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

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. 

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.

Worse off having Endometriosis surgery in the first place?

Is this a thought that you have pondered some time since having surgery for Endometriosis? We always here that the "Gold Standard" is the best way to treat it but at what cost? What have you lost or what has changed since making that choice to have your first Endo surgery? This is something that I think about a lot. I suffered greatly long before the internet and I did have Stage IV (DIE) with Rectovaginal and bladder disease and I still question if I made the right choice after all this time.

For me I went to over 40+ doctors in a 14 yr time frame undergoing hundreds and hundreds of tests, appointments, exams etc. I suffered greatly in the hands the of the medical care system but how were they to know when they couldn't see anything. For me my first surgery was for answers. I couldn't handle another doctor saying to me that he didn't know and to go along and just try this anti-depressant this time....

Before surgery I was around 135-140 (Now 165) and I had chronic nausea for 2 yrs and couldn't go in the sun, reflux which made it hard to eat or drink anything along with migraines lasting over 100 hours which would end me up in the ER each time as nothing could help stop the pain and those started at 14. The rectal pain I would get wasn't just on my "Ladies days" it was at any given time and they would come out of no where. Days before my period I would evacuate my bowels which felt nice as I was always constipated and in pain because of it however that nice feeling didn't last long because as soon as the blood came so did the numbness, pain, vomiting and constipation again. It wasn't until the 7th day or so that I could have a bowel movement and then the pain would subside and same with the symptoms. The bladder issues I chalked up to child birth as it seemed to get worse when I was pregnant. I was diagnosed with Fibromyalgia at 17 yrs old and I always felt that I didn't have it and kept pursuing answers that would make sense.

Where would I be right now if I had done nothing and left it? I am pretty confused because I we are damned if we do and damned if we don't. We just end up with a different set of problems which some times end up worse than the original pain to begin with. If I am honest I can't even remember my endo pain anymore. I know it was brutal and I know that I suffered a lot but some days I wish I had that life back and some days I don't. It really is unfair.

What do you think? Do you think you should have just left it? Do you think it has made things worse? When will we be able to detect this disease before being opened up and also be able to manage the Endo without being cut open?

Menopause & Heart Disease

It is a well known fact that women who have surgical menopause are at a higher risk in developing heart disease. 

Almost everyone on my dad's side have/had heart disease so yes this is something that concerns me greatly because I used to smoke and only quit two months ago (still better than nothing for sure), I lost all feeling in my arms for 3 months and the testing was too late to say what caused it. I still don't feel right since that happened and I am fearing that it's signs of a stroke or heart attack. My upper body feels inflamed, that is the best way I can explain what it feels like. I have never felt this before so I am not sure if it is from surgical menopause or my arteries. It is a truly scary thing to go through. I never thought of this before my hysterectomy to be quiet honest. I understood it put me at greater risk for cardiovascular disease, early dementia and mental health issues but for some reason I didn't even think it would happen to me.

I can't say 100% at this moment if my hysterectomy was right for me because I really am unsure of what is going on but as an advocate and a warrior I will continue to update any changes to help others in the future. 

Has anyone felt what I am feeling at the moment?

6 Months Post Hysterectomy

I can honestly say that at the beginning of this year I felt helpless, in pain and hopeless. There was a part of me that just wanted to give up entirely. Endometriosis stole a good portion of my life. I suffered in the hands of the medical system. What makes my journey different, is that in Feb of this year I stood up and said "enough is enough, you're going to listen to me if you like it or not and no I am not taking any more medication!"

I know that a hysterectomy does not cure Endo I say it enough to many people, but for me it was closure. I suffer from C-PTSD and I believe without a doubt a good portion of this is due to the lack of treatment and care for pain I was in for 14 yrs. I was dismissed so many times and made to feel like I was a mental case and if I could go on stage and stand in front of the 40+ doctors that shunned me and made me feel like I was exaggerating my pain I still don't think I would get the mental closure I need from the trauma I experienced.

That being said here I am now 6 months post up and when it comes to Endo and all its sides effects I am doing 100% better. I am not trying to brag about it nor do I know if in a years time I will be the same but at this moment I feel vindicated.

Since surgery in May I have not had too many side effects from surgical menopause. I have about 5 hot flashes a day but I notice I get them from drinking coffee, wine or sudden temperature changes. I have gained around 10 lbs and that is frustrating but at the end of the day who cares. One thing I have noticed is ageing. I look in the mirror and I don't know who I am any more. I feel like I have aged 10 yrs and again, who cares. This disease is relentless and if I can have pain free days from Endo then I can accept the changes that are physically happening due to hormone changes.

One of my big fears have been migraines. I was on the BCP for 8 yrs continuously and only had one migraine during that time and before I was on the BCP I had had them for over 10 yrs, going from Aura, to cluster then to complicated. So I can only assume mine were caused by hormone fluctuations but I am not sure if it was actually estrogen or progesterone as I react very poorly to progesterone.

Bladder changes have kind of stayed the same however I do leak. UGH. I had a lot of bladder and ureter work done so it is expected. My bowels have been touch and go. At first I didn't feel much change but I could totally see the difference now between uterine and bowel pain. Lately I get pretty bad bowel pain and I am constipated but that is nothing new and to be honest I really never expected that to change.

When it comes to my emotions I feel that my case itself is so complex that I can't really gage if its menopause or C-PTSD. I am all over the place. The other day was a bad day but I told myself that I needed to go to sleep and tomorrow would be a new day and it was. So I expect in a years time that maybe things will change in this department.

Overall I am happy with my hysterectomy and the choice I made. It took me 5 yrs and lots of research and even seconds from being put under I still had my doubts. I always sat on the fence. 50/50 were the odds pretty much after you do so much research. I didn't know what I would feel afterwards when it came to menopause and I think that scared me the most. Would it have been for nothing? Would I still suffer after if not more? The answer for me is that it was the best decision and I am extremely happy with the outcome.

I will continue to update because I think it is important to document the journey years after having a hysterectomy because everyone is different.

What are/were your biggest worries about having a hysterectomy? Why do you think it will help you?