When it rains, it pours.....and I think I'm drowning.

So, it looks like the name of my blog will soon be changed to just Chronic Pain...maybe  "Guess the disease or condition???".  So many of us go through this when trying to be diagnosed with whatever it is we have...which may be more than one thing.  Currently, I've felt like I've been getting worse and worse and every time there's a glimpse of feeling better - something else happens.  I've been really sick since January...first was a cold, that turned into a sinus infection so went on Augmentin which doesn't like my bladder but I stuck through it.  Things got a little better but stayed exhausted and sinuses hurt and the headaches were bad.  Then my WBC's were through the roof and I had every indiciation of a uti - probably kidney infection - went on Levaquin...didn't get better.  Then had TONS to do at work and just wore myself down...so I knew when the last proposal was in I needed to go back to the doctor...extremem flank pain, my urethra HATED me...pelvic pain, blood in the urine, fevers the works!  So she said the WBC's were extremely high - put me on Macrobid & tramadol and told me to call back for the culture.  When I called back they said mixed flora - so not really a high indicator of infection but I was in so much pain it was work to get out of bed and EVERYTHING hurt sooo bad...especially that darn right kidney!

When I was at my urologist I broke down - which I don't usually do - but the pain and exhaustion was consuming me...even with the pain meds I was on.  This is when she called the director of the pain clinic and he recommended Tramadol and a visit to see him soon.  So I finally gave in and scheduled a pain management appointment.  My PCP is against them as she gives me everything I could need...but they don't prescribe medicine, just recommend it and do trigger point therapy etc.  Since I have so many problems with Ulcers, my Liver, nausea and  IC, etc.  it's going to take someone who knows what they're talking about and since he's the Director and has been on TV a lot (not that that means anything) I'm feeling good about it....and then he'll just recommend things to my PCP so her and I can manage it.  I'm in soooo much pain but I'm very scared about becoming tolerant at my age (26) too soon.  I was born tolerant and never responded to things like Tylenol 3 or 1 regular Vicodin.  I just need something to have down the road...and don't want it to be too devastating when i get off meds when/if *fingers crossed* I get pregnant.  Anywho, my urologists exact words to the pain specialist was "she's a really good girl and i've been seeing her a while and well, she's just spiraling down hill really fast and I hate to see her like this...this is bigger than IC - it's everywhere".  Greeeattt.

Anyway, the tramadol was awesome for the all over pain.  But not for my really bad pelvic and lower back pain.  So anyway,  my "sinus infection" got way worse and i was living with migraines everyday....excruciating body pain...insomnia...and crazy fatigue.  It's affecting life, my job, my ability to work on my house, my family, my boyfriend, my sanity - everything!  So anyways went back and was treated again for a sinus infection with Augmentin and once I didn't get better I went back...my nasal cavities were swollen and bloody and the headaches excrutiating.  She gave me a Kenalog shot on the spot and is 90% sure I have fibromyalgia as every trigger point sent me threw the roof.  So, she set up a series of every virus and autoimmune disease and lyme, etc. she could think of.  Meanwhile, I threw my hip out, my great aunt passed away - and I decided to be a genious and get a shiatsu massage chair.  IT felt soooo good but the next day (around 4 am) I woke up at 4 am and was in sooo much pain.  I swore if I looked in the mirror my entire back would be bruised.  Only part of it was but it was so bad I had to take my shirts off and couldn't even have my hair touch my back.  so it was working from home half naked all day and I could finally wear clothes 2 days later.  I couldn't get the blood work right away because of the steroid shot, but I got it last Thursday so I had to wait out the weekend.  Needless to say I had a 6 hour panic attack Sunday night.  Not horrendous but felt like I was crawling out of my skin, chest was tight, uncomfortable and couldn't calm down.  After about 3-4 hours I realized what was going on and took some valium and melatonin to sleep (I have been sleeping only 2-4 hours a night for almost 3 weeks now until i started the melatonin).  Still on and off, but anyways.

So it was really strange....my doctor's nurse called and said the only thing that showed up in my blood work was chronic fatigue.  But there isn't a test for chronic fatigue and I tried to ask her a bunch of questions but she didn't want to talk about it until I meet with the doc. to explain it next Tuesday grrrrrrrr.  So my guess is I do have Fibromyalgia and potentially Chronic Fatigue Syndrome...but at least I have answers.  I'm slightly discouraged as I've tried Gabapentin and Lyrica and both didn't work.  She started me on Celexa so I'm hoping it works a little....the amitryptiline made me feel like I was drunk until 1 pm!!!  In the meantime I haven't been using the Clobesatol ointment on my vulva so that spiked up again grrr...but my friend Alex has been very helpful at keeping me sane.  I can't wait til I figure out what this is so I can make a case study on her site (listed on the right - Vulvar Vestibulitis Relief).

So, anyway - I picked up all my radiology work to take to the pain specialist friday and found out i have "multiple stones" in my left kidney - here I thought I passed the only one i had!!!!! So they're deep in there but makes me nervous that there's more. 

I guess the moral is it just feels like one thing after another and I'm sooooo exhausted all the time...then I get really hot and feel like I'm going to pass out even when I do the smallest things!!!  I'm glad I'll have a "diagnosis" and can work on what to do from there...but I'm not looking forward to this pain...it's a scary thing, but it could always be worse.  I'm blessed to still have what I have and the support that I do - I feel soooo deeply for those who are going through this without support...I can't imagine - bless you.

Well i'll keep you posted as to how it goes..... and wish you all a pain free and peacefull night of sleep tonight :)

Vaginismus on Dr. Oz!

So I just wanted to put this out there to folks who have any type of Pelvic Floor Dysfunction problem - even if it isn't Vulvodynia or Vulvar Vestibulitis or Vaginismus (as Dr. Oz is referring to as "Vaginal Panic Attacks" - and I don't really know why...but anyway).

I saw this episode the other day and they finally got it up on the site and I got soooooo excited because it's the EXACT same type of electronic biofeedback device I just started using in Physical Therapy!  My first time through PT (which I'll explain a little later when I talk about PFD) she used the external electrodes that you see Dr. Oz put on the woman's arm.  She placed one right next to my vaginal opening and one on my abdomen as a control.  This time around, since I've been diagnosed with VV as well, I got the "little penis" as I like to call it - which is the little white insertable electrode you can see in this Dr. Oz clip.  Then the program Dr. Oz shows is the EXACT one I use too, so I just got really excited!

I do the biofeedback both laying and standing so I (and my PT) can see the difference.  The internal probe has been a much better tool as it gets right next to the muscles internally that spasm....although when I hold for a long time I start to get incredible pain against my coccyx bone (feel like the muscles are being pulled right off!) but afterwards it hurts internally - so its sooo weird how pain can trigger in different areas.

Another benefit of the internal probe is that you can also hook it up to a little machine (kind of looks like my Tens unit, but more like an electric heat control box - the ones with a knob you turn up for more heat and down for less you know?)  Anywho, she hooks it up to this and I can either use it for frequency or pain...it then acts similar to my tens unit sending electronic impulses inside to help calm the muscles.  I personally know that I am constantly contracting my muscles down there - especially on my right side, so having started biofeedback has made me think much more often throughout the day that I need to calm down and relax and take a few deep breaths and stretch.

The second video I found yesterday was Melody Thomas Scott (who plays Nikki Newman on the soap opera The Young and the Restless - my mom was obsessed so I learned to love it :) )  - well as a lot of you with IC know, she has IC and has been in remission for a while and is a huge advocate - I love having celebrity advocates for these diseases as for some reason it seems to make it "Real" to folks who don't understand it.  I don't know how many celebrities would come out and say "Hey I have a problem with my vagina and it hurts when I have sex!!!", but hey...the attention really helps the cause.  So this video talked a little about IC and her experience with it - noting that it is incredibly painful and serious.  I can't find it today but will upload it as soon as I can!

Anyway, I just always get so excited when I see these things on TV, to bring attention to what we go through, so here is the Dr. Oz Link:

http://www.doctoroz.com/videos/vaginal-panic-attacks

Vulvar Vestibulitis

So I'm going a little out of order here and will get back to where I am with my IC treatment as well as PFD, etc. but I had my second treatment Tuesday for my Vulvar Vestibulitis so I felt like it was a good time to talk about it.  And sorry in advance because this is going to be a reaaaallly long post - but it's my entire treatment for Vulvar Vestibulitis.

This is actually an important post for me, because it's the reason I started blogging about my experiences in the first place.  Not BECAUSE of the VV or the injections, but because when I found out I had to have injections down there...as you'll read - I freaked!  So I did what I always do - looked anywhere and everywhere online to find something about these injections.  That's when I came upon Tamra's blog (Living with Vulvar Vestibulitis - linked on the right).  Although her treatment was different then mine, I felt soooo much better reading about a personal experience of someone who had actually had shots in their vagina! I never knew that happened and she had done it and documented it and shared it.  I couldn't believe how much anxiety it relieved just hearing her story and that - even if it hurt - it was ok...just another treatment.  And it wasn't some medical explanation...it was a real person, telling a real experience.  That made me think - even if our stories aren't the same...I should be sharing mine, so that one person can read what I go through and know they aren't alone and see what I've tried.  Something that works for me, may not work for someone else and vice-versa...but it gave me a sense of comfort, so that's why I started - and I have Tamra  to thank for that :)

So now, back to my story - for those of you who don't know -  we are talking about all sorts of pain in the "va jay jay" (my dad can't handle me running around saying "vagina" so this he can handle, haha ).  I have generalized vulvodynia as well as vulvar vestibulitis. 

Vulvodynia is chronic pain in the vulvar area.  For some people it's very localized, and others its just everywhere.  We have to be careful with soaps and the acid in our urine and exercise and wearing pants...just about everything.  This all came to light immediately following my last surgery in October 2009 (although the symptoms - I just didn't know they were symptoms - I had for years before).  I was getting a lot of pain and discomfort down there.  I started to get periodic bouts of extreme sharp pain (more on my right side - which may or may not be part of this), and started to  become much more aware of burning and pain when I wore tighter pants, crossed  my legs, sat a lot, having underwear rub against me, wiping after the bathroom - anything and everything was just so painful.  And sex - although my serious boyfriend of 3 years and I are GREAT together (not bragging, just lucky :) ) - started to really hurt more than normal (I say "more than normal because I always thought I guess this is how it is - it just hurts! until my mom - who I'm obviously very close with since I had this conversation with her - told me its not supposed to hurt!)  Upon penetration it always hurts and afterwards I feel like he was wearing a sandpaper condom!  So, in any case it got worse and worse until I brought it up with one of my Urologists at UPenn as well as my uro at Hershey Med - both were convinced I had vulvodynia - and both offering up "the best of the best" for me to see to have it treated.

Well I looove my gyno - she's so caring and just awesome and so I thought, you know what...I'd just like to see her first to see if she even heard of it!  So I set up my appointment (which was about 3 months out of course) and waited.  In the meantime, I went without underwear when I could and had lidocaine ointment left over from a really bad hemherroid so I used that down there which really helped.  So the moment of truth came and she took one look and said I was horribly red and irritated.  I told her it basically took a muscle relaxer and vicodin in order for me to sleep after sex.  I'm one of the lucky ones who can still enjoy sex - as a lot of women have just given up as its too painful (and that makes me very sad for them and their husbands, so I really hope my talking about this can help at least someone with some options - no one should have to live without intimacy with their partner)....but this was getting out of control fast.  I told my gyno what my doctors thought and she said, although she was sureI had vulvodynia all over because of the drastic redness and swelling among other symptoms  (mine's worse on the right side), she wanted to do the "qtip test" for something called Vulvar Vestibulitis.

For those of you who don't know specifically about Vulvar Vestibulitis - I found out really fast in that appointment, so I'll tell you that it's more localized to the entrance to the vagina...inflammation of the glands right inside the vaginal opening. So my doctor performed something called the "qtip test" where she pressed on different areas with a qtip and asked for my reaction.  Well just about everywhere she touched with that darn thing sent me through the roof - It just burned sooo bad (hence the sandpaper feeling!!!!).  So her options were treatment with Valium and Elavil (Elavil I tried and made me too out of it...like I'm not enough already!  And I was already on Valium which was good).  She also started me on a steroidal ointment called Clobetasol Propionate for the specific opening and other areas that were irritated, starting off with more applications and slowing down to once a day if needed.  She also wanted to start me on a series of injections - YES - whatever you're thinking - that's where the needle goes!  The way she did it was to use lidocaine and Kenalogg (a steroid) and do a set of injections, then wait 6 weeks and do another set and then see how I feel and possibly do a third.

So down to my specific experience with the treatment. Needless to say I was a nervous wreck because who wants needles down THERE when they are in constant pain - let alone, um....EVER!! And let me tell you, I've been through over 5 surgeries and kidney stones and I think I was most scared of this, haha. Luckily, I have my wonderful b/f who went with me as I wasn't sure how driving home would be and I took some of my valium and a pain pill ahead of time - so he was my chauffer.  Before she started, she actually showed him the areas and he could see the inflamed spots that were the worst - he actually commented they were on the side that shoots me through the roof in physical therapy, which I'll get into more in my PFD posts. But it's definitely something to think about - how all this stuff is related.

So I don't want to say it wasn't so bad - because the first few shots hurt but weren't horrible...but the last two (in my most sensitive areas) were really bad.  I'll leave it at that because it was a lot of pain.  My boyfriend held my head (as I was affraid I'd break his hand :) ) and he said I shook horribly, espeically on those last two and moaned a little, but she kept asking if I was ok throughout it. After the injections were over she rubbed in the areas externally and internally very quickly. All together it was about 30 seconds and *poof* it's done. Not like a kidney stone that goes on for hours...its done. I bled for a little while, and was shakey and just had to go through a little emotional period and stuck a pad on and was out of there. I did feel a little like I got punched down there the first 2 days after or so- but that's how I usually feel after I get a shot into muscle.  It was however, incredibly bruised, which I think is normal considering all the nerve endings.  A few days after I was already feeling less burning and at my PT visit a week later we noticed my pelvic floor muslces had calmed down a bit and I still didn't have a lot of sensation on the right side (we think that was the lidocaine).

So that was the first time.  My second round was Tuesday and needless to say I was SOOOO nervous before - verge of freaking because I kept thinking about those last 2 shots. I should mention, on top of having these done, in the past 2 weeks I've had what they think was a kidney infection, sinus infection and the flu all at once so I wasn't feeling great as it was, but she said if I was up for it she would still do it - and I just wanted to get it over with! So I did the same prep as last time - Valium and pain pill and I also did feel a little confident that I was feeling better and told the doctor when she came in. She did the qtip test again just to map out the problem area and noticed dramatic improvement and my painful area had really shrunk. She didn't even need to use the full dose of the injection! There were still 2 areas that were really painful (more of an intense burning feeling) when she touched - which were those on the right and left that were bad the first time - but the whole experience was better than the first. It was still pretty painful but not nearly as bad as the first time at all!

So far the recovery is better than last time too - not quite as sore and after having my boyfriend inspect (really how romantic is that - spread eagle with him checking out the bruising...hot, I know haha) he said that the bruising was definitely there but not as wide spread as before, it kind of yellowed up my vulvar lips before, but not this time, just that immediate area.

So as of now, she thinks that will be it and I can continue the clobestal ointment in the broader area if need be. I am hoping I don't have to go back for number 3 but she said it was up to me and how I feel. I guess I should note that sex hasn't been as regular lately between me being sick, my boyfriend being sick and each of us traveling for work, so once I get back to more regular sex I think that will determine how this thing is going to pan out...hopefully it's less painful!

So that's it - that's my personal experience with the injections and although it sounds painful and scary (sorry I didn't want to hold back!!)- it has been incredibly worth it!  I have some friends who have had them done with natural supplements such as Traumeel as well as allergy meds such as chromolyn and been helpful. I've also known folks who have had weekly injections. I have other friends who have gone more of the naturopathic route with coconut oil and traumeel creams as well as seeing naturopaths for full body treatments and have been feeling better.  This is just my personal experience and I know folks it hasn't worked for...I just wanted to share what I went through.

With Vulvodynia and Vulvar Vestibulitis it's really a lifestyle change; soaps, tight clothes, creams, lotions, pads, underwear, medications, supplements, vitamins, foods, sex - all of this stuff can really effect us.  I just hope this continues to help and keep getting better.  For anyone going through this or considering it, feel free to email me with any questions :)

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 :)