Thursday, July 2, 2009

Vulvodynia Isn't an Answer

I'm at the point where I'm like, whatever it is, just figure it out and tell me. Cancer? Fine. MS? Fine. Scary horrible other disease? Fine. Just figure it out and tell me what it is, because this "diagnosis of exclusion" is driving me crazy. Vulvodynia isn't an answer.

YOU KNOW eventually they're going to find that 75% of vulvodynia cases are due to __________. Given that vulvodynia is so common (15+% of us), I'm betting on something infectious, like a weird strain of bacteria or yeast or other fungus. If so many of us suffer from it, and if our symptoms corroborate, it seems unlikely that we'd all have some genetic or physical abnormality. 15% is no longer rare.

My vet friend told me I should be biopsied -- my skin down there. Apparently she does skin biopsies (including on a dog's vajayjay! Poor doggie but guess what -- she diagnosed its problem) to determine a whole range of things, from infections to autoimmune disorders. There are skin pathologists who study that stuff specifically. I mean, fuck! Why haven't I been biopsied? Why haven't YOU? WHAT THE FUCK?

So when I go in for my cystoscopy I'm going to ask the doc about that. Hells yeah, snip a bit of my V if ----- if, all else aside, we RULE OUT a skin problem. Because most of my pain seems to be external, and why are you crawling up my urethra with that thing again?

OMFG. Just. answer. the. question. already.

P.S. Here's some more Ace of Base. Shut up, you love it.


  1. So. I agree with the whole biopsy thing. It's actually been bothering me as well.
    And Ace of Base makes me smile inside and feel all...nineties. Ha.

    Um. I lost my train of thought...

  2. LOL :)

    I'll let you know what my doc says...and if he doesn't do it I'll be asking my gynie at my yearly in a few weeks.

  3. I had a biopsy and it doesn't necessarily give you any more information.The sample showed that my skin down there was inflamed. My doctors already knew that before it was done!
    I think that the vulvodynia is some sort of autoimmune response. My vulvodynia started after I had a yeast infection...the yeast infection went away, but the inflammation didn't. Somehow my body's immune system forgot to shut off the inflammation when the infection left.
    Having said that, we can't give up and must keep trying to find a way to get better and/or cope with it.

  4. Yeah, whenever I've read about a vulvodynia biopsy, it's only been "the biopsy didn't show anything." But I think that's a reporting bias -- there HAVE to be cases where the biopsy shows something, but then those cases don't remain "vulvodynia"...

    Like I mentioned, as with anything, a biopsy could rule something OUT. Really, the cystoscopy is unlikely to reveal physical signs of interstitial cystitis, so it's more of a ruling-out thing too.

    I'm sorry you're in pain and I hope someday you get an answer!

  5. I got a phonecall from the hospital on Friday to say that my cystoscopy has been cancelled on Monday. I now have to wait until 20th July. Still driving myself insane with worrying about it. From what I've read, a cystoscopy can show up physical signs of interstitial cystitis. That's normally how it's diagnosed - they can see inflammation of the lining and apparently various other factors. It also just tells them if your bladder is healthy.

    I had my ultrasound and xray on wednesday - nothing on the ultrasound and I don't get the results of the xray yet. I'm really starting to look into nutrition and how it's related to our physical health. I'm much better with the IBS and cystitis since I discovered I was lactose intolerant. Have you ever had any tests for intolerances?

  6. Stef, we may be having our cystoscopies on the same day...I have to reschedule because I got scheduled at work next Monday.

    I've read that cystoscopy isn't a reliable diagnosis of IC. Much like vulvodynia, it's more of a symptoms thing. And I just checked this out at -- says usually they do a questionnaire. But I guess my doc has his reasons. ?

    I've only had a blood test for Celiac and it came back negative. But I know for sure dairy messes with me, and gluten too, and eliminating those two makes me feel better -- definitely helps my digestion and helps my crotch somewhat. Evil dairy! I'm drinking some chai with hemp milk right now instead :)

  7. That would be very weird if it is the same day. I'm still feeling really worked up about it and I know it's making everything else feel worse and more stressful. I just hope they're doing it for an actual purpose and can give me an answer at the end of it. (and also hoping that the answer isn't: you have cancer).

    The link you gave is pretty helpful too. I'm not really sure that I have IC... I don't really know what it is! I hope that we both get some answers that help though.