Endometriosis and me

So this is the first time I have blogged in a very long time. I just find it difficult to say what I need to say and have it out there for strangers to see but this is a little bit of my story. My experience with a horrible incurable disease called endometriosis.

What got me started on this tonight, was an article I read linked below about things you should never say or talk about to someone like me. Just 1 person out of 176 million  women and teens who suffer from this invisible disease. And I’m sorry if im brash with things I write or a bit too TMI, but this is the naked truth and reality of my world right now.

I can’t even begin to think of how many times I have wished that someone would understand the kind of pain that I went through and still do go through while suffering from this horrible disease. I can’t even begin to say how many times friends and family said it’s either all in my head or that it’s normal to be bed ridden for days during your period and even before or after it!

I pretty much felt alone in dealing with this sort of thing since puberty until I met one of my friends wife’s few years back. And to be honest, I still kind of do. Back in June of 2014, I had a hysterectomy and excision surgery done to finally be done with what has ruled my life for years and I still feel trapped by it some days.

Why you ask? Well, it’s simple really. It never goes away completely. It always returns. Before the hysterectomy, I had 2 surgeries done within 6 months of each other. The first was an exploratory surgery to try to find out why I was in so much pain for days even weeks at a time. During this surgery, it was discovered and diagnosed that I have endometriosis. The surgeon tried to remove as much of it as he could but left some behind because he was afraid of causing irreversible damage to my colon. Yes, you saw right. My colon. My uterus and colon as well as the cul-de-sac were fused together by this horrible disease. The second surgery, he did the same thing. Only when I had the hysterectomy did my surgeon have a general surgeon with him in case they had to cut out a part of my colon in order to remove the uterus. And thinking back now, with the mild and inexplicable pain I’ve been having in my abdomen again, it makes me think that he did not get all of it.

This…. Makes me angry, confused, sad, and worst of all, defeated. It is the worst feeling in the world to have the endometriosis come back after giving up the ability to have my own biological kids. Something that I had someday wished I could do. I tricked myself into thinking that I wouldn’t want to have my own kids before my now husband and I were even a thing. I tricked myself by saying there are so many children in the world here in the US, in Canada, everywhere that if I changed my mind in wanting children, that I would be ok with adopting. Of course, now it is my only option. OUR only option. I robbed us of that. The guilt is unimaginable that I will never be able to carry our children in my womb that is no longer there. I will never be able to give our parents, biological grand children.

I know they don’t care if it’s ours by blood or not but it’s still something that I have to live with everyday.

Recently, I found an online community of other women who suffer through the same experiences I have and going through the psychological warfare this disease puts you through. Although I am glad I have found it, I still find it difficult to interact with people about it after suffering through all of this on my own. I may not be alone in it, but some days, most days, I still feel it.

~Nikki G.

http://www.thenutritionista.ca/5-things-never-to-say-to-endo-patients/