Let's Talk about Interstitial Cystitis....Part 1

So, who knows the who/what/when/where and how's of my chronic pain...although I can make my guesses, but if the doctor's don't even know...well then I sure don't!  All I know is what I've been through, go through every day and will go through.  And I know I'm trying my darndest to not let it scare me about the future and live a great life (which sometimes may include things that aren't so great for my pain levels...but hey - I am going go live a great life!).
So I figured I'd focus this post on explaining the diagnosis that "kind of" started it all.  I say "kind of" because, if you read my first post I had some problems before that including an adrenalectomy that was somewhat crushing my kidney so maybe that started it all - who knows, that caused me tons of pain for a long time and they thought it attributed to some of my earlier UTI's.  In any case, after my adrenalectomy I prayed I would be better, so in my first post you'll notice my mention this random pain in my right kidney upon urination - the first time it happened after surgery I bawled.   Then came another "UTI" that again showed no infection and was continually in pain, I cried....and cried....and cried.  I mentioned back in 2005 I had a cystoscopy with hydrodistention that came back fairly normal. 

Well things finally hit a wall in the Late Winter/Spring of 2007.  I was at work and had been feeling crappy but what else was new.  Well this particular day I was week and in a lot of pain...I went to the bathroom and when I went to pee felt sooooooo much pain in my urethra I almost screamed....looked down and just saw lots of blood.  This had never happened to me before so here I thought maybe I was passing a kidney stone ( I knew I had one lodged up there from a previous CT scan).  So I went and told my boss as I was shaking and one of the managers drove me to the hospital down the street from where I worked where my dad and boyfriend met me.  I gave a urine sample but was in so much pain and they told me it could still be a few hours before I saw anyone...so we made the decision to move to the ER near my house.  Long story short - turned out to be a horrible kidney infection, they got the results back and it was full of blood and puss (ugh i just hate that word) so they put me on antibiotics as well as an IV antibiotics and gave me some pain medicine and sent me on my way.  Finished the antibiotics and started to feel better until about a month later I ended up back in the ER with the same doctor after I had that huge pain in my side while trying to pee and lots of blood again.  Turned out to be the same kidney infection - just that the first time the 2nd set of antibiotics didn't get it...so they gave me another IV dose and sent me home with another antibiotic.  He said if this one didn't clear it up theyd have to admit me as there was no other pill form they could give me to combat it.  This time, it worked...hey- maybe this was really the beginning of it all who knows.

So moving along, this is officially where the  IC story starts.  After another series of "UTI's" that showed high WBC but not bacteria I was sent to the urologist again who decided he needed to run some more tests, after a few tests (like having me use the bathroom and measuring how fast it came out - mine was very slow and in spurts - starts and stops, and then checking and seeing I wasn't fully emptying my bladder, and pain upon internal examination) in October of 2007 I had THE cystoscopy with hydro that showed it all. 

I remember exactly when it was because my boyfriend and I had been dating almost a  year.  My company had a retreat in Vegas - VEGAS! The first time my boyfriend and I had ever been and BOY did we live it up.  I had to work part of the time but we got into the hottest clubs and stayed at some amazing places and spent a day on doonbuggies - just amazing.  Of course- aside from this growing bladder pain (and my thinking I had a UTI) - my hemheroid problem emerged the Friday night of our trip (we left Sunday morning) so I spent all night that night in and out of a bathtub - all the usuals - preperation H, etc. were doing nothing.  Luckily I had brought along some pain  medicine I had saved over from a procedure...and man.  Try going to a club til 4 am, dancing your butt off then walking the strip - then the flight home??? Forget it - I literally laid across my bf the entire time.  Finally got home and got a prescription steroid ointment that made it go away in a day.  But the bladder pain was still there even though i'd finished my meds.

Anyways sorry for the tangent, this is all so clear to me because that was the end of September and the first week of October was this cystoscopy w/hydrodistention.  I was so nervous this time because my symptoms were much worse.  The first time in 2005 was more because of the issues with what we later found out was my adrenal gland and I wasn't having many problems with my bladder.  But this time I was in constant pain!  So my dad took me and the doctor talked to him while I was coming too.  The doc. had another one right after so I woudlnt see him until my follow up appointment but I could tell by the look on my dad's face it wasn't good. 

He told him the doctor said my bladder was incredibly small - and had shrunk fairly fast as the last time it was on the small side, but not bad and in only 2 years it had really tightened up.  Then he showed him the pictures...glomerulations everywhere, bright red everywhere, swollen, irritated, just horrible - he said it was one of the worst cases he'd seen but thank god there weren't any Hunners Ulcers (which sort of suprised me because I have ulcers everywhere else, stomach, mouth, possibly intestines, so why not? - but thank god!).  At this point, he flat out diagnosed me with pretty severe IC and I was set for my follow up visit. I was scared and had no idea what to think or do as I had no clue what this was.  I was just out of undergrad but now had a full time job and was in my 2nd year of grad school.  I was tired all the time and in so much pain by the end of the work day, half the time I cried as soon as I got out of work, wiped my eyes, went and sat through class, and cried the whole way home.  So I researched as much as I could...found the IC network, found out about the diet and went back to my appointment hoping for a plan.  The hydrodistention caused me SOOO much pain this time and made things 50 times worse - I was ok for about 2 weeks and then in a flare for about 3 months!  All they would tell me was "it's normal and you'll start to feel better".

In any case I went to the appointment where the doctor basically reinforced what he told my dad and said that he knew I was in pain now but eventually the hydro should help and i probably knew more about the diet than he did and sent me on my way with only a followup with his PA.  I was devestated as I was in soooo much pain!  Needless to say I went to the follow up and she didn't have anything else to offer.

Now - this is the point i went back to my PCP and switched urologists.  I do want to make the point that this was the urologist that found my adrenal problem and sent me to the best doctor internationally to have my procedure and did diagnose me - from what I've heard he's really researched IC and is much better now - has patients he's treating that really love him so hopefully that's the case.  Moving along my PCP whos actually a PA-C but owns and runs the entire Doctor's office where I go and is very protective over me - basically i bring her research and she'll let me try things - is very supportive of whatever I want to do and wherever I want to go.  She is so amazing.  In any case, she sent me to the IC person in my area who happens to work for a huge University Medical Center in a huge Urologist Office but is a CRNP.  If you have IC and you're going there - you don't even see a urologist - you see her as she's studied straight from Dr. Moldwin.  She's technically still my urologist - but I've almost reached an ending point as far as treatment with her...which I'll get to.

So anywho I was very nervous for this appointment also.  I took all my files and the big seller was the pictures from the hydro - she said right away it was horrible.  And asked what he had prescribed me to start trying to help.  When I said "nothing" he said the hydro should start to work and he'd see me in 6 months.  She was appalled.  So she said she'd start me on the usual intro drugs - not all at once but Elmiron, Elavil and Hydroxizine and see where that got me.  She also added Baclofen to calm the bladder muscle.  Upon the internal exam I about jumped through the roof - this is when I was officially diagnosed with pelvic Floor Dysfunction (PFD).  She said I was off the charts and everything was off....she could feel it externally AND internally.  So she sent me to a woman who treated patients with IC and especially PFD and wanted me to start Physical Therapy Immediately.  I'll get to PFD in my next post as that has been the real trigger in all of my pain throughout these last 4 - 5 years.

So back to my IC, I tried, really tried these treatments but the Elavil made me a zombie at work until at least 2 in the afternoon.  I've since tried again with a combination of new drugs and while it helped a little - it made me feel horrible - quick sand...and I stayed on it this time much longer and that never wore off.  If I'm really bad or really can't sleep I may take one now and then...but it just wasn't for me.

As for the hydroxizine - I have no idea why but at first it helped with me sleeping and I don't really know the effect on the IC, but randomly I would wake up around 3 am and feel like I was going to climb out of my skin - it was only when I took the hydroxizine so I had to stop.  I continued the Elavil, started Physical therapy (which at first just caused more and more pain) and then she put me on neurontin to try...which didn't do anything at all.  This was all in the beggining to mid 2008.  All this time I was just in constant pain...trying to struggle through school and work and had another kidney infection in the meantime. 

Finally I called in an emergency to her office telling her I was at work and in a huge flare and couldn't take it anymore.  This is when she tried the first rescue instillation.  It was at this point that I realized how bad my urethra was...so tender red and swollen...Just completely irritated she used a lot of lidocaine!  After that treatment I felt better! I smiled and was soooo excited!  Until about 2 hours later when it wore off and I was back to where I started.  The next week the same thing happened and I didnt continue after that.

After I let her know the neurontin wasn't working she gave me some samples of Lyrica.  And after I took this I felt like it was my miracle drug - my whole body felt sooo much better (and I didn't even realize how bad my whole body had been feeling).  I could actually GET out of bed in the morning!  This feeling lasted about a week before it settled in and still helped but not quite as much...but after fighting for months with the insurance company i got my last denial - and couldn't afford the $450 bucks a month.

So up until last year - that's where I stood.  I told her the baclofen wasn't working either but she said to stay on it - she wouldn't try any other muscle relaxer nor any other drugs period as those were the proven tried and true drugs.  So I felt like I hit a wall.  At this point I started to have big problems and ended up having to have my gallbladder out - then a month later passed a kidney stone, then 2 months later had my appendix out, so everything else got somewhat put on hold.  I had been given some pain medicine to get through all of this time, so I was somewhat under control...although not feeling great.  That brings me to where I started to take things into my own hands....and to where I am now, which I'll write more about in my next post.  I'll also soon write about my PFD which dramatically ties into my IC so I can't really seperate them...but for the purpose of those with one or the other I'll try...

Hope everyone is having a happy and healthy day....and having a good pain day...we all need those.  I'll continue my story soon :)

Laugh of the Day

So I promise I'll get to more detailed experiences - I've already started drafting them!  As that's the main purpose, to convey my experiences...but lately I've been going through a really rough time both physically and emotionally for a number of reasons.  One thing you'll find out when I start talking a little more about my Vulvodynia and Vulvar Vestibulitis is that I'm currently in the process of getting Kenalong/Lidocaine shots (Down there- and oh yea...whatever visual or painful outch feeling you're thinking - its true) and using an ointment.  I have someone I communicate with that lives somewhat near me whom I haven't met, but we exchange stories - complain a little, ask questions and compare treatments.  She's on a naturopathic treatment route now, vs. the one I'm on and having success too may I add.

Anyway, the point of this quick  post is that I'm overwhelmed, exhausted and just feeling so low (aside from all of the pain and everything else that comes along with all of these chronice diseases) and after another of our long email exchanges- her last line was:

"Here's to normal, healthy, happy vaginas in the very, very near future for both of us..."

And that is the greatest thing I've heard in a while - something that someone who has no clue what we're dealing with would have a laugh at...but for us?  Because of all that we strugle with as far as this disease go - it just means so much more and just really turned my whole day around.  Whoda thunk at 26 that's what I'd be hoping for.....but you can't help but laugh.  Oh how friends can brighten your day...Hope you can brighten someone elses - I'm going to try to pass it on  :)

Be strong

I'm drafting another post on Interstitial Cystitis specifically and my experiences with it, but in the mean time I just wanted to jot down a few thoughts.  I've been through a rough few months physically and emotionally and all of that takes a toll on your body, mind and heart.  Along with the fact that a lot of us with chronic pain problems are on a lot of meds and possibly changing them often, it can affect your mood, your sleep, your job...just about everthing!  I hear often from people who are really scared - of their disease, of the treatments, of losing loved ones, of living this way...and I just wanted to tell you to be strong. 

It gets really  hard sometimes - but there ARE people who know and understand what you're going through and how hard this can be...how embarassing sometimes...and can make you feel helpless and alone.  Sometimes we even push away the ones we love or act like everything is fine when it's not.  I feel for all of you and am proud that you are living your life dealing with something that most people could never imagine...and for that you are already incredibly strong.  It's unfortunate...but it makes us stronger people even though we may feel weaker.

Have a great day - and do something that makes you smile....and someone else smile.  But most of all remember you are never alone in this... <3

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 :)