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. 

What are my options after Endometriosis surgery when the pain returns?

A question came up on in one of the Facebook Endometriosis support groups that triggered me to write this post. The conversation was about patients trying to go to the US to have surgery as Canada is very limited when it comes to Endometriosis specialist and in fact there are many provinces that literally have none. What is a patient to do when there is no care? Why are there more and more Endometriosis sufferers in general continuing to have surgery after surgery? 

I have found that all over the internet people are having their 10th, 20th surgery like it is nothing to be worried about. It completely baffles me. I am not sure if people feel pressured to get more and more surgeries or that when they have pain they feel it is Endometriosis returning but unfortunately the problem with this disease is that it can't be seen. 

The biggest problem all around the world is after care. Once your surgery is done where are you supposed to go and what are the next steps? Is the pain you are feeling really Endometriosis or could it be something else? 

I myself have been in this situation and I myself have not followed through in doing the things that I needed to after surgery. Yes it is extremely possible for Endo to grow back if it was not removed properly however the pain we sometimes feel after a good surgery could be a variety of things and many women are having surgeries when they are not needed, only to cause more and more problems for them down the road. 

So, that being said what are the next steps? 

1) The very first thing with Endo that every woman should be aware of is that the first surgery matters a lot so make sure it counts. That means having surgery with an Endo specialist period. No OBGYN or someone claiming to be versed in Endo that is not good enough. You need someone who specializes in the disease and I know for some this is completely and utterly impossible and I will get to that in another post. 

2) Rest. Once your surgery is completed do not try to rush yourself or try to pick up heavy items etc. Just because you feel good on the outside does not mean the inside is healed yet and you are putting yourself at risk of damage inside. Take it slow and let your body heal. Try meditating during this time and let the natural course of healing take place. 

I am not an expert on the Pelvic Floor Therapy (PT) but I know it works for many people. That being said going to PT once a week or once a month does nothing when it comes to scar tissue. You need to find a place like Clear Passage. I know it is around $5000 a week but you are worked on for hours and its everyday. Your body has to remember the change in order for it to work so going daily is what will help but lets face it, how many people can afford that? I know I can't but it is something that I will be doing in the near future plus I would have to add in travel to the US as it is not provided here in Canada as of yet. What is your health worth? To me saving $5000 for Clear Passage is worth it for many reasons. It is good for women who have infertility problems, surgical adhesions, Bowel obstructions etc. I have heard great results from a fellow Canadian and Endo patient (See here and here) I think if you are interested in alternative options you really need to read everything they have on their site and even contact a consultant which is free of charge. 

                           

PT from Clear Passage is not only on the outside they also do internal and from what I hear very gentle and caring during the process. 

Here are some statistics regarding adhesion formation after surgery. A lot of the time what we are feeling is not Endo but adhesions. 

Below is a visual of what adhesions do to cause pain

I was able to speak with Dr. Wurn personally in 2009 at an Endometriosis symposium in Toronto and he was so helpful and caring about what I was taking about and to this day I truly believe that this is a vital part of recovery when it comes to Endometriosis and Adhesions.