Best Endometriosis Blog 2016

Friday, November 28, 2014

#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?