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.

En-Doe-Mee-Tree-Oh-Sis

Yep, I have a crappy disease/sickness/whatever that is called "endometriosis."  It's a crappy disease already, so why does it need such a crappy name??  It's just a word that does not suggest anything positive.  It's also clunky to keep saying.  It's awkward and hard for other people to remember.  And even if someone does not know what it is, any high school graduate can guess it has to do with reproductive organs and right away that can shut some conversations down.  Especially with men who don't understand the whole menstrual cycle thing already.  And for a disease that needs to be more well-known, well this is not helping our cause.  I think most well-known diseases have better, catchier names: Ebola, Cancer, Bird Flu.  

I think it needs another name.  Even when I write about it, I find myself using pronouns or not wanting to type out "endometriosis."  It is just plain awkward.  It even makes sentences feel awkward.  Too many syllables, first of all.  Can't we get something like... Pain-cer or Hurts-all-the-time-osis...?  More fitting at least.  Or... You've-never-heard-of-me-but-I'm-gonna-make-your-life-hell-acitis?

What do you think?  Anyone have any ideas for a better name?  Something that's not so clunky to type or doesn't feel as ridiculous to say?  Something I can type in my posts so I don't even need to THINK about fitting "endometriosis" into sentences?  Or something fun... like... "rainbow-killer?" 
;-)

I am taking suggestions.  

Stress

So I have a list of topics I have yet to post about and I haven't been feeling well enough to write about any of them today.  It's very frustrating.  I'm feeling more pain for the past few days than I have since probably before surgery.  I haven't done anything exerting and yet there it is.  I guess I could direct you to the posts on tiredness or setbacks but I'm typing my post today because usually I would not chronicle today at all.  I was in pain so I had no desire to think about anything interesting I could write about earlier and now I am ok because I took extra pain meds but not thinking as clearly as I would like.  So normally I would just skip today, but days like these are important in understanding what my life is like still even though I would love to hide them away and deny I still have them.  Instead, I will give you a brief insight into my stream of consciousness during times like these.  

I hate to let myself admit it but today's pain makes me nervous.  It feels like pre-surgery pain...  I am hoping that I can attribute it to the overly stressful two months I've had because otherwise something might be wrong and I just do not want that at all.  I'm supposed to be gaining strength and overall health and having LESS pain, but that is not happening right now.  I was annoyed to be feeling bad while my sister was visiting because I couldn't even really sit and chat.  Small talk is the first thing to go when I feel pain.  (For my purposes, I would say that I'd been feeling "discomfort" mostly.  It's annoying and can interfere with me get my real life back, but it is way better than what I would call "pain."  For the past maybe three days I'd call it pain.) 

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.  

Weekend

I am still not feeling well today... a good night's sleep seems to be seriously eluding me.  I may post later today if something strikes me, but my sister is visiting for the weekend... supporting my mom after her cancer diagnosis so if I end up not posting, I will be spending time with her before she has to leave again.  I miss her... I wish she lived next door!  

Lily

(Lily)

Pets.  Throughout my life, I never really had a strong appreciation for pets.  I had a guinea pig when I was young and I would pet a cat  or dog if I was at someone's house but they never invoked a strong emotional response in me.  And, to be honest, dogs often slobber and I never found that endearing. After college I ended up with a cat by pure happenstance.  A friend of mine was trying to give away a kitten and brought him over to my apartment one time, which honestly is cheating because all kittens, puppies, babies are adorable so of course I ended up with my first real pet... a cat who unfortunately, died suddenly at the age of two.  In a very strange confluence of events, I then ended up with a new kitten, already named Lily.  Lily is the cat I've had since before I was sick and she is the one who has opened me up to a whole new bond with animals since I've been sick.  

Tired

Today is one of those days... those wicked cycle days where I had a lot of pain yesterday, so I couldn't sleep, finally got to bed around 7am (yeah... that's not a typo), woke up around 12pm and now I am so tired I feel drunk.  The good news is my pain is much better.  Go figure.  I was not super surprised to not feel good yesterday... it has been a stressful couple of months and waiting for my mom's cancer diagnosis I think just put me over the top.  (See Setbacks).  It's been very important for me to get a regular night's sleep in order to feel well and I haven't had that for a week and last month was not great after my aunt passed away, so I just feel like my tiredness hit me like a ton of bricks today. 

Awareness

So today I came across a post on another blog that I think bears re-posting.  Since I am living with endometriosis and I didn't even know that a lot of awareness events existed, I can only guess that most of you didn't know either.  I have learned that March is Endometriosis Awareness Month (along with my birthday!), yellow ribbons symbolize support for Endometriosis sufferers and now this.  In fact, here is the main article on the EndoMarch website.  I am pretty excited that someone else thought to describe endometriosis like I did!  (I did NOT write the following two articles.  If you want to read more from them, please see the cited sources).

"Endometriosis: the cancer-like disease you should know about

Want to make a difference in approximately 200,000,000 lives?
Then please join us for the first ever Worldwide Endo March (Million Women March For Endometriosis), scheduled to occur in dozens of capitals around the world on March 13, 2014.

Though you don’t hear much about it in the news, endometriosis is surprisingly common, with at least 1 in 10 women and girls, usually of reproductive age, affected and suffering with crippling pain in the prime of their lives. Yet, often they receive woefully inadequate medical care, including 6-10 years delay in diagnosis, mainly because endometriosis pain has been accepted as normal for centuries. Pre-teens and teenagers are especially susceptible to misdiagnoses.

You may have heard that endometriosis can destroy the uterus, ovaries, and fallopian tubes. But did you know that it also:

• Shares many features with non-fatal cancers?
• Can metastasize much like cancers essentially anywhere in the body?
• Can potentially cause irreversible damage to essentially any organ or structure, such as: the lungs, liver, heart, eyes, kidneys, brain, bladder, bowel, diaphragm, nerves, and muscles?
  
  Your sister, mother, daughter, or even you may have it, yet be given the wrong diagnosis and therefore the wrong treatment, all of which can potentially lead to irreparable damage, infertility, and a life of unspeakable pain.
  And so, that’s why we’re marching – to turn back the tides of centuries of misinformation – and let the world know that endometriosis is a serious disease with severe medical consequences if left untreated."

(Courtesy of http://www.millionwomenmarch2014.org/)

My Story (Part 1) - Beginning

I think I need to chronicle my "journey" for a few reasons.  One, for myself to maybe get some perspective.  Two, for people in my life who know the basics but never got enough details.  Three, because I know it will lead to a lot of random topics as I go, which are always fun!  So I will post my story in parts... this is the first one :)

In November, 2009, I experienced a very sharp pain in the middle of the right side of my back that wasn't responding to any over the counter pain meds.  I also had a constant urge to urinate.  So I went to the doctor when I got back from the final game of our volleyball season and was diagnosed with a kidney infection.  My doctor gave me Vicodin for the pain and Cipro (a strong antibiotic) for the infection.  Well, I found out quickly that the Vicodin helped relieve that pain and I was allergic to Cipro.  I got bumps on my arm that seemed to be a rash so I had to start the antibiotic cycle again...  (You have to take them for a full 10-14 days and if you miss a dose, or I guess if you switch medications, you get to start over).  So I was out of work with a doctor's note until the infection when away.  At this time I was seeing a primary care physician who I had been going to for a few years but I had never really had any cause to see her about anything serious.  I also was covered insurance-wise through my work with insurance that had always covered anything I needed, but I would soon learn the Beauty that is Personal Choice.  Seriously, I know most companies don't pay for it and I had never had reason to feel I should pay for it, but that would be great insurance to have in my situation.

Setbacks

I try to stay positive and think about my goals and about what I can control but sometimes when I think about the setbacks I've had that I have had no control over, it can be overwhelming.  I feel like a big cloud of bad luck has been just hovering over me for a few years.  I never thought about luck before getting sick.  I used to think that a setback would only serve to make me a stronger person in the long run... but when you pile a bunch of them on without giving a bit of relief or showing me SOMETHING good that has come from them, it gets to just be too much.  So please don't respond with cute little quotes like "A setback is just a set-up for a comeback."  Or "Whatever doesn't kill you makes you stronger."  Just... no. 

Since my first surgery, aside from all the daily endometriosis stuff and procedures or things associated with that... my grandmother had a stroke... my aunt was diagnosed with breast cancer... I had a kidney stone that led to a bladder infection and UTI... a family friend committed suicide... I got a random infection in my toe... my aunt passed away... and today we found out that my mother has cancer.  (And no, the irony of my previous post actually talking about cancer does not escape me). 

Pills

There are some days I look at my pill box and at the 23 pills I take daily (not including pain relievers) and I just can't imagine swallowing them all.  Usually it is not so difficult, although with the weird tastes I can't take them with water.  The gel caps are easy, the regular capsules are okay, the large solid ones are the worst.  On the plus side, this is less than I used to take.  

I find when doctors or the ER ask you to fill out paperwork, there is an inevitable "please write down any medications you may be on" section.  I never gave it much thought.  Now I find it intimidating.  I don't want to write out all the stuff I have to take just to function, I don't want to look like such a sick person.  My pet peeve is going to the doctor's office and having a nurse ask me if there have been any changes to my medication since the last time I was there.  I will say "no" and then they proceed to go through every single thing listed in their database anyway.  Why bother asking about changes then?  I have to say, it's a small thing but it drives me crazy each time I go to the doctor!  

My Cancer Hypothesis

(Disclaimer: The following is not meant to make light of anyone's hardships or trivialize cancer in any way.  My only desire is to try to explain endometriosis using a well-known disease).

CANCER.  
That is a word that strikes fear in most people, no matter who they are.

ENDOMETRIOSIS.
This is a word that strikes fear in pretty much no one.

Both involve the growing of cells outside the region of the body in which they should be growing.  Both cause pain.  Both can cause a significant decrease in quality of life.  Both can grow anywhere in the body.  Both can cause problems in the body outside of the area where they originated.  Both have a wide range of severity and prognoses.  Both have no known cure.

I have spent years trying desperately to get the people in my life to understand what I am going through.  I've made inroads, but it is a slow process.  For some reason, the fact that endometriosis stems from the uterus seems to trivialize it to some people and make others uncomfortable.  But if I were to tell someone I had cancer, I believe that I would immediately receive sympathy, understanding and offers of help.  If I had cancer, people would have a reference from which to talk about my disease.  They would ask about treatment and oncologists and pain management or even possibly surgery.

Friends

One consequence of everything happening so quickly and the nature of the disease, is that I ended up cutting off a lot of my "social" friends.  The thought of rehashing everything I was going through to everyone I talked to got to be intimidating and at the beginning I didn't know what was going on.  I was just put on a ton of medications that made me feel like I was existing underwater or something.  Also, I had a lot of friends in the volleyball community and talking to them just reminded me of all I had lost so suddenly.

I want to dedicate this post to three friends... HM, MH, CD.  They get me through just by allowing me to talk or to need space and not judge.  All I feel from them is caring and that is so important.  I wish they lived next door, but knowing I could talk to them about what I was going through, or even talk to them about what I wasn't going through when I needed a break.  They never questioned whether I was a drug addict (as one doctor implied), they never thought it was in my head, they never insinuated I was being lazy and if I would just do more, I would feel better. 

Perspective

In the course of writing my post yesterday, I decided to google "endometriosis blogs" and see what was out there.  Maybe not the best idea.  There were a bunch of blogs, but they were, for the most part, seriously depressing.  One that stood out to me was actually titled "Endometriosis and Suicidal Thoughts."  I didn't read further.  I can state with certainty that even if I have to deal with chronic pain for the rest of my life, I have no desire to end my life.  

Anyway, these blogs and their titles made me think about my perspective.  I try not to dwell on setbacks or pain because it can become frustrating and overwhelming.  I wonder though if by not sharing the really bad times if I make it harder to understand what I am going through.  I wake up everyday and the first thing I think of is "check your pain level."  I'm probably not going to write like the world is ending or that I have it SOO bad because in my opinion, there is always someone who has it worse than I do. I now refuse to answer the question "rate your pain on a scale of 1-10" because I am terrible at it.  I was in very bad pain, but kept thinking there must be someone out there in worse pain than me, so that precluded me from answering 10 and probably downplayed what I was going through at the very beginning. I've learned how I need to answer that question if I'm in an ER but to me it is way too subjective to be effective.  That doesn't mean my life is easy.  I mean, 3 years ago, my life was pretty awful.  I was so medicated and the pain was so bad that today, I feel almost glad that I'm doing better than that.  But I'm not healed.  There is no cure for endometriosis.  

Causes

So... what is endometriosis?  Endometriosis is a gynecological condition in which cells from the lining of the uterus (endometrium) appear and flourish outside the uterine cavity.  I think more than that will best be answered as I go along, but you can get some basic information from Wikipedia here if you would like. I noticed a couple of things in that Wiki article that my surgeon contradicted but it's a basic overview. 

Along the way, many people I know have asked "how I got" endometriosis.  Essentially, that question is asking for the underlying cause.  Unfortunately, there is no good answer other than being the unlucky one or perhaps a "perfect storm" of circumstances.  Endometriosis is only 6% genetic, so that likely lets my parents off the hook.  It is also possibly has an auto-immune component but I haven't learned enough about that to discuss it.  It is on my list to ask my doctor about at my next visit.

Introduction

I am new to the concept of blogging.  It has always seemed like posting a journal entry online but I don't know why anyone would want to do that when the point of a journal is privacy.  So I am changing my outlook to a therapeutic one.

I am a 33 year old female, diagnosed with endometriosis almost four years ago.  I have gone to multiple doctors, had multiple surgeries, lived with chronic pain, and faced multiple setbacks.  Before all of this, I did not know what endometriosis was, other than the most basic of definitions: it's when discharge from your uterus lands somewhere in your body where it should not be.  I had no idea what I was in for.  I never knew it could be the cause of such intense pain, I could no longer go about my normal life.  I certainly didn't know the scope of the disease, or the massive impact it would have on my life.  I had no idea that the spectrum was so large.  Most women have some endometriosis and never know about it.  Some have it so severely that it impacts their ability to ever again have a normal life.  I am hoping and working every day with the goal of not having to put myself in the latter category.