cycling symptoms and doc testing

[Friedbrain]

I'm feeling so frustrated, and at the point of almost accepting I'm simply going to go crazy over this.  For almost all of my adult life, I've had cycling symptoms across each month.  It makes sense that it's somehow related to female hormones in some way, and I've just kind of accepted it.  If Sjogren's (instead of MS) is the cause of the symptoms that I *do* experience, as recently claimed by a new neuro, then fine.  I accept that, too, but still need to know how to deal with them so that IF/WHEN I experience a bad flare (that typically lasts as long as the "hormonal window", so between a few to ten days, for example) I will know what to do (other than self-catheterize, thankyouverymuch).

So I went to a "neuro-urologist" today, and he kept asking me if I had urine leakage.  NO.  I don't.  And he barely listened to what I do experience ten days a month, which is lack of bladder sensation (worse at night) and difficulty urinating (worse at night).  Even though I am FINE right now (because my period is due), he insisted on an internal exam and declared that I have spastic pelvic floor.  He then insisted I get the urodynamic study and said that it was irrelevant whether I am experiencing symptoms now or at the time of the testing. 

I DON'T GET THIS.  Sometimes I am fine, and sometimes I am not.  Why do docs insist that seeing/testing me when I am fine will help them diagnose my lack of bladder sensation and function?  For some reason, all my doc appts (which are almost impossible to schedule around here, so little choice) end up right before (or even during) my period, when I am fine.  The only time I have been seen in the midst of severe problems was when I was able to get in to my great physical therapist the next day, and she was able to observe that my pelvic floor muscles were NUMB (opposite of what the TWO uro/pelvic docs doing internal exams found because I was symptomatically fine when they did the exams). 

I guess I'll give up fighting trying to get a doc to understand that my symptoms cycle?  The only one who listens to me is the PT.  Thoughts? 

[Momedic]

All I know is that it seems we have to "train" these docs to this disease process!!  Very frustrating, regardless of the issue the individual is dealing with... The doc should be up on this disease process. It is no longer a "new disease"!!  They should get it!!

[Styx]

I've been there. I had a hypertrophic inferior turbinate that caused severe headaches about every 3 hours in sync with the nasal cycle. Of course, they always seemed to examine me during the 3 hours I was fine.

You could try setting up appointments with different doctors throughout the month, and then cancel them if you are asymptomatic.

Styx

[Friedbrain]

HA!  I love that advice, Styx, thank you.  No, I mean, truly, I do.  I will do that.  If I'm forced to play ball in the current system that's so inflexible, then I do what I have to do.  Thanks, Momedic, too, for just saying you understand.

This doc supposedly understands MS-related bladder problems, too, so he SHOULD get the cycling thing.  He wants data from the urodynamic test before he really even talks any further to me.  My PT said she had a convo with an older doctor who said that young docs don't know how to do real exams anymore, only look at test data instead of thinking through things.  If this test wasn't so invasive and expensive, then I guess it wouldn't be such a big deal to get it done "healthy" and then have Doc acknowledge that I am physiologically normal when I am symptomatically normal and that I need to get it tested when I'm Not healthy....(doh).  Between these uros doing springing gyn exams on me, invasive weekly PT, and a horribly traumatic visit to learn how to self-catheterize, I'm feeling extremely violated right now.  Not in a good place emotionally about all of this, which is the largest hurdle, frankly.  Oh, and did I mention *angry* that I have a problem down there that's causing me to have to go through all this? 

(On a related note....I just went through an expensive HIDA for a mild but recurrent probably-gallbladder discomfort that showed my gallbladder is fine.  I went in to see a doc to double-check the necessity of the test because I explained that it's MILD and intermittant.  Back-up doc was insistent that I needed it done.  I said ok.  When I looked at paperwork after the test, it said I was experiencing SEVERE abdominal pain, which was a total lie.  I know I don't fit into nice neat diagnostic boxes for doctors, but please don't exaggerate or alter my symptoms to match your boxes!)

[Styx]

  If I'm forced to play ball in the current system that's so inflexible, then I do what I have to do.

That's exactly the attitude I have at this point too Good luck!

Styx

[Tivia]

  If I'm forced to play ball in the current system that's so inflexible, then I do what I have to do.

That's exactly the attitude I have at this point too Good luck!

Styx

same lol, I am so sick of doctors already I cant see a lifetime of this stuff ahead of me I am ready to just stop. They keep sending me to new doctors when a new symptom pops up. I am like ..look you know this is prob sjogrens causing it, why send me to another doctor for freaks sake? And no one talks to the other ones, so all the doctors keep miming over and over the same stuff the previous ones did. When all I want to know is, am I progressing fast, can you treat this,  am I going to drive off a bridge because I am so frustrated and overwhelmed lol