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.  

i should be doing backflips right now

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

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 it...as if IC, PFD and Vestibilitis arent enough to make someone disabled!!

I tell her my symptoms and she asks what caused my IC...to which I reply I didnt think anyone knew what caused IC..to 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 will...my 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 see........no 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.

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.

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 off...to 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.

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 humans...as stretching makes me worse.   

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 flare...it 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.