)

I finally went to see a Gastro and she performed a colonoscopy at 15 yrs old and found nothing called it IBS. UGH!!! Never believed it but had no choice to let it go since every test I had came back negative.

During my surgery they found and removed a recto-vaginal nodule, a Mensentric cyst (Mesenteric cysts are rare and are found in approximately 1 of every 100,000) in the sigmoid colon plus bowel Endo. The doctor shaved and cut out the Recto-vaginal cysts and I was told all the Endometriosis was removed.

After all that was done the rectal pain disappeared, it no longer hurt to have a bowel movement but I was still constipated, so instead of being 7+ days constipated it was 3-4 days before I could go.

Three years after my first surgery in 2007 I started to get bad pain the right side underneath my 3 inch laparotomy scar it was like the stool was getting stuck in that area and would become trapped and you could see a huge lump and the pain was intense. Also it coming down the rectum I started to get a sharp knife like pain and would feel like it ripped me. I started to do enemas after my surgeon told me that it wasn't Endo and to move on. How can someone move on in this sort of pain? That is the one thing I never understood about this doctor at all. Needless to say had to find a new doctor because he refused to operate on me again because I was too high risk because of the damage done from the first surgery.

While waiting the 3 yrs I could barely digest food, so no raw uncooked food, no meat, no wheat or Dairy because it would just make things worse, so I had to juice and have soup and soft foods like mashed potatoes and rice etc just to eat and not feel pain. I was doing 3 enemas a week just to not be in pain and to be able to go to the bathroom.

In February of 2013 I finally convinced a surgeon to operate on me after an entire years hopped on meds that I knew wouldn't help me just to satisfy them and tell them again that the pain is still here the meds have done nothing!!

I did have a partial bowel obstruction from adhesions as well as an embedded ovary and ureter in the same area. My left ovary was stuck to my uterus and the uterus was stuck to the bowel. Needless to say the surgery got too complicated and she closed up leaving the organs embedded into the pelvic wall only to cause me problems later. UGH

So here I am in pain when I eat. It is like my body is rejecting food and can't break it down properly. I have no idea what to do next or if this is a permanent thing thanks to Endo and taking 14 yrs to diagnose. I feel that I have to accept that the damage has been done and it is not irreversible and that I have to come to terms with this being my life. Right now I am just not there yet.

Wednesday, October 9, 2013

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.

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?