Happy 4th Hysteversary!

It has been a long crazy ass ride to be where I am at today since my Hysterectomy May 9th 2014. 

The hardest part about my hysterectomy was that I didn't considering the mental health aspect. Before going into surgery I knew that my chances of relief was 50/50 and if it got worse it would be really bad. I took that chance anyways because it was destroying my quality of life and my doctor (s) kept making me think it was all in my head and I was just so done trying to prove the disease was there in order for them to believe me. It was utterly exhausting especially since I already had a diagnoses. I just can't understand the circles they put us through in order to save face. I would have been happy to have a doctor admit that there is nothing more than can do than tell me that I am looking for a problem when there is no problem. 

There has been some pro's and con's and it is fair say they are equal. 

The mental aspect of surgical menopause is what destroyed me the most. I could not get out of this crazy never ending psychosis (that is what I call it) They were the most darkest days of my entire life and I have been through a lot in my life besides having Endometriosis and nothing compared to what I went through the last four years. I felt like was going to be trapped in that mental state forever. I stop talking to anyone around me and stopped even cooking half of the time for my daughter. I mentally did not know if I was coming or going all I knew was that I was not well. 

I was in a bad car accident December 23rd 2016. I was hit at high impact on the highway driving to work and when I pulled over to the side of the road another car clipped my mirror causing me to panic. I was stuck in a crisis state for almost a year because of this accident. It also knocked me out of whatever psychosis or disassociated state I was in. Funny enough the accident was my saving grace. 

I have spent the last two years focusing on getting better mentally and physically. Things are finally going well and I have an appointment with a new family doctor close to my house so I am hoping that she doesn't mess around with the medications that I am on. The reason I haven't left the doctor I am with now is because she will give me 3 months worth of meds at a time with three refills. As a chronic pain patient you need that or you become stressed thinking that you are going to run out, or maybe that is just me. 

So now that I am clear headed and it has been four years  I now need to address the bowel and bladder symptoms I am having. My bowels were fine up until this last year. There has to be some scar tissue in the recto-vaginal area as well as bladder. My bladder is done and does not like me at all. When I bend over I pee, when I walk I pee,when I lie on my stomach I pee. I was on a catheter for 11 days after my surgery because I had problems urinating after surgery and it is worse now. 

I decided that it was more important to deal with my mental health and jaw before embarking on this Endo journey again and now that I have done that, its time for me to move forward. I can't go back to my original surgeon because of how he treated me before and after my surgeries and because I am still healing from the medical neglect aspect which brought on PTSD symptoms.

I have a referral to see a new surgeon in Toronto so I am hoping he can help with something other than surgery to relax my pelvic floor and to help fix my bladder. I need someone that is going to listen and not dismiss me and this is where it all starts doesn't it? The fear of rejection, the ridicule or just outright abuse from doctors. I don't think mentally I could take anymore of that so I cross my fingers and hope for the best and try to calm the fear I have of doctors. 

I thought I was prepared for this hysterectomy but I know now that I wasn't. I don't miss having a period at all, or the pain that comes along with that. I don't miss the pain meds that I had to take in order to stop the pain from coming or handfuls of aleve, and I don't miss all the disease that was growing inside of me. I miss my nice skin that I used to have, now my skin looks aged by 10-20 years and I have started to get brown spots on my face, I assume they are aging spots. I miss the body I had before my first endo surgery in 2007 because it didn't come with this hysterectomy tire around my waist which is a bitch to lose. I don't miss not being able to have children because mentally there is no way I could take care of another child because it is all just too much. It makes me sad for anyone that I date in my life because I can't give that to them. The sound of babies still trigger anxiety and panic so I am thinking not having to go through that again will help me recover from that too. 

I don't miss advocating but I do miss helping others out because I am still that same person that would help anyone get the treatment they needed and deserved. There will never be a time where I would advocate full time like I was because I take everything personally and get ticked off when people don't listen when you are trying to help them. I also don't miss the cat fighting and bickering in the endometriosis community which has left us looking like hysterical women. I also don't miss the doctors who all claim they are the best but don't actually help us get anywhere and just want kick backs and fame. There is a lot that I don't miss.  

Every time I think this journey is over I am smacked back to reality that I am never going to be rid of this horrific disease. The one thing that helped me was to accept everything about this disease especially by body. I accepted the battered, scarred and distorted body that this disease left me with because that was the only way I was going to be able to move forward. I decided that not only do I have to accept it but let it go because you only get this one life to live and I don't want to spend it living in misery or bitterness and worrying about something so superficial as this tire around my waist. 

I leveled up instead and I started to eat whole foods at the beginning of the year as part of my 2018 goal to lose 40 lbs. I really have been doing well (lost 23 lbs so far) but like others diet doesn't change the way I feel physically but it helps mentally knowing that I can lose this weight if I really tried and pushed through the pain. My goal this year isn't to get toned it is to love myself and nourish myself and to stop self sabotaging and hating myself. It is funny how a disease can totally take hold of you entirely. 

I now stop to notice everything and everyone and I am hyper aware of all that goes on around me and I am grateful for each day that I am alive and able to have one more day on this earth. This disease may have stolen decades of my life but I am not allowing that to happen anymore. 

Lets hope one day a cure is found but until that time don't let this disease own you it is the worst thing you can do. 

XOXOXOXOXOX

Was this all due to Surgical menopause?

It has been a year and half since I wrote my last post  and all I can tell you is that I have never been so sick and low in my entire life. I am not even sure that if what I went through was menopause related or a total and complete mental breakdown. 

It has almost been four years since my hysterectomy and I barely remember any of it. I want people to know what it is like to recover from surgical menopause because there is no information out there that tells you how fucked up and crazy it is. My mother would often remind me that she went through the same when she went through menopause but this is the same person who doesn't even understand the disease or wants to understand it and I have tried many times to educate her. I don't know how many times I told her that it is not the same but till this day she thinks it is. I no longer discuss my illnesses with her at all which has helped me heal mentally. 

I am not even sure how to even put this into words and I guess that is how my life felt for all that time. I went into full blown dissociation state and was trying to deal with being in crisis for that entire time. My heart hurt like crazy, I thought I was having a heart attack and that it was only time before it actually happened. The pain never went away until the summer of 2017 after I checked myself into a partial hospitalization program and was able to get on different medications. 

A lot happened during the last four years including some good things. I have come so far from where I was I feel like I am a completely different person. (I will get back to this later in the post)

After my hysterectomy I stopped doing everything, including living. I was overwhelmed by the hot flashes but it was not as if I had them all the time but they were scary that was the problem. The first one I had, I really thought I was having a stroke. I was sitting in my car and then suddenly from the waist up I started to heat up and heat up and I felt like I could have melted wax on my body that is how internally hot I felt. It rushed all the way up to my head and lasted over an hour. I should say also that I had every single thing removed including both of my ovaries. During this time I was on Prozac and I should have listened to my dear friend Katie (Endohappy) to try to do it naturally before I went on an antidepressant. I have suffered from Major Depressive disorder since I was 15 years old and around this time I was either low or fucking rock bottom low. I felt nothing emotionally and I needed to be on a medication. Little did I know was that the antidepressants were causing a majority of my hot flashes and I didn't even realize that until a year after my hysterectomy. 

Then came the cold flashes.. Yes COLD FLASHES, what the fuck. No one told me about those and I had no idea they even existed until I started to get them. Nothing I could do could keep me warm and I would lie there and shake for hours with 3 comforters on, a sweater, t-shirt, tank top, jogging pants, and two pairs of socks. It was horrific. They did not last long, maybe around 4 months but I would have taken a hot flash over those any day. 

Around 6 months after surgery I lost all feeling in my arms. They went numb, they swelled up, my fingers were sausages and I could not bend my arms. This lasted 3 months and because of Canada's wait times I couldn't get an MRI and Neuro check up done to see why it happened until everything started to heal so I never really got answers other than I had mild carpal tunnel but that wouldn't have caused that to happen and two years later I was told that I didn't have any signs of carpel tunnel at all doing the exact same test. (story of my life)

I started to get a fibro flare that seems to have lasted a couple of years. It was non stop pain. I could barely get out of bed because I felt that I was shit kicked every single morning. Every morning I would stare at my wall once I opened my eyes and say "I can't go on" but I would have to really force myself to get out of bed because I have a daughter and 3 animals at the time. I had no support so it is not like I could just stay in bed. My doctor to this day doesn't even have a clue what I went through and I was in her office every week/month for the last two years. She refuses to fill out the disability paperwork even though I talked to CRA myself and my condition was valid and I could get a tax break. This is the bullshit I have had to deal with. I had no other options. 

Dec 23rd 2016 someone slammed my car from behind at high impact on the highway and I ended up with severe whiplash. I noticed that there was a pain clinic one km from my house and at the time I was so lost on where to go because Wasser the pain clinic in Toronto was horrible and I was desperate so I called the new place near my house and all I needed was a referral from my doctor in which she did. I have to say this was one of the best things that happened to me. Almost everything was covered from nerve block injections, trigger point injections, infusions for the fibro and even was asked to be apart of a workshop and got free Botox worth $2000 so needless to say I was finally starting to get some relief. 

At the same time I was getting help at the pain clinic I was also in a severely suicidal crisis state and I started to become so introverted and would not leave my house unless I had to go to work. No medications were helping and I had at that point tried over twenty anti depressants since I was 15. 

This is around the time I ended up in the ER due to bad reactions to Abilify which caused Akathisia and my god that almost sent me over the edge. I was just dangling by a thread at this point. I was belittled in the ER because the intake nurse thought I was in the ER for little old restless leg syndrome, like come on already. Since I was suicidal and could not get out of crisis (I didn't know it was crisis at the time) I told them that I needed to get into a DBT program that didn't make me have to take off work because I could not afford it. He put a referral in the PHP program and also gave me a new script which only made things worse again but I was just happy it wasn't the Akathisia. 

So here I am in severe mental crisis state, suicidal and dissociated and I was still working. I was also going to physio and massage therapy from the car accident twice a week on top of the twice a week at the pain clinic. So every day I was just going though the motions. I wasn't sure if all of this was from my hormones, fibro, PTSD, Major depression or that I was literally losing my mind. I should mention that I was drinking a bottle of wine a day to numb the pain from my body as well as from my mind. Yes I know that was not making things any better but I was not getting better at all and I had no where to turn. It was like I was on a merry go round and it was at the fastest possible speed and I was just going around in circles watching everything go by and standing outside my body. 

The thing is I have so many other co-morbid diseases like severe TMJ so I was also on Oxycodone for the pain, Flexeril to relax my jaw and that with the wine and Zoplicone (for sleep) caused multiple blackouts ending in me peeing myself, and waking up doing really weird things or waking up with things all over the place. I wanted to die, I was hoping to die, I was trying to die. I just didn't want my daughter to find me. I would say every night "please don't wake up in the morning"

This went on for 3 years and there was no end in sight. 

Rewind back to the beginning of May 2017 I was given Naltrexone and nabilone from the pain clinic which is used to treat chronic pain. The nabilone was not covered so I ended up getting my marijuana card instead. It was the naltrexone that helped me stop drinking wine completely as well as helped me get off my sleep medication. This caused severe dementia like side effects as well as major cognitive dysfunction. I am almost a year from this date and I still have some residual cognitive issues. I would be talking then just stop and have no idea what I was saying and people would be looking at me and waiting. in my head I was crying because I had lost all my short and long term memory. It was like I had amnesia. I would watch a movie and could not remember one scene to the next it was horrific. What made it even worse is that when I would drive to work I would forget where I was every single day. I was out of it. So out of it that people thought I was ON drugs. I am still trying to process everything that happened during that time.   

When I finally got into the PHP program it took five weeks in order for me to see a psychiatrist and she put me on Wellbutrin, Trintellex, Risperadal, and clonazapam and within the week I was stabilized from being in crisis. 

It was then that I finally became stable and when I say stable I mean mentally able to have a conversation with someone without feeling like I am stuttering or falling over my words. I guess last year without me realizing it was a year of healing. I didn't realize how much I had accomplished and what I went through all of last year and since now I am able to reflect back I am in awe of my own strength, perseverance and persistence to get better. 

I actually decided to show people on Facebook what it is like living with Chronic pain. and this was my post 

"I just wanted to share the impact that Chronic Pain has on people, specifically myself. I know many of you know my situation, but even those closest to me do not even know the depth of it .

I had my first surgery when I was 7 years old. My large intestine started to grow inside the small intestine and so I needed an emergency bowel resection and appendectomy. Things were fine until I was diagnosed with TMJ when I was 15 (2 surgeries) Fibromyalgia at 17 years old and Endometriosis at 27 years old (3 surgeries) and due to the suffering and poor treatment from doctors (and other traumas) I developed complex PTSD to go along with my major depressive disorder.

The last few years I went on a downward spiral to what I call hell. My body just could not handle anything else and it began shutting down. I honestly have no recollection of the last 4 yrs of my life and have no idea how I worked all the way through it for the most part. I kept telling myself that I couldn't afford to have a nervous breakdown but when it happens all you can do is ride it out and hope for the best. I am so much better now but it cost me a lot mentally, physically and financially.

Last year alone

1) I saw 15 different doctors and specialists

2) Had 109 appointments (=25 days)

3) 290 trigger point injections in my neck and back

4) 440 Nerve block injections all over my body

5) 29 infusions 

6) 5 trips to the ER

7) Short term leave 15 weeks (=75 days)

8) Partial Hospitalization program 8 weeks

9) Paid out of pocket $5000 in medical expenses not covered and I have a drug and healthcare plan at work. 

10) I had to to cash out my RRSP's so I wouldn't lose my house

11) I had to refinance my house twice in one year so I wouldn't lose my house.

I almost lost my house three times and it is quite possible I could lose it down the road but right now I am safe and can finally say that I am home.

I have no way to pay back those people that were there for me and helped raise $10,000 for Grace's gymnastics. You guys will always have a special place in my heart.

I have so much inside of me that I need to let out and I don't know how to do it and I feel trapped inside my own body. For the last 3 months I have been dealing with bursts of anger which I can't control and I haven't had for decades..

Every day with Chronic pain brings something new. A new symptom, a new pain, a new doctor, new medications, new treatments, new tests and the cycle just keeps going around and around. There is no way off this ride but if I have learned anything from this nervous breakdown is that I have to stop doing things for everyone and I need to take care of myself and that is something I stopped doing when Grace was born.

My grieving process is now over. I can finally let go."

I feel so bad for people that are on my Endo Facebook page waiting for me to finish this video. I swear to God I have gone back and forth this entire time telling them it was coming and I really had full intention on doing it but the further I pushed back it just seemed like it would never happen. To b honest I never even thought I would ever write another post on here again but here I am and video is going to happen as well as my books but recovering from all of this has really been long. I can say that I mentally have 90% of my cognitive function back and I am taking more time for me so that I can heal as much as I can. My only goal last year was to stay alive and this year was to heal and lose 40 lbs and I am 22 lbs down right now so I am pretty happy. Day by day I am taking my life back from this horrible disease and I have come across so many amazing doctors that my PTSD and fear of doctors has started to get better. I have an appointment with a new GP next tuesday and she is also down the street from my home so I hope it works out. I also have an appointment soon with another gyno to see if he can do something about my bowels and bladder (That I will leave for another post)

So my friends who have stood beside me or checked in on me I thank you. I almost gave up but I came back better than ever and I am going to get that movie done, come hell or high water. 

I love you all.... I am finally back :) 

PS- Sorry my words and sentences are all over the place. I am still mentally trying to connect the dots. 

Celebrating small victories & moving on

I felt it was time to post some small victories that have been taking place in my life. 

As most of you know I am almost hitting my 2 year post radical hysterectomy for Endometriosis and I haven't taken any HRT to date and I was a mess for most of this time period. (See prior update here)

As of today I am almost 100% drug free (sleeping pill being the last) and I have barely touched a glass of wine in over a month as well. I really feel accomplished and happy that I decided to come off all of it.  I decided to take the risk of dealing with the Fibromyalgia pain without medication and have been actively meditating since October 2015 to help cope with anxiety and major depression. 

I know everyone's journey is so different on all levels as well as how you feel post hysterectomy and I really feel for me that for some reason my body was allergic to my own hormones. Mentally they really messed me up including migraines for over 15 yrs, depression, anxiety, acne, up and down moods, and constant craving for carbs. I feel as though I have definitely improved in this area but it wasn't easy as I struggled for the last 2 yrs post op just trying to survive. It was a horrible ride and I really don't know if it is completely over but I am moving ahead with my life if it is or not. 

I have realized that Endometriosis controlled 15 yrs of my life due to delayed diagnoses and after my first surgery in 2007 it completely took hold of my every thought and move. I spent the last 4 yrs on-line everyday on various social media outlets as well as Medhelp 24/7 and I have come to the conclusion that if I continue to live my life this way I am actually going to miss life in general and I have come too far to let "THIS" be my life on earth.  

I let this disease control my life and I have decided that after the Endo March in Canada May 7th, I will no longer be as active about raising awareness online. I am going to keep up my blog because for me this is my outlet and some people want to hear from me but basically this is it (Maybe I will start a new one with fun things?). I can't keep draining my own soul in order to do for others and I have been running on empty now for the entire 4 yrs I have actively been raising awareness. 

I didn't come to this conclusion overnight it has been a long time coming. I love all the people I have met over the years and I love that there are so many more advocates out there now more than ever but it is time for me to step down and finally move on. I realized how permanent I need to make this because for the last 9 yrs I have not made a video for my daughter. I used to make them all the time. Her first time riding a bike, singing, parties, etc. I have totally not mentally been there for my own child and this is not okay. All she has known is Endometriosis and I don't want that to be what she remembers when I am gone. 

So I thank everyone who has made a difference in my journey, who has educated me, who has been there for me in the late/early hours when I wanted to give up and end it all. You all have helped make me into the person I am right now and I will take all this with me as I move onto the next chapter of my life...

Head in the clouds for the last 9 years

I feel compelled to speak about what I have been going through the last two years. Although many know I love my red wine almost no one knew my addiction to Oxycodone.

Since my first Endo surgery in 2007 I have lived on many different medications. I don't even remember what it is like to not be on any.

Chronic pain has plagued me since I was 10 years old along with severe TMJ, depression, anxiety and PTSD that followed.

I have been a guinea pig to doctors because they could not help me. Instead of them being open and honest with me, they shamed me and made me feel like my pain was not real and that just led to me to a darker place every time I had a doctors appointment.

To fast forward to how I got addicted to alcohol and opiates is not quite simple to explain. The wine came first that I know. At first it was a glass now and then, then I would drink a glass or two when I got home in order to cope being a single parent in pain. It then turned into a couple of bottles a week, then to a box of wine that would last less than a week. My desire to come home and have a glass was strong because it made me relax, escape as well as not focus on the pain I was in daily. Besides smoking wine has been my most difficult crutch to get rid of.

I suffer from Major depression so I am either low or suicidal low no matter what medication I am on it just doesn't seem to help and that is where the wine would come in to play more because I was just trying to cope with everything happening to me as well as around me.

In February 2014 I lost my job of 10 yrs which ripped me to pieces mentally. In May I had my radical hysterectomy which led to me being on a cathedar for 11 days because I could not urinate. In June the prozac I was taking for depression and anxiety sent me down a dark spiral turn to suicidal thoughts and I was so close on acting on it because I was having visions of slitting my wrists and cutting my entire body with a razor. I was taken off Prozac and was given Serequel to bring me down from the panicked state I was in which helped. Then August just 3 months after major surgery I woke up to excruciating pain down both of my arms. I had edema in both limbs and I could not bend my fingers or elbows and it lasted for 3 months.. I would take Oxycodone for my jaw in the winter when it got really bad but for the most part the drug itself made me more sick then it did help me. However when I lost feeling in my arms and the pain was so intense I was on 2-4 pills a day just to get through the day. I started a new job at the end of September while barely being able to even hold a pen. In October I separated from my then husband and was a single mother once again and in the state I was in, I really felt I was not fit to have my daughter but I was alone and suffering.

That my friends was only 2014....

In 2015 I had no other choice then to sell my town house that I loved and worked so hard for. I just could not afford to live there. I had some amazing friends that did come over and help me paint some rooms in order to list it. It sold quick and I moved into my new condo in May in which my mother had to co-sign for because I could not afford to even get an apartment for the salary I was making even though I put a lot of money down. It was humiliating and it made me feel just more and more inadequate as a human. I was given a anti anxiety med since my constant panic mode would not cease but I didn't feel like it was doing anything. For around 6 months I was switching back and forth with that med, the oxy and wine along with my sleeping pills and muscle relaxer for my jaw. I had multiple oxy black outs but at the time I didn't realize that was what they were called. I just could not cope at all and needed to have a breakdown but that just could not happen because I financially could not do it. I don't even remember most of last year because suicide was on my mind for most of it. In May I started to also develop burning mouth syndrome which I continue to have a problem with still and I really don't know if it is the wine, oxy, cymbalta or menopause that has caused it. Sept 1st I was awaken out of my sleep by my neighbour telling me that my balcony was on fire. The HVAC unit overheated and destroyed all the stuff on my balcony as well as my HVAC unit. It took up until recently for them to even repair the basic things so my head was spinning fighting back and forth with the condo corporation. From October to December I really started to get into meditation and really focusing on just positive vibes, leaving those that complained all the time, or asked too much of me blocked and out of my life. I also started EMDR therapy to deal with the PTSD and to learn better coping mechanisms. Well that totally made things worse even though I started to see things differently so the abuse of oxy and wine just continued to happen.

That was 2015...

Here I am now in 2016 determined to cope in healthy ways and stay clear of any medication. My goal is to come down to 30mg of the cymbalta by end of March and off it completely by June. I know this is going to be so much harder to do because I have come off it years ago and it takes a good 2 weeks to come out of your body and I worked through it the last time, this time no way. My next goal will to be to come off the flexeril about a month after coming off cymbalta. The reason for that is the cymbalta has made me increase the flexeril because it causes me to clench and grind so much so it has been helpful and is not addictive to me. The last thing I come off of will be the sleeping pill I have been on for 3 yrs. That will be a tough one and I am in no hurry to come off it has I have suffered from insomnia since I was 15 and it wasn't until 3 years ago that I finally knew what it felt like to actually sleep a full 8 hours not just an hour or two.

2016 for me is a year for growth spiritually and I know it is going to be a hard year but I believe that I have the strength to get through it considering all that I have been through. I have not yet had a bone scan so that will be what I plan to do as well as I have not taken any HRT since my hysterectomy and I don't plan to.

I share this information out there because I know there are many going through this same type of medication cycle and it is hard to see a light at the end of the tunnel, but I am here to tell you that you can and I believe in you and I know it is hard. I still struggle so much but when I look down at my wrist I remember always that this is not the end of my story. This is not how my life will end.

How long does surgical menopause last?

I haven't written in a long time and it is mostly because I have no idea what is happening to me. I just don't feel normal and I am not sure why. Yes I still have hot flashes but the Cymbalta definitely helps to lessen them as well as helps my bladder spasms. 

Here is the thing.. My nose, ears and mouth are completely dried up. My eyes perfectly fine and many tests that I have had came back negative for ANA/RA so no Sjogren’s syndrome, so I am completely confused and living in utter hell at the moment I would say. My inner ears are so itchy and sometimes its white and flaky which has never happened before. The other day I did notice almost a red ting to the ear wax. My mouth on the other hand, wow it just never ending thirst. I drink at least 4 liters of water a day and I just can't quench my thirst. I started to develop "Burning mouth syndrome" which I thought was from upping the Cymbalta but now I don't know what it is from. My nose has been dry the longest. It started when I was on the continuous BCP 2008 and it has never gone away. I have tried so many things and at one point I was told it was a tiny cyst and that was removed and now its the other nostril but it just seems dry and my nose NEVER runs even if I have cold.  

I have yet to take HRT because everything else is fine, I think. I am 38 and my hysterectomy was May 2014 so that is coming up to 2 yrs. I am utterly confused about this subject. I know that I am young and that I already have mild osteo in my jaw but am I setting myself up for more problems if I take it? My worry is heart disease mostly because it runs in my family and I have been having a lot of heart issues with anxiety which I truly think was brought on in 2007 when I was put on Lupron. I didn't think of it until now and it scares me to go on anything else which could increase my risk.

Seriously though, when does this end... When?  

If anyone has any suggestions or is going through the same thing I would be more than happy to hear from you :)

Depression, Panic, Suicidal thoughts and Anxiety

Well its been 8 weeks already since my surgery but I have not been mentally prepared to write a blog post to update or take in what happened.  I can't believe that it has taken me this long. I feel all over the place and I am not sure if it is from the hysterectomy, the meds or just in general not having a job but I am in constant panic mode with extreme anxiety. 

Last week I ended up taking myself to the hospital because I was having so many thoughts of slitting my wrists. I have had suicidal thoughts in the past but nothing like this. I wanted to cut my entire body and kept contemplating on where and when. I had enough and I needed to find out some answers. 

Before going in to have the hysterectomy I already suffered from Complex PTSD, Major Depression and anxiety so I expected for some of this to happen since I am already prone to the mental aspect but to this degree I didn't. 

Every time I went to my doctors to tell her it was getting worse she would just up the prozac and I am pretty sure the suicidal thoughts were from that rather than the hormones. So at the hospital the on call Dr. gave me Seroquel and told me to lower the prozac to 20mg and I have and thank God the panic has gone since taking it. I don't even have to take it if I am not having one and so that is good. I used it the first week then barely any time since. Has anyone had this reaction to Prozac before?

People sometimes will never understand the pain and suffering Chronic pain people go through and its more the mental aspect for me than the pain. I have been sick for almost 25 yrs and that on its own is depressing. Every day I wake up and I am the same, no quote on earth could make me believe that things will get better but I have no choice but to make myself believe it and to get busy living.

My heart goes out to every spoonie going through so much, we certainly are a strong band of brothers and sisters. 

Mentally going out of my mind. #retailtherapy #vacation

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

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

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

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

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

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

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.

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.

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)
Hyperalgesia
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

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? 

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?