8 Months Post Hysterectomy

As I start to approach the one year anniversary of my hysterectomy, I can say without a doubt this was quite the ride so far. I knew I was going to have rough times and I can't say that it has been crazy hard but I have had so many complications that I can't yet determine if what I have been going through is actually menopause or inflammation. I feel like my entire body is inflamed and on fire all the time. It is not like a hot flash either it is a steady burning type pain that lasts for hours if not days.

It all seems to have stemmed from me losing feeling in my arms in August 2014. My arms were swollen and I could not bend my fingers or elbows for an entire month. It was excruciating. At around the 3 month mark I finally got some of my feeling back and the pain was a lot less severe but not totally gone. It took 3 months for me to get a CT Angio, MRI and nerve testing done. The only thing that was done within a couple of days of onset was blood work to check for RA but no other inflammatory blood work was done. Over the years I have had multiple inflammatory elevated blood work but because nothing stood out and my ANA came back negative nothing further was being done. I have some sort of inflammatory disease this I know and I am sure of. It now is up to me to find a doctor to listen. My doctor was supposed to send me to a Rheumatologist since I haven't been to one in 20 years since being diagnosed at 17 with Fibromyalgia. That being said I am going to have to follow up today.

At this moment I am back on Cymbalta 30mg a day to help with the "Fibro" pain and anxiety/Panic. Funny enough it is helping with some of the inflammation and it has calmed down the nerves that are shooting off randomly all over my body so that is a plus. Brain fog however is at its worse. Is it the med or menopause I have no idea but it is not a good feeling. I could be driving and all of the sudden start to panic that I have no idea where I am. It is like I have never seen the street I am driving on which I have driven on for years. It is a scary feeling as I am not on any HRT and I always worry about early onset of dementia. I am just not comfortable going on one because I am not having side effects from the Hyster or surgical menopause which I find very alarming to be honest. I don't sweat at all and my nose is so dry. These are not new things but they seem to be worse now than before.

The one thing that hasn't changed is my bowels. I am more constipated than ever so I am continually trying to find out what makes it worse and obviously any drug I take makes it worse even if I am drinking 4 ltrs of water day and my diet is great. It will take time and patience to deal with this. The other issue is my bladder. I am thinking right now I have severe pelvic floor dysfunction and since taking Cymblata it has definitely calmed down the spasms I have been having. It has been hard for me to walk without feeling like my bladder is going to drop out. The pain and pressure I feel is only on the right hand side so not sure what is causing that. When I walk I feel like its really heavy and it makes me feel like I have to pee again. That started about 6 weeks ago but like I said got better the last week since being on Cymbalta for a month now.

I am over the hump of bad side effects of Cymbalta for the most part. So that I am glad about because it was a rough painful ride. I am also waiting to see if my drug plan covers this med and I will need to know soon as I only got samples for 3 months and if I don't have them it will be torture. This drug is very strong and coming off it like that is 2 weeks of the worst days of your life. So here is hoping it will go through.

Am I still happy I had the hysterectomy? Yes I really am. I am confused as to why I have not felt like I have been induced to menopause though. Why am I not having all the side effects that others are having? The arm pain for me isn't something new as 2 yrs ago I lost feeling in the left arm. The inflammation has always been there its just been worse since the hyster if anything. So is that all I get from this? Inflammation? Should I be expecting something more after a year is done or is this it?   

#Givingtuesday #unselfie #EFA

We should always give to charities in need and Endometriosis is one of them. Here is something the EFA is doing to raise money. 

"Did you know that on December 2nd, your $10 gift to the EFA will be transformed into a $40 donation because of pledges to match donations for#GivingTuesday? Thanks to our co-founders drseckin and Padma Lakshmi, and Board Member Jennifer Hieber, your support will go even further!#GivingTuesdayEFA."

Find out more about how you can donate and help the cause and share your #unselfie to raise awareness here http://www.endofound.org/news/484/Its-time-to-show-your-UNSelfie-for-the-EFA-and-GivingTuesday

#Endometriosis #Poem

The Devil within

I woke up one day and everything changed,

The life that I knew of was now so strange.

The pain was intense it brought me to my knees,

What was this pain that just wouldn't ease?

The doctor said it could be a cyst,

And the word Endometriosis came from her lips.

What was that? I just didn’t know,

Nor did my mother so we just let it go.

In fetal position on a cold hard floor,

Is where I laid pleading for the pain to be no more.

Months turned to years and tears turned to fear,

No one could answer why my pain was so severe.

It felt like a knife was jabbing me inside,

My rectum was suddenly the new pain that thrived.

IBS was what I was told but I did not believe,

Another diagnoses my mind could not conceive.

My mind was drifting into a hole I could not escape,

The further I got I was convinced this was my fate.

The trauma from the neglect and even the fighting

After 14 years death was inviting.  

Doctor after doctor there seemed to be no end,

The treatment I was asking for I had to defend.

No one believed me and I hung my head in shame,

Did they think that I wanted this or was playing a game?

I finally got to the place I needed to be

Within seconds he told me what others did not see.

Endometriosis was there on my bowels and my bladder,

Sadly it had destroyed all things that mattered.

Years had passed and the disease still kept growing,

My surgeon was good but it just wasn't showing.

I finally convinced him to do what was right

Remove all my insides and all Endo in sight.

I finally have closure from the terror and the pain,

But my mind from the trauma will never be the same.

I still see the darkness but not the same as before,

Because day by day I see the light more.

@EndEndoForever (The Faces of Endo)

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?