Monday, July 13, 2009


The cystoscopy was hell. They put lidocaine in my urethra but it was still unbelievably painful. I was crying and thrashing. The doctor said, "here's the important part, take a look" -- as if I could think to turn my head and look at the screen.

And it showed nothing.

I have "inflammatory polyps" in my urethra, but apparently they are pretty common. They used to cauterize them but they don't anymore because it doesn't treat anything.

And he doesn't think I have interstitial cystitis.

So then I had to pull options out of the doctor. He had this look on his face like we've done all we can do. What about another kind of infection? What about doing a biopsy? Well, we don't have the instruments/people to do that, sorry. And he's "good friends" with that awesome vulvodynia specialist I love.

Doctors seem to run out of juice by the second visit.

So I'm on hold with the dermatology department. He referred me to a woman who's leaving the Clinic but who is apparently a sleuth. Not many dermtologists will do biopsies down there, but maybe she can tell me which one of her colleagues will.

I will apply the scientific method myself. I'll get a biopsy. I'll see an allergist. I'll get a colonoscopy, or something. I just want to die except that I have this mystery to solve. Without the mystery I wouldn't want to die. Well, without the pain. If the pain turns out to be a dead-end mystery, I'll still want to die.

I'm 29. I can't have sex, I don't date, I have to fight to enjoy the seconds of my life. I'm miserable. I should be on pain meds, I know, because I'm getting extremely depressed. I can't eat well enough to reduce the pain because I'm so miserable. I want to run away or break windows or go naked everywhere. I want to lie in a field until my body starts to rot. I want to lie in the sun until I get skin cancer so no one can blame my death on me. But -- at least I have the mystery. It's keeping me alive.


  1. Can you travel to see a specialist for this? Or try physio, like one of your docs suggested? Because honestly, the only way you can even come close to solving the "mystery" is by seeing people who know what they're doing. My motto in life is, "When you put up with crap, you get crap". I live in a country with a crappy socialized medicine system, so I've dealt with enough crap. It is when I traveled out of country and saw an expert that I was actually informed as to the specifics of my vulvodynia situation. I even think I know what the main causes/contributors are (although not all cases are as cut and dried).

    Long story short: don't accept crap doctors' messages anymore. Yes, I know- easier said than done.


  2. Esther,

    I am so sorry. You don't know how badly I wish that I could do something to help you.

    Doctors really irritate me. I am so sorry that this one is just like the others. I hope the derm pans out.

    Like the other poster asked, have you looked at doctors in other cities? I know travelling isn't cheap, but something has to give.

    ((((GENTLE HUGS))))

    Love ya!


  3. Oh- just thought I'd add something that may be available to you locally. You're in Cleveland, right? Have you looked into a PT named Tom Ockler who practices in Willoughby, Ohio (not far from Cleveland)? He is a PT who uses non-traditional techniques to help pelvic dysfunction. His assistant Sherry (a licensed massage therapist) used to have vulvodynia until she stumbled upon Tom and his techniques. She is virtually pain-free now, and from what I hear, is extremely passionate about helping other women to escape this hell. Tom's website is: I'd advise calling there and speaking to Sherry. Although there are no guarantees, she and Tom may be able to help you.

    Good Luck,

  4. I would second the physical therapy, if you're up for it...

    If there's really no infection & no other route... *maybe* *possibly* it will help. It might.

    The "Heal Pelvic Pain" by Amy Stein book is only $12...

    I have no idea if it would work for you but the book talked about PT being a help for IC, IBS, and vulvodynia. Maybe. Possibly. I can never guarantee.

  5. I've been thinking about you and hoping that the cystoscopy went well. I'm so sorry that it was so awful.

    If you still have burning try pyridium. It makes your pee bring orange, but it can help neutralize the area.

    I wish I could offer more advice than just that. You have my empathy and support. Let me know if there's anything I can do.

  6. Ugh, that sucks so much. I've kind of given up on finding out what's actually going on with me. Now it's all about trying to mitigate my misery on any given day. The only thing that's actually helped me is PT and (to a MUCH lesser degree) drugs. I looked up some people, and it appears there is a physical therapist in Cleveland.

    Might be worth a shot?

  7. I'm so sorry your cystoscopy didn't go well. Doctors are useless. I read the post last night, which wasn't a fantastic idea!

    I had my cystoscopy this morning. I was expecting the worst and panicked quite a lot. I feel sorry for the nurses really who had to look after me. I didn't find it as bad as I thought it was going to be. It hurt a little to start with but then I couldn't feel it until he'd filled my bladder. Peeing afterwards was fine too to begin with but I'm feeling sore now. Mostly I'm just so tired. It's still not really hit me that it's over. But they didn't find anything, which means they're giving up now. They've found nothing dangerous so I just have to deal with it. As usual...

  8. Just stumbled across your blog - sorry the cystoscopy was so crappy. I've never had one and now I'll be sure to say no if anyone suggests it! I've had vestibulitis/vulvodynia (I don't think they can quite decide which one) since 2000. It sucks donkey balls. Good luck trying to get this figured out so that you can function more normally. I haven't been able to go back through your posts but have you tried any biofeedback or physical therapy? Dumb question I'm sure. :)

  9. Thanks for all your support guys. I've been avoiding the internet but I appreciate that you left all these comments while I was away. They are great to come back to!

    Stef, I'm glad your cysto wasn't so bad. I think mine must've been particularly bad because the doctor seemed surprised that I reacted like I did. I'm sure the lidocaine did something but maybe it wasn't on the right parts (maybe it was stretching my urethra and the external part wasn't numb, etc.). I really thought it would be okay -- I even thought my butt cheeks were kinda numb before he went in -- but in retrospect he should've given me local anesthetic if he felt it was a necessary procedure.

    Thank you all for your suggestions. I agree that looking outside of my city might work -- but really, I've SEEN the vulvodynia specialist here! I've SEEN the urethra-pain people here. I don't see how chasing after other doctors outside of the city is going to be any different. If the ones here are dead ends -- the ones at the big, expensive, world-renowned hospital -- why should I believe in the others?

    Also, I'm sure physical therapy might help, but I don't think it's going to do much. I DON'T think this is a pelvic-floor problem. I could be wrong, but there are too many things about it that seem to be about the skin, the skin, the skin. For instance, the burn in my clit, my "spongy" urethra, the ebb and flow that seems unrelated to how tense I am, the diet response, the way it started (all of a sudden, like an infection). I will definitely keep it in mind, but for now I'm spending all my insurance company's money on the things they will cover. One thing at a time.

  10. And I didn't say it enough -- THANK YOU for your support and for leaving me links. I DON'T mean to brush you all off!!! I take your suggestions to heart. I just have to go with my gut for now, and my gut says to rule out things in a methodical way. Most vulvodynia treatment deals with managing the pain, and that's FINE and necessary -- once you've decided the pain's source can't be determined. I haven't decided that yet. I KNOW I may have to accept that someday, but for now, I have health insurance for a reason, and I might as well offer up my body to the ultimate scrutiny, especially if by doing so I can shed some light on the problem (even by eliminating culprits).

  11. It is helpful to find the culprit yes, but sometimes, you need to deal with the "souvenirs" the original cause of the pain left behind.

    Take me, for instance. Four months ago, I learned that I was infected with a yeast that is not commonly tested for. A little while after this, it dawned on me that this little bugger may have already been there when the pain first started in '07. I do not have this infection anymore- I now have a brand spanking new one of Candida Albicans (joy). But, I have learned that yeast is probably (can't say 100%, but very likely) to be the main reason I got vulvar pain to begin with.

    Now, you might say to yourself, "Oh, if she just gets rid of the yeast, she'll be okay". Well, that's not necessarily true. Long-term infections like to leave behind "souvenirs". Mine are skin damage, pelvic nerve damage, and a pelvic muscle imbalance (caused by wonky tailbone pulling on them). I do not think I would have all that had the docs looked for more than just C. Albicans in the beginning. Plus, when I get a yeast infection, it either never goes away, or gets swapped out with another strain. B/c it's been left unattended so long, I *can't* for the life of me seem to get rid of it. So you see, this is why multiple treatments may unfortunately be necessary, b/c like the old song says "One Thing Leads to Another".

    About why a vulvodynia specialist *may* help. I have my own experience with this. I went to to a big clinic, too- the Mayo in Rochester. They did NOTHING for me, not a single lab test. Just the damn q-tip that felt like a razor blade (it's not so bad now, but that's another matter). So, it does seem that sometimes, you do need to see someone who is very open about the fact that they *thoroughly* treat vulvar disorders. Regrettably, such folks seem to only exist in a few locales at this point. I found a nice doc in NYC who I can see occasionally (can't afford to go every month or anything like that).

    Have you ever been tested for non-Albicans yeast? You may have to ask a Dr. specifically if they are familiar with testing for these. I would have *never* thought my problem was related to yeast had I not been tested.


  12. Thanks for your suggestions. I did see a vulvodynia specialist, but like yours, he just did the razor-blade test -- to confirm that I hurt? -- and then suggested things to treat the pain but no further tests (like hormone levels, etc.). I wasn't satisfied with him at all, but I think the route I'm going in my city (in my insurance, etc.) will get me at least part of what a more involved specialist would do. For instance, I'm scheduled for a biopsy, which will address the whole range of things that could be detectable in my skin. I'm also going to do the MRI my urologist suggested (he doesn't think it will show anything, but I might as well! Did the cysto I knew wouldn't show anything :)).

    I'm so glad you figured out you had a weird infection even if it was (so frustratingly) too late. I don't know what causes my pain, so I don't know if I'm dealing with the root cause or the souvenirs (or both -- as I wrote in my first post about the urologist, I recognize that living with pain can cause more pain). I've wondered if mine is fungal too -- and I'll mention that at the biopsy. I see pelvic-floor therapy as a way to maintain the pain (maintain the non-pain!) as opposed to treating the cause. When I get to that point -- where I'm at a dead end and all that's left is to focus on reducing the pain -- I will certainly be open to pelvic-floor therapy. I'm not writing it off! I just don't think it has a place for me right now, especially in the midst of my mental and emotional exhaustion.

    Part of the extended failure of my diagnosis (or resolution) is -- in my eyes -- the hopscotch way I've (we've all) had to go about digging deeper into the problem. No conference of minds, no main doctor, no, as my urologist conceded, multidisciplinary approach to figuring out what's wrong. So, methodical is the word now, because I can't stand the complete lack of science that's going on concerning my body.