Welcome to my Blog!

So this is my first post since deciding to start blogging about my personal experiences with chronic pain.  I titled it "Chronic Pelvic Pain" as that's my main complaint, but I suffer from various other types of chronic pain (you'll notice the weblink is actually 'chronicpainwontwin') so all types of things will come up at one time or another I'm sure.  I chose to start blogging about my experiences after spending years online trying to find others who were going through what I was going through and their stories.  No matter how much medical information you can dig up, it's personal experiences that give you that feeling of "Yes! Finally - someone else understands and knows what I'm going through...I'm not just dreaming this up - it's real!".  Some days I think I'm so lucky that  (knock on wood) nothing I have is going to kill me, so that's a plus right?!  Other days I just self pity and -lets be blunt- it just friggin sucks!  It takes a toll on you, your friends, your family, your significant other, work....etc.  And it really just SUCKS!  But, I'm still one lucky girl for everything I've been given.

So I guess I'll start out with my story so you can understand a little about who I am.  First, I'll start out by saying I want to offer up my personal experiences so folks can learn from them and understand the different things I've personally been through.  That being said; A) I'll be fairly blunt and graphic if need be because a lot of my problems revolve around my pelvis and vagina (or va jay-jay as my dad MAKES me call it), and B) these are only my experiences and for every bad or good experience I've had - I've talked to 20 people that have had the opposite reaction - so always talk things over with a doctor...this is just my story :)

So, I'm 26 and am an east coast gal.  My undergraduate degree is in Psychology (so I can self-diagnose my craziness :) ) and my graduate degree is in business.  I work in Marketing and have THE best family ever.  Crazy younger brother who I adore even if he does drive me crazy sometimes, the most loving and caring dad ever (epitome of daddy's little girl here, yup I admit it and I know he'd do anything for me) and my mom is just my best friend in the world.  I feel guilty because she hates that I am going through this...she's always the one researching for me and I always have the best time with her.  I also have the best boyfriend in the world - he goes to so many of my appointments (we're talking going to physical therapy appointments and learning how to do the internal treatments...not in a good way, haha and getting shots "up there"). Even if he doesn't neccessarily understand, he is always there for me and takes care of me.  I am a very lucky girl to have someone who is being supportive and I love him for that. My best friend in the world has been with me since I was 6 and I'll always have her to turn to. Have some wonderful grandparents as well....both here and gone...still helps to talk to them even if they aren't here somtimes :)  So I have to say that even if these people can be cause of my stress sometimes - I'd never give them up :) 

Now I'll talk a little about this whole Chronic Pain thing - although I'll get into details about my treatment experiences in later posts.  Just will start from the beginning and bring you all up to now - that way you know the whole story - so sorry this will be a long one :)  So from the beginning, as long as I can remember I would get incredible pain in my right kidney area once in a blue moon when I started to urinate.  Comes on rather intense when I go to start a urine stream and builds to wayy above a 10 on the pain scale if I don't stop immediately. Still happens every now and again and they haven't figured that one out. Starting having UTI's (or what I thought were UTI's) around 18, around when I started having really bad allergy/sinus problems.  Eventually, ( in 2005) I was sent to a urologist for a cystoscopy with hydrodistention and it didn't come back with much of anything.

So...moving along, my senior year in college (2006), I began having tons of pain in my kidney area and long story short - they found a cyst about the size of a baseball on top of my right kidney which at the time could have been attached to my kidney, liver, or adrenal gland - they didn't know.  And the folks in my area wouldn't operate since they didn't know which system it was.  So I went and had that removed (again, I'll go into more detail later if folks are interested) and it turns out it was in my adrenal gland so they removed that and I was on my way hoping that my problems would go away with that huge cyst!

Needless to say that pain came back and I was devestated...as did the "UTI's" but they were worse, I was in constant pain in my pelvis and my muscles felt so tight! I felt like A) I had done a full groin work-out the day before and B) like I got nailed with a baseball bat.  After it continued to get worse, I was sent for another cystoscopy with hydrodistention in 2007.  Came back with severe Interstitial Cystitis.  I'll also explain more about this in another post, but for those of you who don't know, my bladder is chronically inflamed and has little bloodspots on them called glomerations.  There's no cure and many theories, but the feeling can basically be described as pouring alcohol on a wound.  Almost immediately after that I was diagnosed with Pelvic Floor Dysfunction or PFD - i.e. lots of problems with the muscles in my pelvis.

So along the way I've tried many treatments that I'll get into, but most recently (last year) I had my gallbladder out due to chronic cholecystitis, then a kidney stone, then my appendix out.  After that I just felt like crap for a while because it irritated everything!  And my vagina started KILLING me - to touch, to have sex, to wash, to wear underwear - it was crazy!  That's when I was diagnosed with both Vulvodynia (general pain down there) and Vulvar Vestibulitis (specific painful areas right inside the vagina).  I've started a treatment that's helping with that thank goodness.

I'm also soon seeing a rheumatologist for a possible Fibro diagnosis, as I have fairly severe widespread pain.  Guess I should mention I had knee surgery when I was younger (errupted cyst) and a tonsillectomy somewhere in there (from chronic tonsillitis).  I also have fibrocystic breast disease and have had 2 lumps removed to date and a few still in there that just get checked every now and then.

So, basically my day is wake up feeling like I got hit by a truck (you know, like that feeling after you haven't worked out in forever and do wayyy too much), have to pee at least 2-3 times during the night and tons during the day...am pretty much in pain most of the day and after sex and have about 5 specialists and a PT and PCP. 

I never thought my life would be like this right now...but it is what it is and I have my ups and downs...I just hop for more ups than downs :)  I hope I can offer my experiences to some of you and let you know you aren't a long and give detailed experiences with some of the treatments I've tried in case you're planning to try them.

I feel for all of you who go through this...you aren't alone and you're allowed to pity yourself sometimes...you're allowed to feel crappy.  Just try to realize you are never alone and that things will be up some days and down others and I wish you all pain free days and nights - and to try and keep your sanity through all of it :)