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...