It's been a while

 I just joined Bluesky as I was banned from twitter due to the toxic nature of that platform. It used to be a place where people with Endo joined together and could talk about our own journeys and help each other find surgeons and just give support and advice. It was a movement like no other and that is how the first Worldwide Endometriosis march happened. Leave the toxic behind and come back to the peace we once knew. 

https://bsky.app/profile/endendoforever.bsky.social

Parametrial Endometriosis Surgery & Sacral Nerve Entrapment

Photo Credit  IFEM Endo

I can't believe it has been so long since I last posted. I always feel like they are going to take down my blog due to inactivity but they haven't. 

I am a little late posting about my surgery October 2019 for Parametrial Endometriosis & Sacral Nerve Entrapment. I have to say this was a very painful surgery with so many complications that are still affecting me today. I am not sure what I was expecting exactly but not at all what ended up happening. 

Before my surgery during pre-op I had told the anesthesiologist that I have a high pain tolerance and I need stronger meds than what are usually given. In fact I have said this before every surgery and it never happens and it happened once again. Upon awakening I was in severe pain and I am asking about my friend who came with me and I was told she left. I was really confused as to why she would do as well as taking my cell phone with her. I started to panic because I was alone and asked for the phone and had to ask for my emergency contact telephone number because as all of you know we don't really remember phone numbers anymore. I end up getting ahold of her and she said that they were closing down the waiting room and it still showed me in surgery on the screen. She was nervous about going to the underground parking so she left. I was pretty annoyed but whatever. She told me she did talk to the resident because she was asking what was going on and why it was taking longer than the time allotted. My surgery was already delayed by 2 hours due to complications with the patient prior. The surgery was supposed to be 3 hrs max but ended up being 6. She told me that they found a huge endometrioma on my bladder and that they nicked my ureter and had to wait an hour for a urologist to come in to tell them to stitch it or put a stent in. This is really weird due to the fact that the surgeon is a Urogynaecologist . There were so many question and I didn't get answers until the next day. I told the nurse that I was in severe pain. I have a drain bag and a catheter filled with blood and considering the surgery was so extensive they just told me they don't give opiods. These doctors don't seem to understand that opiods are important when it comes to healing from surgery and that is something they should know. 

I started writing this in 2019 and I will just pick up where I left off in another post. 

Parametrial endometriosis

Laparoscopic anatomy of the autonomic nerves of the pelvis and the concept of nerve sparing-Dr. Lemos

I finally got in to see a new Endometriosis specialist who deals with the nerves and bladder. Technically he is a urogynecologist but he knows his stuff. 

I had the initial consultation with his intern which is normal and I am happy to help teach and then he came in and told me that he is almost positive that I have Parametrial Endometriosis (LPE is a condition that reflects a more severe manifestation of endometriosis, requiring more aggressive surgery.)and is sending me for an MRI scan which I have never had for Endo considering how deep I have it, a urodynamic and cystoscopy and I am to take a rectal suppository that has a muscle relaxant (Baclofen-muscle relaxant and anti-spastic agent) It possibly works by decreasing excitatory neurotransmitter release) in it and gabapentin for the nerves. Right away I am floored because I have always asked how deep is too deep to go when dealing with endo but no one has ever been able to answer that until that day. I will need to have another surgery but I know I am in good hands. He even asked if I wanted to hold his hand while the intern examined me and told me about the surgery he is going to do (Video above) and for me to watch it. I am not sure what the PSN has to do with the issues I have no but I overheard the doctor mention something about it to his intern. It makes me wonder now what it was that he was talking about. Did the nerve grow back? Did cutting the nerve cause more damage?  

For anyone new reading this I had my first surgery in 2007 and it lasted five hours. During my surgery he also did a PSN where they sever the nerve from your uterus to the spine to stop the pain signal from coming. I was diagnosed with stage IV (DIE). He was confident he got it all and since he was a so called "Endometriosis specialist" in my city/country I believed him. I started developing pain again in my bladder and bowels three years later and he refused to help me because he said it was too complex but sent me to a baby doctor. That is what I like to call a regular gyno with very limited experience with endometriosis. In 2013 after a year long stint of medications that did not work she did surgery in which she said she couldn't get it all and called it superficial endo. Fast forward to 2014 after I wrote my original surgeon a letter he had me in his office and we discussed a radical hysterectomy. For the most part it was me pushing, he really did not want to do it but I could not go through another two decades of this run around. I knew I was going to have bowel and bladder issues for some reason after and even going in he had me believing there was nothing there and it was all in my head. Well it wasn't, it was just as deep as my first surgery including recurrence of recto vaginal endo which  he removed a large portion of my vagina to remove along with my pelvic lining in order to remove my ureters and ovary that was in bedded into my pelvic wall with dense adhesion's. Going into surgical menopause was a complete nightmare and I was refused any sort of HRT by my family doctor so I rode it out and it took four years to make me feel like myself again and even now I am not 100% right. 

The last four years I started to lose cognitive function, my reaction time is slower, and I started to get sharp pains in my urethra and vaginal area anytime my bowels moved around. I also am severely constipated which can happen after a PSN and from any of the medications that I have been put on. I have left SI joint dysfunction and hip pain along with nerve and muscle pain from pelvic floor spasms. I don't have the normal endo pain anymore this is something so different which sucks just as bad. 

I have yet to get the compound suppositories but I am supposed to take those 2-3 times a day and not stop even if I feel better.  So that is where I am at right now with this disease. I didn't think that I would be back in this situation again but it is happening and I am just happy that I have an amazing surgeon that listened to me and didn't make me feel like I was making this pain up. I am lucky to have found this doctor. 

Has anyone else had this surgery before? I could use a little more information on the outcome of your surgery. 

My body is drying out

I am not even sure where to start when it comes to my body drying out. I want to say it started long before my first surgery for Endometriosis in 2007. I have never really told this to anyone before but I am about to and I feel really weird about it.

My vaginal area has always been dry and I mean really dry to the point that even my clitoris was dry. It would be painful to even walk when it was flaring up. I remember seeing a gynecologist about it and they told me they couldn't find anything wrong. This pain lasted almost 10 yrs then suddenly disappeared. Having sex would be so painful because of how dry I was especially if the person I was with would try to stimulate my clitoris.  Sometimes I would grin and bare it and I mean even doing that was horrifically painful but how could they understand this pain? I never told anyone because it was shameful to me and also because even when I was diagnosed with Endometriosis I didn't hear one person talk about this so I assumed it was a problem that not many other people had. Usually this pain with be more severe with my periods and I chalked it up to it being from me wearing tampons and it drying me out everywhere else. I would just use Vaseline and that would help.

About a month after my hysterectomy I started to develop this really weird feeling in my mouth. It was as if I had burned my tongue on something and it felt burnt all day long. The only way to make the pain subside would be to eat or sleep. I am now 4 years post hyster and the pain and dryness I have is just unbelievable. I can only equate it to my hyster or jaw because I have TMJ as well but no one can give me answers so I have to assume it is from my surgery.

The burning that I feel has a name and its called "burning mouth syndrome" it is brought on by trauma, post menopause and various other things and when I brought this up to my doctor she said that had nothing to do with my hysterectomy when it clearly states that it is possible. That is the reason I left that doctor. I have had so many issues over the last two years and she did nothing but make it worse for me. I had a complete mental breakdown and she said to me "what would make you feel you had a nervous breakdown" I was like "did you not see me in here almost once a week for 5 months straight out of my mind crying and not able to handle anything in severe crisis?" So needless to say I am confident I am in the right hands now.

The burning mouth has been here for a while and around the end of 2017 as well as the chronic canker sores and the mouth dryness came on full force. I thought it might have been the meds I was on that time or because they all cause dry mouth especially the Wellbutrin. I was using Biotene mouth wash, saliva inducing gum but it progressively just kept getting worse. At one point I thought maybe it had something to do with my jaw because I was getting nerve blocks put in my jaw as well as Botox and in February of this year had jaw surgery so I chalked it up to that causing it.

When I get the cankers they come with about 5 at a time or more and they clear then a new one comes in its place. It is so painful at times I can't even eat. Right now I can't drink coffee or anything that is acidic like wine, juice, and.....my favorite... tomatoes..  I don't know if what I am experiencing is food allergy related, jaw or menopause but I am frightened that I am going to get mouth cancer and whenever I go to the dentist I explain the situation but it always seems to get dismissed. I have all the signs for that unless I have Behchets disease which I do have a lot of symptoms. I hate that I have to research my symptoms online to get answers but seriously its like no one listens to me ever or I have so many issues they don't know where to start.

So for now I brush with special toothpaste and brush, mouthwash, candies that help create saliva, I swish my mouth with anbesol and dab on the Alum which was a solution for some online.

I should say that my doctor did notice that my last two blood tests came back with elevated IgM so she is sending me to an Immunologist which I am so thankful for. Maybe he can give me answers.

So for now I will just continue down this painful road and cross my fingers that someone can stop the pain.

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

The Faces of Endo Book is in the works, do you want to take part?

As you know the last four years has been rough to say the least and I have had creative blocks for a while especially with the second video "The voices of Endo". I decided this morning that if I don't do the book I will not be able to move on to the next chapter in my life so that is exactly what I am doing.

Would you like to take part in this? If so please go to my Facebook page here and DM me your email address.  I will be sending out an email in May to everyone that has asked to take part with all the information and consent form.

This is going to be an amazing book because there are so many strong courageous women out there that want their voice to be heard.
   

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. 

My final salute to my amazing Endowarriors

The time has come for me to bid farewell to the Endo community. I never thought that I would even get to this point but I have. There are mixed emotions but mostly relief. I am tired of advocating, tired of supporting other, tired of talking about a disease that helped destroy almost my entire life. 

I have met some really amazing Endosisters online which I still plan to keep in touch with but will no longer be on social media relating to Endo. 

I have hit a point in my life that Endo is now at the bottom of the chain when it comes to quality of life and I have other things I need to deal with. I have been suffering greatly for the last 3 yrs mentally, physically and emotionally and I can no longer be there for others or to educate them or to even talk about Endo. 

I hope that I left a mark in this Endo world and that I helped some people along their journey's as that that was the only thing that I wanted to accomplish. "That no women was to ever fight this disease alone" 

My last post on my Faces of Endo Facebook page is below. I thought I would post it because I will be closing it down within 6 months. This blog I just might leave open. I worked really hard on it and I hope that others can benefit from what I have been through. 

FACEBOOK FINAL POST 

It is with deep regret that I must tell you all that I will no longer be advocating for endometriosis. It has been a long battle for me starting at the age of 13 and continuously advocating night and day for the last 5 yrs.

I suffer from complex PTSD and Major Depression with anxiety, TMJ and Fibromyalgia as well and things have taken a turn for the worse and I am just not getting any better.

I have taken all my energy to help and educate women all over social media worldwide so that the next generation does not suffer the way we have.

It is long overdue that I take care of myself and pass the torch to my fellow endosisters to continue to raise awareness even when it seems there is no change happening. Keep fighting! 

I thank each and every one of you that have helped me throughout the years to make these projects happen and the friendships that I have made.

I am forever indebted to the women that heard my silence and knew I was not okay, messaging me daily/weekly to check in on me constantly to see if they could help me through the dark times. I owe you so much because of you I never took my life when all I wanted to do was leave this earth. Your friendships will never be forgotten.

I will eventually close this page in the next 6 months as well as my Instagram account, twitter and pinterest.

The next steps for me is dealing with the CPTSD that has taken over my entire life and I hope you all respect my decision.

Thank you.

Mesa Legend Community College "Faces of Endo" article

Thank you Nikki Waldmann for running an article on the Faces of Endo.

See link to article here 

The Faces of Endo 2016 Part 2

The Faces of Endo 2016 Part 1

I have almost made it through 2016

I am not sure how I made it through most of this year but I did and these are some amazing things that happened and awesome people that are in my world. 

The Faces of Endo is back!!

It has been 2 yrs since I started #Thefacesofendo and I struggled to find new ideas of what I should do next to raise awareness. I suddenly realized that this is what people want. People want to know that they are not alone and that their voices are being heard. 

This brings us to the updated #Facesofendo 2016 in which a new video will follow in November. 

Please come see some of the new faces for 2016 HERE

My light was meant to shine

For as long as I can remember I have suffered a lot of trauma and not just with Endometriosis. It took decades for me to find my voice and during that entire time I had so much resistance from others around me. When I would talk people about Endometriosis or Fibromyalgia to people (including family and friends) they would either look in a different direction or changed the subject on me, and sometimes in mid sentence. They would feel so uncomfortable with me talking about it that it made me feel like there was something wrong with me and that I was alone in a dark place all by myself left to tackle these diseases in silence. 

 Then there were others that used my voice to their advantage to better themselves and take the credit for the hard work that I had accomplished. 

Let's just say that for the last 6 months I shut down completely because I truly felt that I did not have any support whatsoever... Well that is not exactly the truth. I have had some really true genuine friends that have battled along side me through thick and thin and I am forever indebted to them. 

I think it hurts a lot because the people that did this to me were family and close friends I have known a good portion of my life. I have one friend in particular who I have felt distant from and it is only getting worse. It is almost like the friendship is not there anymore and maybe it isn't. Maybe I know that I need to move on from these people that could care less about my physical and mental well being. 

I stopped all my advocacy work because I lost my voice again due to compromising my own heart and soul to make others feel comfortable. I allowed this. I don't even know how because I never thought that there would have been a day that I stopped spreading awareness about Endometriosis. It is in my blood and this is my purpose in life, this IS what I am called to do. 

 I have learned a lot in 2 yrs and what I know is that I am a light to others and a voice to those who are silenced just the way I was. I can't let those people down. I know my purpose is to help them and if any of you see my light dim, please talk to me and remind me why I do this. 

2 Years Post Radical Hysterectomy

The last two years I can honestly say have been insane

I always thought that because I never really had huge side effects from Lupron like crazy hot flashes and joint pain things would have been different for me after my surgery. Even for the first month I felt like I had be saved from all that mess. I soon realized that was not the case and that I really feel that I literally went to hell and back. (This is not at all an exaggeration)

The best way for me to describe surgical menopause without any form of  HRT is like continuous torture of the mind, body and soul and losing hope that things will always and forever remain the way it is. I felt that things were at a stand still yet I felt at the same time things were going on continuously in fast forward speed. Every half hour I was completely taken over by hot flashes and I watched what I ate and drank in order to try to stop them but that really didn't make a difference. I felt like I wanted to scratch peoples faces off just for talking to me in a way that I took offence to. My body morphed into something similar to the Pillsbury dough boy with dark loose bags under each eye. There were days that I would look in the mirror and be in utter tears because I felt that I looked so much different.. ugly. fat and my self esteem took a huge nose dive. I could barely pull myself out of bed each morning, I stopped cooking, I stopped cleaning, and I stopped taking care of myself. I was just existing/surviving and not living. I will admit there were times I just wanted to end it all because I did not see this torture ending any time soon if ever....

I am still not sure how it happened but one day I just woke up and I didn't feel the same way physically and mentally. My mind was clear, the hot flashes were gone, and I felt happy for the first time in a long time. I would say the only thing that has not improved symptom wise is the overwhelming feeling of being tired and not having energy for anything....and bladder leakage ugh!

That being said I can look back now to where I came from at 13 yrs old and see where I am today with this disease and I can finally say that I am on the road to living... not existing but actually living. The quote  "You've seen my decent, now watch my rising" is truly perfect for me right now and where I am with my journey.

My mantra is "Still I rise" and I do just that.

Healing doesn't mean the damage never existed

Photo credit :Warriorgoddesstraining

I promised myself and others that I would continue my blog even though I no longer advocate at the level I once did. I can tell you right now, that in itself has been a huge eye opener and a spiritual awakening. 

I allowed myself to be controlled by a disease(s) for over 25 yrs and consumed myself in literature, research all just to prove that something was wrong and it took so much of my life away. 

I didn't enjoy anything about life whatsoever, not even people. I wanted everyone to stay away from me and stop talking because I was so angry at my situation and in pain that it was all that I could focus on. I pushed so many people away because I felt they didn't understand and really how could they? 

December 24th 2013 I started to take back my life.  So looking back at it now I feel that this was Step 1. I felt enough was enough and so I wrote my surgeon this letter and mailed it out. (See the link here) it wasn't long before I got an answer and was in his office. 

Step 2 was May 9th 2014 in which I had a radical hysterectomy done along with excision surgery (See the link here)

Step 3 was happening between 2014-2015. It was a long horrible point in my life and going through a hysterectomy with no HRT is bound to make it that more eventful. I lost my job of 10 yrs, had major surgery, lost feeling in my arms for 3 months, started a new job, separated from my husband, sold my house, bought a condo, and had a fire in my condo all within this time frame... Bad luck people might say but I was meant to go through all of this in order for me to let go and move on. By the end of 2015 I knew it was time to get help for what was mentally plaguing me (Complex PTSD). I wanted to be free from anything that was making me feel negative or think about my past. For me triggers have always been there and I constantly lived in the past. I tried so many different types of therapies but I knew that there had to be someone out there to help me. My sister suggested EMDR therapy.

Step 4 took me to my first email to this therapist. I searched online for one close to me and since I have actively wanted to get help and not just say I wanted it, I let the spirits guide me to this person. One stood out so I took that as a sign. I emailed her my story and told her that I didn't want to waste time discovering who I was and just get to the point of what I need help with and why and go from there. At first I thought she was going to think I was a nut job but she responded back fast and was comforting and inviting. I saw her for about 15 weeks straight and during this time my meditation increased and my focus ultimately was to relive and let go of all the pain and suffering. It was all very overwhelming and during this time I was drinking a lot and taking Oxycodone just to numb everything that was going on. I told her that I wanted to take a break over Christmas because I had so much stuff to get done and I needed a break. I never did go back to her because during that time I had a good couple of months to process everything that had happened in my life and that moves us to the next step. 

Step 5 started at the beginning of this year. I was feeling lost, confused, underpaid and just not wanting to live. Well I wanted to live but not the way I had been. This is when I wrote this post here (See link to post) I knew it was time to make the change with my medications, my drinking habits and the fact that I had wasted 25 yrs sick, looking for a cure, looking for someone to listen to me and trying to figure out why the hell I was dealt this deck of cards. I was making myself sick just thinking about it. I mean literally. I didn't want to talk about anything that related to illness, I just wanted to move on and live the next years of my life (however long that may be) not feeling sorry for myself and actually stop letting all of this control me. So I took charge. 

Step 6 I had made great progress (See link to post) I didn't think that I would make it to this point. I was determined and goal focused to come off all the medications I was on and currently only have a sleeping pill which I am working on coming off with my doctors help. This will be the hardest challenge to date for everything because I have been on it for 4 yrs and it has saved my life. I went over a decade only getting an hour sleep per night and which possibly started this whole cycle of pain (which was diagnosed as Fibromyalgia in 1997) For the last 5 years my endless nights of worrying stopped and I feel even without the sleeping pills they have stopped so I know it is time to figure out how to make myself tired on my own instead of taking a pill. 

Step 7 I am going through as I write this post. I am back to reading, meditating, eating a lot healthier and have goals in mind. I am looking to finish off my Endometriosis Biography (which couldn't have happened if I wasn't at this step) that I started 3 yrs ago, I plan on starting off with just stretching and simple palates and yoga and hopefully be down to a more reasonable weight by the end of the year. I am not thinking any further than that because I know baby steps are the only way I will make it there and from past experience. I feel free mentally. I am not depressed anymore, I have no anxiety, I feel hope, I am so mentally strong at this point and I know I am never looking back. I am looking for jobs that would suit my personality and lifestyle rather than the stressful jobs with no purpose like I have always done and I am staying single. I love being single it is so empowering and peaceful. I haven't ruled out love in all of that but it just isn't what I am looking for and if I am meant to find it I will.

The key for me in all of this was that I started to cut toxic people out of my life, I stopped looking at negative posts and would only focus on positive inspiring things. I would always see people say that they hated people who posted things like that because it was just a cry for help or something like that but it was the complete opposite for me. I was retraining my brain to focus on positive things and people and it took a long time for my brain to be able to digests all because naturally I had a negative attitude and thought process for so long. It wasn't easy but I tricked my brain. I know that sounds messed up but I did. As soon as I sense a bad vibe/aura, posts or people are negative around me, right away my body changes. I know I can stop it, I have that control no matter what is going on around me. I had to change. I mentally had to see that there was more to life even if I am in pain. The less I focus on it the more I live in the now. I am present. I am here.



So that is all for now and thank you for all of those who inspired me without even knowing it during the last two years.

Endowhat Premiere Toronto

I have been anticipating this event for months and it finally came.

I remember being in middle/high school and always having to watch these sex education movies and thinking even at that time they were so out of date (literally made in the 70's). I felt so proud to be sitting there in the audience experiencing history being made.. just saying that is giving me chills as we speak. From the moment it started I was in tears. I was just so happy that after all this time finally we had something to use as a tool for education. 

The part I love about this movie and its purpose is below and what their plan is going to be. This is huge!! This means that finally people will get the most up to date educational information since.....  the "Sampson theory" (1920) So this is why I am so excited about it.

Shannon Cohn did an amazing job with this movie and gathered a lot of big players out there in the Endo world. I was so happy to see familiar faces on the screen because it made it real for me. 

My mother and sister came out and it was the first time they had ever come to an Endo event. Needless to say my blog has been my venting place as I didn't have support the last 25 yrs living with this disease. They finally got to see what have been living with and for the first time in my life I feel validation because I truly believe my mother had no idea that it was this bad and feels horrible for not being there all these years and me suffering alone. 

So Shannon thanks for making it a night I will never forget. 

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...

Mirror, Mirror on the wall who's the best Endo surgeon of them all?

I am sure the title of this post caught your attention and that was my intent. 

There has been a lot of friction in the Endometriosis community when it comes to surgeons and who is the best. There are people that I have started calling "Surgeon Groupies" who follow certain surgeons and feed off everything they say. They often trash other surgeons theories and capabilities on-line for all to see or they promote them like they were marketing more surgeries for them.  

Then we have surgeons who actually think they are the best or the Gods of Endometriosis and this certainly doesn't help patients at all it just makes ones newly diagnosed confused on who and what to believe. 

This has become so frustrating being a person that talks/supports a lot of Endo patients around the world because the fact remains that every surgeon is human. Surgeons make mistakes, surgeons have victories, surgeons have feelings, surgeons have gone to school for years in order to do something they love doing, and some also have huge egos. We as patients forget this sometimes and it really doesn't help our cause. 

So how do we as patients know what to believe? Well that is a tough question to answer and I can only speak from what I have learned reading on-line, talking to other patient advocates and surgeons and from my own common sense. 

There is no cure for Endometriosis. Period. If there was we would also know why some women get Endometriosis and why some don't, and why some get it so severe and some that don't feel pain at all. With that being said there is no guarantee that with excision surgery you will be free from Endo. Yes, some will be pain free, some even never even think of Endo again, but then there will be others that just do not get relief and there are many reasons for that. 

I truly believe that you as a patient can't put all your faith in a surgeon to heal you from a disease that there is no cure for. Yes, you want the best one who has the skill and knows what to look for and be able to remove off multiple organs, but you also have to work on other areas of the body as well like doing pelvic floor therapy, meditation, maybe even psychotherapy to deal with the trauma of the disease, work on your diet, lifestyle as well as grieving for the life you once had before Endo took hold of it. There is a whole process that needs to be done and as exhausting as it is you really need to see the whole picture. Stand back and take it in and go forward. 

In closing I think we need to stop putting this huge expectation on these surgeons being miracle workers because this is a very complex disease and everyone of those surgeons may be good in their own way but not one of them is the best because if there was a "BEST" we would all be cured. 

If we want change, excellence centres and research done so that there can be a cure we need to stand together and stop bashing these doctors and band together. We need to attend awareness events, fundraisers and stop making excuses why you can't go. If you want change you need to be the change as well.