Wednesday, December 22, 2010

Huge Setback- PC

I'm in a living nightmare as I watch my life slowly slip past me.   I am once again in tin-manville.     My muscles are so beyond tight- both external and internal......    my GI symptoms have been thru the roof for a few months now... and that started to calm down only to be triggered once again.

My body needs relief , but I have no clue how to get it the relief it needs.    Muscles that were never tight are now tight...
I had PT- and basically my PC muscle is at a 3 (but she was being rather nice with her scale)  we think this is most likely due to a long drive I was forced to have due to a bad snow storm last week.

So frustrating that most normal humans were in their cars during the same storm and arent like I am right now.

I was doing fairly well for awhile holding my own.......and now this... but only worse because now both external and internal are flaring at once. Mostly one sided...but it still feels so raw- the release work usually does have this affect, but for some reason I just cant mentally deal with this right now.  I want it to leave now and be gone for good.... I want my life back.

So , close to the holidays and I feel this lousy- how will I ever sit thru dinner.

On top of it all I think I may be going yeasty again, It seems I just cannot catch a break.

I need a miracle- I need these muscles to release, they dont need to be so angry any more they really can relax- if only it were that simple.

I will pray for my Christmas miracle- and a cure for whatever this is that I have.

Im tired of being called a complicated case, or told no you are different than others that have the three amigos. Why must I be so different.

Hopefully, one day in the near future I will be out of this flare just like the others that came before it.

this post seems to be all over the place-

I guess if I have to look at a positive..... I was a tad freaked that the vulva symptoms had returned, but upon finding out the PC muscle was super tight this always usual brings the vulva burning back .....  so it is a positive that if I get that to calm down... this should resolve itself.  

I have gotten out of way worse flares- the question this time around is do I have the mental capacity to get thru this one.

Do I have the willpower to not slouch, or type to one side in bed on the not sit, stand, walk for any length of time.  Can I get myself out of this flare?


Wednesday, October 20, 2010

My Truth

Since a few with pelvic pain have posted their truths I thought I would do the same.

I just got back from a very long trip to a hormone specialist-  for the most part the three amigos behaved...I did have a ton of piriformis pain that radiated down my right leg while driving, but i recovered nicely....and was able to make a semi vacation out of it....but once back home...things really flared up.  

I had PT today and my PC muscle is super tight.. ... she couldnt get it to calm down....  this sucks.  It does explain my increased bladder symptoms, and burning vulva.

but im scared-  Im scared this will stay that way...stay flared up like it did last year at this time... im scared it is going to take that long for me to recover again.
Im beyond scared the vulva burning, intense burning is going to come back....  I cant deal with that again.

Most of all im going to admit I have no clue what direction I am going in...and although I seem so strong to so many-  Im just as lost, just as sad.  

My PT said she feels something is driving my PFD it is just a bystander...secondary to something else going on as I am not like any of her other patients.   The Dr I just saw said I have low iron and vitamin D

I secretly pray that it is just iron and viatmin D dificencies and for some reason being so difficient (he said it was severe)  is causing the PFD to react the way it does.

I mean just from sitting too much my PC muscle goes into a mega spasm.  

So, that is my truth I am clueless-  a ship lost at sea-    Say some prayers for me that this PC flare goes away.  

Wednesday, September 22, 2010

i should be doing backflips right now

I had PT today, and despite all the pain during my period  the GI appt pelvis stayed aligned.... WTF

I know that the period issues were not PF related this month- it had a different feel to it......

but I havent a clue why I stayed PT thinks it is the strenghthening I have started to do......

BUT instead of being able to celebrate I lay here in pain from today session........ she released the hipflexors...and did some very very minor work internally and relased the piriformis on both sides.

I feel like I went in there today with everything out of alignment-  I mean shouldnt i feel good right now since I went in there aligned and with hardly any symptoms?   So , now it will be in recovery mode..........which mentally is freaking draining the crap out of me........... to endure this whn I was OK to begin with.

IF I had known i was OK, i would have skipped this week.

I guess the positive is I stayed aligned........ so that is huge progress not only that but my PFD has remained at a low tone for about three weeks now........ that is good.

I just wish i wasnt having this awful deep gnawing pain.......  why do I react so differently to PT than most. 

I just hope this will calm down and I will get back to where I was today when I went into PT........ but this means tomorrow I most likely wont be out running errands , but will be stuck at home.... trying not to push things.  ugh, frustrating to say the least. 

I am really trying so hard to remain positive.......... and hopeful even that maybe one day soon I will overcome this... somehow.  

Monday, September 20, 2010

another Dr left puzzled

GI appt-
goes somewhat like this-
resident first chats with me-   during convo asks why i cant work( I am growing to ohhh soo HATE this question)  I am though wondering if possibly there is some reason they have to ask if IC, PFD and Vestibilitis arent enough to make someone disabled!!

I tell her my symptoms and she asks what caused my which I reply I didnt think anyone knew what caused which she says for some cases they do :(   For five years of dealing with this all I have gotten in speculation...... so many different theories... 

the resident leaves and then they both come back into the room.

Dr is reall friendly and I thought nice...although she did try to make a joke of something I didnt really think was all that funny really. 

I told her my symptoms and she was puzzled....... especially when I described what was going on with my stools- and the white substance that now often wraps around them.

she at first thought it was part of my colon coming off in my stool (to which I swallowed hard) her explanation made me quite ill...she explained, while drawing a diagram, that often with PFD the muscles being so tight will actually cause ulcers in the colon and cause it to slough off into the stool....   
this bit of news frustrated me too- because all these years my pelvic/uro place has never once mentioned this could be happening to me- even when i had the bad bought of constipation........  and i have to ask myself why not ...dammit.

anyway, i decided at that time due to the personality of the Dr and she was about my age, that I would tell her I actually was so fed up with Doctors not knowing what was going on with me I took a pic of this substance in my stool- so she of course was thrilled and wanted to see it.   After she saw it she was more puzzled...and her previous theory went out the window...she said it did not look like pieces of my colon,. 

She went to examine me- but had me lay on my side...and my PF muscles were not cooperating at all so I barely got an exam- ......... very frustrating to say the least.  
the scary part is she found blood, microscopic blood.... so she wants a colonoscopy to be done after I get a bunch of other tests done first.   She said possibly could be some type of colitis.   She wants me to do a gluten challenge and eat gluten for a week and then get a blood test done to see if I react.   I doubt I body never tests positive for anything I need it to test positive for........why should it start now. 

there was also mention that I had a hemoroid.........which her colleague a few months ago diagnosed as a skin tag...i told her that today and she said she would have to disagree with that dr on that.   So what the f is it...a skin tag or a hemmoroid?  guess I will need to seek out a third opinion on that one

I feel very worn out from todays appointment and just kinda down tonite.  

Last week my period tried to kill me again- and something is seriously wrong on that front as well........but who will i Dr can figure this out....they take some guesses but that is about it.   I swear i have a UTI or yeast infection- but do I risk going back to the Dr that treated me so horribly because they are the only center that can test accurately.

I remain a medical mystery.  I wouldnt mind if there was atleast some sort of drug to help with these symptoms...ugh.

Thursday, September 2, 2010

Much better day, but why

I guess I shouldnt ask why and should just be thankful for whatever reasons...I have recovered from the stress enduced flareup.  Today I woke up and could tell right away something was different.   then I went to PT and it was confirmed the PC muscle was much better and no longer real tight.... for whatever reason it calmed down....thankfully.  The IC muscle was still involved but overall tone was not so bad.   the external muscles and SI joint however are still giving me issues.   I now know that compressed feeling I get is a sure sign i need someone to 'pull my leg'    to get that joint to open up and the pelvis to be lowered.  ugh, so much maintenace.

I walked about a block on Monday.... did self PT on Tues...and then did some very mild stretching and strenghtening yesterday.   Somehow It seems I tolerated it OK.  

I really am determined to continue to stretch a muscle everyday, maybe twice a day...  and see if it makes any difference at all.......and work on the strenghtening as well.

One of these days something is going to have to work.

I still have some issues though with this burning at ovulation....  and just how deconditioned I am in general.

I see today as a positive- if even just for the day I am thankful. ..and it once again proves I can indeed get out of a horrific flare.

If only i knew why though... why the PC muscle just stopped flaring... heck I would keep doing what I am doing whatever it is that is keeping the tone down.  sigh.

Wednesday, August 18, 2010

Every PT is not created equal

I dont know what is going on with my body- why it chose the week before my PT was to be flare beyond anything I could ever remember

Im laying in bed now as I type this- trying not to slouch..... but just sad I have to lay down at all.

the PT session killed me- she uses a different technique than my PT... and even different than last summer when I saw her... IMO it seemed like she was massaging the muscles and turning her hand to do it.   At times she would press too close to the vulva... and it killed me........  her external release is much different too and while it didnt seem like she was pressing all that much - my body feels like a train hit me....  I think the movements were just to fast...and my body reacted to it horribly.

some positives is she was able to explain the internal PT more...and I think I get it now more than ever before... which if this ever calms down could be a huge blessing and worth this pain I am in right now.

Im going to pray I recover I am soooo not used to feeling like this...back to last winter and how bad I was.

She did say I will have this the rest of my life and just have to manage it...........this SUCKS!!!!     Any normal activity could flare my obterator... sitting indian style... WTH!!!   driving,  

Im even in too much pain to cry and traumeel isnt touching this pain... 
what on earth is going on.     My period is due too soon... last month I had NO pain... I wasnt in bed with it...somehow I think I might be paying for all of that now.....  this is insane.

Monday, August 16, 2010

Self PT- Epic Fail

so I tried once again to do self PT... I thought a few weeks ago I finally got the hang of it because I did not flare that much after.   At the instruction of my PT from last week to do self PT atleast once before t his weeks session since my muscles were so bad..... I DID

and today I paid for it- my muscles are very very angry at me.........I obviously have NO friggin clue how to do self PT....  I cant even get my thumb into the position of nine oclock.....  

I thought the ridge I felt at seven was a trigger point, but who the hell knows@@

cant they just offer some sort of class for this type of thing..I mean it is chronic afterall....why not show us the position our hand should be in, so we know how to do it and dont  cause more pain.

Im starting to get very overwhelmed with everything in my life...........why cant anything ever go smoothly...

I may ask the PT this week if she would let me do self PT there so she can show me how to do it......... I mean at this point so many have looked at my crotch...I could friggin careless..........i just want to learn how to do this , instead of sitting here suffering yet another nite.

this setback is bad........... I was at such a good place too before this............

I have nerve damage in my back..not sure where exactly since the neuro didnt send the interpretation to my PCP....  and didnt explain it... I could have hormonal issues........

and for some reason I cannot stretch like most stretching makes me worse.   

Thursday, August 12, 2010

Huge Setback- I hate you obetrator internus

Really- why where we born with a muscle that can inflict so much agony-  WHY???

I was going along  holding my own as my PT says...for quite awhile... basically just the trigger points 'bands' at 7 and 5 o'clock at the ilia coxygeous... now that is a muscle I can deal with.

I have been majorly stressed and due to circumstances out of my control will probably be stressed for months to come (basically my home has severe storm damage, and my homeowners is fighting everything) 

back to the muscles-  I am in ovulation or was, so I just thought I was flaring from that, even though I had more bladder symptoms and bowel symptoms than normal.   I never thought the obterator would be flared... I thought that was a thing of the past, and because I didnt know to look out for it flaring... I am now stuck like this.

I cried some tonite-  I dont know how I could go from the spot I was in- just about ready to add back in some strengthening , and mild stretching and now WHAMO...back to this flaring

and anyone reading this that has this muscle SUCKS.........   this muscle is the one that causes me so much pain during me period (anyone know why that is???)

My PT worked on it and it raidiated pain all the way up to my opposite hip... I felt like I would pass out it was that intense.

Last month during my period I hardly had any pain at all... I htought I had reached a huge turning point and now I have this........... 

So, now with not being able, to sit , stand or walk without pain... I am so screwed as I have all this home crap I have to take care of and I just physically cant.

I guess everything happens for a reason-  I just cant figure this one out.  thru tears I write this post- hoping one day I can look back on it and say- yea I did make it thru that flare.........

Life really just sucks right now.   I could just crawl in a ball and stay that way for a very long time. 

anyone out there know why the obterator internus would flare?  Does anyone activity cause it to get so beyond tight??  

ALso last session it took a long time for my hip flexor to calm down and I do wonder if this could be a contributing factor. 

Monday, June 21, 2010

A new cream- and Mixed feelings on recent appt.

I had an appt with the Vulva specialist I had been waiting to see for about three months now.  

I swear I have the worst F%$@@! Luck with Doctors- today was no different.  Dr was running behind so his assistant did the intake.  This was very frustrating because I really felt like there were parts of my history that might have made some sense out of all of this, but most importantly key facts about my current symptoms were missed.   I was sidetracked by the assistances sharp replies to me and asking me to go way back to the very beginning...we never did get to talking about my current symptoms.

I also felt like I was viewed as a spy of sorts since I had been a patient of another Dr for so many years...someone in the same city... (Kinda got the why are you here to see us vibe)  was even asked what my plans were - to stay with them or to return to the other practice because while there was an overlap in treatment protocols- they did differ in some aspects.    I dunno I felt like an outsider looking in. 

  Overall I would give the appt a C.   I mean if you wait three months to see the Dr you want to spend all the time with the DOCTOR. period. not some assistant.

Positives-  I was able to tolerate a speculum- with hardly any discomfort
q-tip test didnt cause that much burning...
I have come such a long way since the start of all of this ... and for that I am proud of myself= proud for never giving up

He dx me with Vestibilitis- same as the other practitioner.   

I tried asking some questions after my appointment but was cut short with a 'we want you to try this have had this for a few years now we cant possibly figure out all the details in your history'   I wasnt asking for that- just trying to grasp why he felt this cream would be good for treating the symptoms that I currently have.

The answer I got to that question left a lot to be desired- basically something that was presented at a conference a few years ago. ...and he trusted those Dr... couldnt explain why a muscle relaxer applied to the vulva works though...  I guess I will call one of the pharmacists and ask them. 

I have tried a few creams- one cream that he doesnt feel works for patients DID indeed give me the most relief-  so see this is why I had questions- questions that had no answers.  If I saw results with that cream and others didnt....why would this cream Rx today help me???  

sigh- the reality is  no one knows how to treat the three amigos... and I finally had a Dr today admit that to me. 

I liked that about him he was honest, gentle, and while rushed- I guess he tried.     

My PFD is flaring now-  my symptoms seem to be more PFD related..than anything else...   he of course doesnt treat the PFD aspect to this. I will continue with the PT paying out of pocket.

I hate getting my hopes up and then have things not turn out like I had hoped - like today.    Tired of all these creams.... tired of being told this gushing discharge at ovulation is normal... and I just have more than most women...   no explanation for why it burns.  

Im trying my best to just live with what symptoms I wake up with everyday... but it is so difficult trying not to figure out why.... why.

Saturday, June 12, 2010

I had a good day

I woke up this morning (saturday) and noticed I didnt have any stiffness or tight muscles at all.  I thought perhaps it was the fact that my nite time meds were still in my system....but as the day went on the tightness did not return.  I went out  veery briefly to a store to pick up a card felt great to walk down a few aisles feeling like a normal human... I didnt know I had a pelvic floor, bladder or vulva for that matter.  Everything felt very relaxed and odd feeling.  My muscles are so used to being tight and tense that it felt strange to me...but normal all the same.

this brief moment of hope came crashing down when I returned home- it seems something triggered my muscles to spasm again- Im not sure what or why or how...but isnt that how these symptoms go anyway? 

the weather is changing again- storm is coming and humidity is high- perhaps that is why my muscles are now tighter.

The one thing I do know is that I am thankful for the glimpse of what it feels like to be normal again.

Sure I wish It would last longer- and yes I do wonder why on earth it snapped back to the way it always is... for right now I dont have the answers...but hoping one day soon I will find them...and the glimpse I felt today will be my new new reality.

Thursday, June 3, 2010

Another Horrific Flare from the stupid Crystal Wand

I had been doing fairly OK, but started getting some burning a few days after my last PT session.   I couldnt figure out where the burning was coming from and thought perhaps it was my bladder (I had eaten some berries) and thought maybe a food flare???   but it didnt seem to go away...and then it started to feel more like a vulvadyania flare up.... (which I havent had in quite sometime) 

Stupid me decides that often my vulva flares are from the tight PF muslces and uses the crystal wand.   Well I could barely sleep at all last nite, could barely stand today, and forget any sitting.    Even my sits bones hurt on both sides.

How on earth could me using this wand cause all of this??   My vulva feels like I have severe rug burn

and if that isnt bad enough, I have some sort of discharge... infection??  I have no clue..   I thought maybe even a UTI... anything is possible at this point with this pain.     Of course using the crystal wand has made everything misearble.

and the worst timing as the AUA conference is taking place and my Dr and PT are not available... so lovely  ...NOT.

So,  I am trying not to panic too much.... I know this flare will calm down once I get to PT late next week.    Until then I wont do anything to upset things...

I just wish I could learn how to do self PT without flaring this badly everytime.     and the sad thing is I will be like this until my PT corrects it... 

Im going to pray this as not given me a huge setback... and the muscles dont learn to stay in this tight state they are in...

Tuesday, May 11, 2010

How do I answer this question

While I was out getting groceries today - someone who works at the store I frequent and often makes small talk asked...'so do you work, go to school, what do you do? "    Just coming from a pretty painful PT appt.... the only thing I could think of to say was ' I am between jobs'  to which he gave me some just relax...and let my mind unwind... his advice was sincere........ if only I was really between jobs.  

technically It could be viewed as between jobs- I mean I am between Doctors right now...   maybe I could have answered with ' medical researcher'   or thought of something funny to say......possibly at a different time, when I wasnt burning away...maybe I would have said something to make him laugh.... 

this is a struggle for me though and I thnk about it often- how on earth will I date again with this mess- my last bf had health issues of his own (he could relate to me) I didnt have to explain....  
How on earth can this be explained to someone that lives a normal life- I dont think that it can.

I could see it now-   a date- well I cant eat gluten, oh no, cant go for coffee , oh that flares my bladder,   no, cant do that I cant walk that far.......oh this here...this is the cushion I have to sit on , if not I flare. 

I dont know if it is possible to date a normal man.   Heck I cant even make small talk without lying.
maybe i will just avoid interacting with him in the future....

Burning ...burning.

When I used to get the vulva injections I really had less I just have to learn to deal with it (somehow).... since I am not really comfortable returning to the practitioners I really do not trust.

Im worn out, tired of trying to figure all this out-  where is the burning coming from.

I had PT today-  just from going out to do a normal activity so many take for granted I am in a pretty bad flare...the burning has increased...plan is to see if the burning possible cause could be the very very tight PF muscles.   I have been more active the last three weeks with Dr appts...the driving, sitting, walking, etc has impacted the pelvis... 

Sometimes I envy those in the motorized scooters-  I often think it might just be easier for me to figure out how to get one...I could just sit and not have to walk or stand ....  

No one could even imagine what I go thru- the severe muscle tightness just from walking....

it seems to me that although my bladder (IC) seems to be better(dont have to stop as much to pee or use port o potties etc)  the muscle tightness has gotten worse(or I notice it more...possibly?)

Im tired of putting on that happy face- tired of pushing thru daily activities...and most of all sick and tired of this burning.   It was under control... dammit!! 

I long for the days last summer that I could walk down my street a few blocks and back.... mostly I just wish some Dr could figure out a treatment plan that could help some of this.......
I didnt go to med school and I am beyond sick of playing Dr.

Tuesday, May 4, 2010

Self PT

ugggghhhh-- today, I was finally recovering...PFD felt a bit better, but my PT wanted me to try the Crystal wand again and do self PT between sessions. So I tried it again, and now I am worse than I was before.... hurt more to sit tonite..(more in the piriformis area) which makes no sense to me at all. Urine stream is affected too.. however my vulvodynia did not flare this one positive thing ...

I really fail miserably at self PT... it got so bad when using my thumbs that my PT told me to stop doing it. My muscles are generally tighter than the average person with this complicates everything...

all I know is I was feeling better before I tried self PT...and really hope I wake up tomorrow feeling like I was earlier today before the Self PT .......

It is sort of a damn if you do damn if you dont place I am in... I did the PT because I needed to try it again...and I wanted to prevent the muscles from tightening or getting worse with my upcoming appointments... but now seems it was made way worse.

PT has ended for me...unless I can pay out of pocket...

I also did a pelvis correction today too- and for whatever reason the last few times even that has made my muscles tighter. (Maybe it didnt need to be done, but how on earth can you tell .... I rarely can tell if my pelvis is off...

praying tomorrow I wake up and things have calmed down... this is beyond frustrating.

Thursday, April 29, 2010

Kudos to my PT

My PT always seems to know just the right words to say... she is calm and very supportive. She 'gets' that I am not the average '3 amigo' patient. My body and muscles react much differently than the average patient... just a simple stretch will tighten my PF muscles. I can be flared from PT for a week after... walking, sitting, standing, driving makes my muscles super tight.

An example- I am still recovering from the exam the Uro did in the first week of the month at the appt(that I chose not post about her on the blog)

What my PT understands I just wish my treating NP could understand. I was told I was non compliant at the appt I chose not to post I requested to have my file sent to me and read it Np states patient refused exam , patient refused TP injections (when what in reality was happenign was my PT was advising me not to get the internal exam because it was setting me back way to far in treatment with WEEKS...and the TP injections set me back two MONTHS over the summer... I thought I would never ever recover it was THAT to see in writing that it is how my NP viewed it was upsetting. and they just dont write refused...they underline it three times and write it in it is some sort of offense to them.

It isnt my fault my body reacts this way... I try, but if I was going to get vulva injections every two weeks and it was flaring me each visit when she did the internal exam... why couldnt she understand this... at one point the week of the injections I was having three internal exams that week. Two PT visits and one with the NP. and why not fully document what I was telling her ... the reason why I didnt want the exam. again shows how she does not get my '3 amigo presentation' Also, If she had made it clear that internal exams are mandatory then I could have decided not to get the injections as often.
Nothing like thinking all is OK when it is not.

At the appt I chose not to write about a lot happenend...I was accused of things that I saw today were never on my chart!!! Yelled at etc..for things that never were written.

After seeing my file-(which by the way is missing a lot , not sure who they had copy it but it is far from complete) it is clear that the team I put my trust in, really never did understand my condition. and sadly I dont think they ever will.

So, I am thankful that my PT gets really gets it and I know she must get frustrated that simple things flare me... but we have tried to work around it and do the best that we can. She has never given up on me. and never wrote that I refused certain treatments..etc.

I have a ton to think about- can I possibly return to this i even want to? the vulva injections are way past due for me and I do think I need them NOW...but can I go back into that office...knowing what I know now...I dont know that I can.

I think I am sort of being propelled in a new treatment direction by these latest events... I need some time to reflect and a clear mind to reach a decision that makes the most sense to me.

Until then, I am going to recover from PT and pray my muscles return to the tone they were at last week.

Thursday, April 15, 2010

I dont know why they sent you here

I dont know why they did either.

I had an appt with a specialist..and this is just one thing that was said to me.

He was very very nice and listened... but couldnt offer me anything more than what the Dr referring me to him has... he was a bit puzzled as to the reasons why I was sent to see him. This is a bit frustrating because the drive to the office and home caused me a huge PFD flare up...another setback.. and bedbound yet again. PFD flares are only relieved by PT. Frustrating, because I did sort of hope, maybe there was a slim change he would be able to offer something that could help me.

I guess it is good that I went to the appt- now I know...otherwise I would have always wondered..well what if..

this is about the third time a Dr has come right out and said 'I dont know why they sent you here'

Sometimes it is tough not to give up hope.. when it seems even the Dr treating you dont really know all that much..or if they do they arent all in agreement on the cause or the treatment.

I know what has helped me...I know what hasnt. I would hope that to some Dr out there this will mean something.

A fork in the road

I have thought about whether to post about my recent appointment- i decided I wasnt going to let that negative energy onto my blog- so I am leaving out the details.

I did think it warranted me mentioning however, as it is affecting my current treatment..and I am stuck in ' a fork in the road'

my consult appt went horribly wrong ..for reasons I am still not sure of- what is clear is I was treated very unprofessionally on all levels.

the exam was the worst I have ever had.. Pelvic exam wise. I was accused of some things.. that I still am not sure why I was accused of them... and my treatment was stopped. Something that was helping- I was told the Dr did not feel they were necessary and I need to adapt to change. No explanations given...especially since they were working.

I have regrouped- I have Dr appt scheduled with different Doctors... but in the meantime I am in a lot more pain. Im frustrated that my PFD is worse due to exam and I am still recovering a week later. The way my PFD reacts is- the muscles will stay tight..and the only thing to get me out of a flare is PT. That being said even with PT last week, my muscles are still not happy from the pelvic exam last week...
I dont know what the future holds..but I refuse to give up or let this experience affect me negatively.

I will get well again that I do know.

Sunday, April 11, 2010

Brief history

I was diagnosed with IC, and VVS about 3 years ago... It started after a very very bad bacterial infection... and then the self treatment with monistat... The infection because of my pain levels went undiagnosed.. I was voiding 24 times prior to lunch. By the time I finally got to an office that knew about the 3 Amigos... I was in pretty bad shape.

I couldn tolerate an exam- I mean not even a qtip to be inserted... ( no matter how I tried I just couldnt tolerate it) I tried everything... I tried relaxation techniques... nothing worked. I had a yeast infection for a year straight.

Eventially I quit going to the office- they were frustrated with me and I was frustrated with my body. I decided to try herbal protocols in hopes that I would find relief that way. I found some.. I also treated for Hypothyroid and that helped some as well.

about a year after I left I made my return- this time ready to try anything that I could... the yeast wasnt an issue and I was ready. I still could not tolerate an exam...but could tolerate a qtip.. (progress) Then by luck one of the muscle relaxers prescribed allowed for me to have an internal exam...well my Pelvic Floor was very tight... and I was referred to PT.

My PT literally gave me my life back- I was able to be more mobile, tolerate exams.. all after 4 internal sessions of PT... (a true miracle) My PT actually 'got it " she could feel how tight my muscles were... I was the highest tone possible.

After I went to PT for a few months- It was time to try capsaisin(the wonder cream) I saw improvement very very quickly with it... probably within a weeks time... I used to joke and say I wanted to marry it.. I loved it so much.

PT ended... and although I was more muscles were still very a brick wall. I took a break from PT for a loooong time. In that time I tried Trigger Point injections into the muscles - what I had thought was my bladder and urethra was the was the best decision my practitioner and I made...

They would flare me... but I saw improvement...the flare would vary each time... I was determined to not give up though...and I went forward.

The injections werent working any longer I seemed to have hit a back to PT I went- and wow this time it was muscles were better... not great but better. be continued.