The Real Me

There is something I've been wanting to address for a while now but I guess it was never the right time.  For me, the time is now.  The images and words between/above/below the text feel very personal to me in this post.  I have realized that there is a glaring and important difference in people's perception of me as opposed to my actual experience while I was being diagnosed and up until my surgery and for a few months after.  The perception is I "dropped off the face of the earth," that I "wouldn't respond in a timely manner," that I didn't call back quickly or that I wasn't responding the way that others may have felt I should have responded.  I have a huge problem with all of those statements and I have a problem that nobody noticed...

Feeling Better, BUT...

My last post was telling you that I've made steps in a positive direction (yay!) which is HUGE over the past few months.  That post was all good news.  I don't have bad news to go with it, but I'm afraid too many people are going to read and think that everything is fine now.  In case I haven't said it already a thousand times, endometriosis is not curable.  I am going to have it.  Tomorrow, next year, at least until menopause... I'm going to have it.  With that comes decisions about hormones... which I am also going to be on until menopause to keep the endometriosis at bay.  And those hormones are not really supposed to be long term solutions.  They come with a long list of side effects!  Plus the supplements to help my body fight off the endometriosis that I guess my body wants to produce.

Interesting Article

Interesting article in the news today about an MIT bioengineer who is studying endometriosis and also has the disease:

http://www.boston.com/news/science/blogs/science-in-mind/2014/02/05/endometriosis/QPaGvDagBHnTjXQFqUZBTL/blog.html

and for a more economics-based view: 
http://www.sys-con.com/node/2954818

Clinical Trial

So in case anyone reading this has moderate-severe endometriosis like me, my sister came across a clinical trial for new medication related to endometriosis pain and other symptoms:  Violet Petal Study (www.VioletPetalStudy.com)

It really is a nice name for a clinical trial.  Maybe from now on I'll say I have the "Violet Petal" disease.  (Yea, maybe not).  It sounded intriguing so I filled out the questionnaire and I think I qualify so they will probably contact me.  I'm pretty much up for any new suggestions because I feel ALMOST better... just stuck with a pain that will not go away and it is inhibiting me from doing SOO many daily things, primarily having a full-time job.  So I'm open.  Then I saw that all participants will need to stop taking birth control hormones or hormones of any kind, so I thought it's probably a hormone treatment, which would not be surprising.  Still open.  But then I saw that 3 out of 7 patients will receive a placebo... meaning we will have to stop our treatment and receive NOTHING in return.  Yeah... not open to that.  My understanding is the hormones that mimic pregnancy or menopause in patients with endometriosis are what stop the production of new edometrial cells outside of the endometrium.  I've been told I will need to be on hormones/birth control my life... or I guess until I hit real menopause.  So stopping those hormones would mean a really high likelihood of increased pain, increased endometriosis, and having surgery again to remove the new areas.  Yeah, no thank you.  They had me until "placebo."

BUT I know this disease presents differently in all different women, so this may be a great option for some women.  And if it works, it may be something that can help all of us, which would be awesome, so I'm putting it out there!  It's even nice to hear that treatments are being worked on right now because there has got to be a better way to treat this disease.  Heck, I hope it's a wonder drug and they call it the Violet Petal hormone or something because that's just a lot of pretty imagery.  Good luck to those conducting the trial.

Pain

There are some words in life that I think encompass too broad a spectrum to be meaningful.  Cold... are we talking 40 degrees or -15 degrees.  It makes a difference.  Love... there are so many different variations and levels and intensities of love that sometimes I think having one word doesn't do all the people we love in different ways justice.  PAIN.  Pain is not a word I thought a whole lot about before I developed endometriosis symptoms.  I'd wager a lot of money that I had a different perception of menstrual cramps/pain than a lot of women, but we don't have any way to convey that accurately.  It is also completely subjective so what is painful to one person may not be to another.  When I first developed symptoms, the best way for me to describe my pain was to say that it felt like I was having menstrual cramps and pain associated with my period that just never went away.  But I realized that that was not enough to explain how badly I was feeling because most people probably don't experience excruciating pain one day a month.

My Story (Part 2) - The Frustrating Part

(not me, my dr, or anyone I know)

I ended the first part of my overall story with the scheduling with what was to be an exploratory laparoscopy.  Here is a link to the first part: My Story (Part 1)

This is the part of my overall story that I would change if I could.  I would change just about every part of it, but at the time I didn't know better, I felt stoned all the time, and I had not yet realized I needed a much more specialized doctor than just a primary physician.  

Anyway, I scheduled the laparoscopy and had no idea what to expect.  I don't know that I even saw my surgeon before surgery... perhaps briefly as I was signing papers.  My first concern was that when the anesthesiologist came to see me, he pretty much didn't speak English.  I was left wondering how he got certified to treat patients because a language barrier is not something patients want to worry about.  He might be a great doctor, I have no idea, but I was uncomfortable and wasn't sure he had comprehended or acknowledged anything I said.  I remember being wheeled into a cold, sterile operating room, and the next thing I knew, I was still in the operating room and was being wheeled back into recovery.