chronic pain · Endometriosis · lupus

I am my best medical advocate.

After a very disparaging conversation with my Rheumatologist this week I’ve come to the conclusion that no one wants to cure ME more than I do.  The medical industry wants me to be sick.  They do not profit if I get better so they are determined to make sure I remain that way.

I finally decided to contact the Center for Endometriosis Research & Treatment (CERT) in San Diego.  Which is 75 miles south of my Orange County home but I was so hopeful that they of all institutions would help me figure out my pain.  They simply informed me that since I no longer have my reproductive organs, there is nothing they can do for me since my condition is not longer considered Endometriosis but Adhesions.

My last surgery was on October 12, 2015.  My gynecologist assured me he was well educated in Endometriosis surgery and that he would cure me, his words.  Because according to him it was impossible for endometriosis to live without the estrogen my ovary was producing.  My surgery was 15 minutes.  He went in, took out a perfectly healthy ovary & fallopian tube. He did not bother to take the time & look around to see if there were any adhesions stuck on any other organs.  He actually had left before I woke up so he didn’t even talk to me that day.  He must have had an important golf game to get to.

Now I have been left with no reproductive organs, enormous debt from trying to rule out every other illness only to still be held prisoner by this devastatingly, life altering, excruciatingly painful disease.  I know it’s the endometrial adhesions that must be on my bowls or bladder that are causing me this pain.  I have dealt with this pain for over eight years, I know it.  They want to put me on antidepressants or give me trial medication like Lyrica just because they refuse to admit that they do not have the answers.  I would be so much better off without my last surgery, even though it did help the pain a little.  Because know I am left completely hopeless with no one willing to help me.

So my only hope, if I do not want to die before 40, is to figure out a way to cure myself.  Do whatever it takes to improve my quality of life which at the moment is nonexistent. I have to do it for myself, for my children, my husband and for other endo sisters who are suffering to show them that there is always hope, even when all we can see is darkness.

I really want to thank each and every one of you who have taken the time to read my blogs or leave a comment.  This week has been one of the darkest ones since my sisters death in 2011.  At one point I really did think I needed to go to a mental hospital. But admiringly readying another warriors post gave me the confidence and motivation to start this blog. And I am 100% honest when I say it has been remarkably therapeutic.

Much Love,

Erica D.

Advertisements

3 thoughts on “I am my best medical advocate.

  1. You might give digestive enzymes a try if you don’t already take them. My body doesn’t break stuff down without help anymore, and the enzymes did help significantly with pain. It’s definitely not gone, but it’s not near as debilitating as it was. I’m sure I still have probably adhesions if not a fistula, but enzymes keep stuff soft enough to move more gently.

    Liked by 1 person

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s