Tuesday, June 2, 2009

I Think I Finally Did Something Right

I called the urologist today at 12:22 p.m.  They asked me if I could be there at 1:15 p.m.

Not some podunk urologist either.  No, the Cleveland Clinic, where they have you fill out your history on Speak & Spells

that have nonsensical screens like this

CAN WE PLEASE JUST DECIDE WHICH WAY THE KEYPAD GOES?  Phones and calculators disagree and now the Cleveland Clinic picks a third way?  So I was born 1800 years after myself?

Anyway, they gave the Dude a beeper:

Okay, it was a tracking device so they could "locate me," not a beeper.  Gotta quote The Big Lebowski whenever you can.  (Yes, that is my Dumb & Dumber shirt underneath my sweater.)

My gynie is of a branch of the Cleveland Clinic, and the vulvodynia specialist I went to last August is at the main campus, where I went today.  But this time I went to the kidney & urology part, and omg, I think I did good.

I saw Dr. Sandip Vasavada.  He talked through my history and symptoms with me and then I got in the stirrups.  He swabbed my vagina because, as he explained, bacteria inhabiting the urethra are usually also present in the vagina.  I was HELLA HAPPY not to have to get a urethral culture -- I got one at the appointment where I got diagnosed with vulvodynia, and it was like demons shooting out of there.

Then he stuck only the top of the speculum in and did some tests with his fingers.  He pulled down on my vagina, towards my anus, which was super-painful as usual, a classic vulvodynia symptom.  Then he poked here and there and asked if I was further pained, but I couldn't really tell where he was poking because the other pain -- vestibule and urethra -- was so overwhelming.

Then we were done, and I was relieved.  I was tearing up during the exam.  I usually retain my composure even for my annual, but that was just too much activity.  And of course I'm still feeling god-awful down there.

After I got dressed, the doc told me that my urethra feels "spongey," which is typical of urethritis.  He said when he poked my bladder itself -- through my vaginal wall -- I didn't experience increased pain, which points away from interstitial cystitis.  OH YES!  He said it's possible I have IC but that it really seems to be contained to my urethra -- and therefore -- get ready for it -- ready? -- it's likely BACTERIAL.

So he's culturing for abnormal bacteria, and we'll know in a few days.

He said that empirically, just from my exam, he'd feel comfortable treating me for urethritis, but that we might as well wait for the culture to come back.

I know, right?  Bacteria.  Like I asked every single doctor up to and including my vulvodynia diagnosis -- "Could it be some bacteria you don't usually test for?  COULD IT BE SOME BACTERIA YOU DON'T USUALLY TEST FOR?"  Egad.  Two and a half years later...

Of course, no confirmation yet, but even if the test comes back negative, I am SO HAPPY to be in good hands, FINALLY!  A quick list of the reassuring parts:
  • He said my pelvic-floor muscles seem to be in good shape.  HE CARED & CARED TO NOTICE & TELL ME!
  • He said usually with urethritis, antibiotics take away all the pain, but that if I have residual pain issues (or have developed vulvodynia separately) I can see a pelvic-floor therapist and listed a few.  HE CARED AGAIN!
  • He said that if the test comes back negative, we'll probably have to go into my bladder with a little tiny camera.  (YEOWCH.)  He says an MRI is possible but probably won't be necessary because I don't seem to have abnormal tissue anywhere down there.  HE CARED AGAIN & USED SCIENCE!
  • He let me talk back to him intelligently without being shocked that I might know what I'm talking about after two and a half years living and studying a disease.  HE CARED AGAIN & RESPECTED ME!
Holy fucking shit.  Thank you Dr. Vasavada.  I FINALLY FEEL LIKE I'M IN GOOD HANDS.

Yeah, it makes me a little insane that my....974 days of pain could be due to bacteria that everyone (including another urologist) refused to believe in.  But.  Would I trade in this experience?  Uhm, hells no.  See other blog posts.  (Unless it's messed with my half-a-babies.  That grosses me out.)  (NO, not pregnant with multiples.  Half-a-babies = eggs.)

Then, driving away, I asked myself if I would trade in the experience if it lasted for years and years or even until a decades-away death.  And I still don't have an answer for that.  I can't imagine living with this pain interminably.  I think that's why I've been losing my cool lately -- because it's seemed more and more likely that there would be no resolution, never anyone who cared enough to figure it out.



Every time I've seen a new doctor or read about a different treatment, I've never known where the road would go.  It's happened countless times, and it's the same case here.  But knowing that I found someone -- a whole department, it seems -- who cares enough to stick with this until it's resolved -- cured or not -- makes me feel like DANCING ON ROOFTOPS.

I was always jealous of Dick van Dyke.


You know it's on my MP3 player.


  1. What a satisfying appointment- I totally get it! It's sad that it's so unusual, but I'm glad it happened for you! How great too, that you got in so quickly. It was meant to be! Jancey

  2. Yes! I am so happy for you! This is making me so happy - finally, you are getting treated right. This guy sounds like a real winner. It is very rare that you especially have that last part, about being able to converse in medical terms and ideas freely without upsetting the apparently fragile self-esteem of a medical professional. Best of continued luck, I will be thinking good thoughts for you about the results.

  3. this is fantastic!
    i swear, doctors don't read the internets and the blogs like patients do. maybe if they did they'd have larger spectrum tests.

  4. Yay! It's been a good week for good doctors, and I'm so glad you found one! What a huge relief!

  5. That is great news!!! I am so excited! I hope you get your answers & relief!

  6. This is one of those weird situations where I think it's appropriate to say, "Well I hope you have an infection." And I mean that in the best possible way.

    Because if that's the case hopefully it will be easy to treat. I hope he tests for weird strains of bacteria besides the usual run of the mill ones.

    I *think* I vaguely recall my sister having to have a camera inserted up into her urethra too, many years ago... she's still standing & she's fine today but if memory serves me well that was not an easy thing to deal with at the time.

  7. K, thanks. I wish ALL of us had an infection...I think in The Camera My Mother Gave Me Susanna Kaysen writes that her doctor thinks eventually we'll discover that all (most, some) vulvodynia is due to infection. That would be GREAT -- but maddening. "Mystery" my ass.

    Sigh: to the future. May we figure it out someday.

  8. Can you imagine taking some pills and feeling all better? Le sigh. Stupid feminine mystery diseases.

    I hope this works out for you!! I know how amazing it is to finally find a doctor who listens and takes the time to *really* treat you.

  9. AK, no, I can't imagine it. And it's really freaking me out, to be honest. For so many reasons. No word from the doctor yet...weekends suck! But thanks! :)

  10. I'm really pleased that your appointment with the urologist went really well - it's so unusual for that to actually happen. I had my first appointment with a urologist on Tuesday and I hated it. He didn't listen to anything I said and just decided that I needed a blood test, an ultrasound and a cystoscopy and then to go back and see him. Blood test and ultrasound I can deal with. Cystoscopy I am actually making myself depressed over. They want to put a camera inside me and he hasn't even told me why. I'm going to need to relax my pelvic muscles and he has never heard of volvodynia... I don't want anyone that doesn't know what that's like touching me down there - he won't understand that my muscles have a mind of there own and do not want to play. I hate this right now.

    I really hope you get your answers soon - I know how hard it is to be waiting on results. I'm crossing my fingers for you to find out!

  11. Woops. I mean vulvodynia... not sure how the car got in there.

  12. Stef, that sucks! I hate when doctors don't seem to commit any special thought to your case...and when they don't give you reasons for what they're doing, it's just so insulting. I'd be scared of the cystoscopy too -- and wondering why the hell it's necessary. I hope that, despite all the randomness and confusion, the tests actually yield results that are helpful for your case. I'll be thinking of you!

    And thanks for thinking of me! Waiting, waiting, waiting... :)

  13. Thank you, that's very kind. I got myself really worked up last night and, after talking it over a lot with my partner, decided that I don't want to go through with the cystoscopy. The doctors have given me no reason to believe that it's really necessary and I'm just going to make myself ill worrying about it. I'm pretty sure they're not going to come up with anything even after all this testing and I do not want to be a guinea pig!

    I hope your waiting doesn't continue for too long, I keep looking back to see if you've posted the results yet and sighing for you every time!

  14. Thanks Stef. I'm trying the patience thing...not really working, so then I rotate to distractions, then to insanity, etc., etc. But overall, I know the waiting HAS to end at some point, and that's a good thing.

    I won't say I'm glad you're opting out of the cystoscopy 'cause that sounds weird. But I'm glad you were able to make a decision about it that you feel good about. You shouldn't have to do anything you're uncomfortable with! Good luck with all your tests -- I really hope they help you figure out what's going on.

  15. So I changed my mind about the cystoscopy after getting over the fear and booked the appointment today. July 6th. I'll let you know if I find out anything!

    I take it you're still waiting?

  16. Stef, I hope it goes well! I'm wondering if I'm headed to one of those...yes, still waiting. Going to give it a couple more days and then call them. Hope they haven't forgotten about me :'( :)