Saturday, March 21, 2009

Vulvodynia Warning Signs

Looking back, I can see my vulvodynia foreshadowed in some health problems I had before the chronic pain arrived.  As vulvodynia likely has multiple causes, these warning signs won't apply to everyone -- and I don't mean to be a scaremonger! -- but I wish someone had pointed out the link to me before I crossed the point of no return.

I also see these as warning signs for interstitial cystitis (in me).

A History of Urinary Tract Infections

I had recurrent urinary tract infections as a toddler, a few in my childhood, and two in the six months before my vulvodynia started.  As a toddler, once my parents had me shower instead of bathe, the infections went away, but the doctor told my mom I have a narrow urethra (yes, like Hank Hill -- reason #6274 that's my favorite TV show ever).

Prolonged or Recurrent Antibiotic Use

The first UTI I had in the six months leading up to my vulvodynia resolved with lots of water and cranberry juice, but the second one forced me to get antibiotics.  When the chronic pain started, I was on antibiotics for about two months straight and then a couple more times as the doctors tried to figure out what was wrong with me.  Over that time, my pain got worse.  Had I been diagnosed with vulvodynia or interstitial cystitis from the start, I think my pain wouldn't have advanced alongside the antiobiotic use like it did.

A History of Digestive Problems

I had always had an uncomfortable stomach, but after I got mono my senior year of high school, my intestines were never the same.  I would get run-to-the-toilet, watery-explosive diarrhea the moment a Tootsie Roll crossed my lips -- or Cherry Coke, or Wheat Thins -- the triggers weren't consistent, but I learned them immediately!

The diarrhea resolved slowly, and instead of exploding, my intestines would just cramp a lot and send things out prematurely when they got triggered.  That still happens -- refined sugar, chocolate, and caffeine are basically laxatives for me.

Three months before my chronic pain started, my gut shut down for a week.  I was in constant pain as I felt whatever offending food I had eaten move step by step through my intestines.  I always knew where it was, and I tried every over-the-counter medicine I could find to get it out of there.  I don't know if it was food poisoning (I've never heard of it moving so slowly) or simple intestinal devastation, but that was one of the worst weeks of my life.

Pain with Arousal

Starting in my late teens or early twenties, I would occasionally get sharp pains in my vulva when I got aroused.  Penetration and touch didn't hurt, just arousal.  The pain was fleeting and I didn't concern myself with it, but looking back, it wasn't right.

Low-Level Pelvic Pain or Discomfort

Two months before my chronic pain started, I developed what I can only describe as minor discomfort around where my bladder is.  It was August, and I had no air-conditioning, so I thought maybe I wasn't drinking enough water -- maybe I was sweating it out and my bladder wasn't happy with that.  When the real pain started, that low-level discomfort grew steadily over the course of a day just like a bladder infection might.  I chugged water, peeing every hour, but unlike a UTI, increased urination just made the pain worse.

Pain that Resists Treatment

This goes without saying for those of us diagnosed with vulvodynia or interstitial cystitis, but I think it's important to note that pain that does not respond to treatment is probably not due to the condition the patient is being treated for.  Had my vulvodynia/IC been a UTI, it would have responded to increased water intake, and if not to that, to one of the several antibiotics doctors put me on over the following months.  Had the pain been due to treatment-resistant infection, it would have been due to a more complicated physiological problem than a run-of-the-mill UTI.  Not all manifestations of medical conditions will fit into the conditions' boxes, but if they don't, it should send up a red flag.

I know it's mostly you already-afflicted girls who will be reading this, but we AAGs should band together, make a hindsight list (HL), and do something with it.  Let me know if you're in.


  1. Hey Esther,

    That's a great idea.

    I'm in!

  2. I'll never know for sure what any cause was, if indeed there be any single cause.

    I can remember being a little kid, and having an irritated, dry vag... I don't know why I never told anyone. I should have. Maybe someone coulda given me some kind of ointment or something. But maybe that would have made it worse?
    I can remember being a little girl & trying to splash & pour cold water onto it after peeing. I distinctly remember feeling discomfort...

    Could never use a tampon. Never went in. I don't know if that was the pelvic floor dysfunction since forever, or a warning sign of vestibulitis. No way to know now.

    I have always had an issue with frequent, urgent urination - but no history of infections or IC. It was bad enough so that it got me in trouble at school. The teachers got pissy at me.

    Was on antibiotics for a prolonged period of time for chronic acne. I think I was on a low dose for a year or two. Minocycline, I believe the antibiotic was. I got it down to taking it once every other day at the lowest point.

    My fourchette tore when I first tried to have sex. That's an injury (quite accidental, I assure you. I may've been predisposed for that to happen just because of the way my body is put together.)

    I was on The Pill for 2 & 1/2 years.

    There's too many things going on, I can't, I can't figure out any single cause. My mom blamed herself at one point for taking an antibiotic while pregnant with me before she knew she was pregnant. I can't blame this on her!

  3. Thanks for sharing! I'll keep this in mind in case Jocelyn ever presents similar symptoms. That whole shower instead of bath thing makes so much sense, but I don't know that I would have thought of it.

  4. I think it's definitely a good idea. A couple of possibilities to add - I had severe chicken pox when I was about 5. They were everywhere - including inside me. There have been suggestions that maybe I have a scar that gets irritated or something?

    I take the pill and have done for 7 years now.

    When I first went the hospital and was diagnosed with volvodynia, they suggested that there may be a connection between pessaries used to treat thrush. As it happens, I didn't have thrush - so yet more wasted medication that probably did more harm than good.

    I had campylobacter (food poisioning) and was on very strong antiobiotics a few years ago.

    I've been reading a lot lately about the connections between different conditions and they all seem to link back to anxiety. I know I have an anxiety disorder so I wonder whether this has made me more likely to get other things?

  5. Thanks all for your awesome comments!

    K, my mom took an antibiotic while pregnant with me too! I have spotted teeth and she's always worried that it was the antibiotic that did it. But I feel like you do -- it can't be her fault! How could she know? Probably wasn't the antibiotic anyway.

    Stef, I have anxiety too. I used to wonder if the problems I had were due to it, but lately I've been thinking the anxiety's another symptom. When I changed my diet, my anxiety got a lot better, as good as it ever was on the best meds. I don't know if that's the case for everyone, of course, but mine seems more like a symptom than a cause.

  6. I see what you mean about the symptom vs. cause thing. I suppose having embarrassing problems that you don't like to tell people about and stop you wanting to do lots of things is bound to make you anxious. With me I think it's a bit of both. I've had anxiety since I was very young, but the rest of my incurable tranche of problems are relatively recent in comparison, and the anxiety is far worse than when I was a child.

    Who knows... I seem to be gaining more incurable nonsense all the time. I'm starting to think IBS adds to the list - another trip to the doctor, yay!

  7. Stef, just to clarify, I meant that anxiety, for me, seems to be from the same source as some other problems -- vulvodynia and IBS, namely. Changing my diet improved all three, so they are all symptoms of one health problem (gluten intolerance). But I agree that anxiety can also be a symptom of a symptom, so to speak.

  8. Esther, that pain with arousal bit is making me thing there is something wrong with your bartholin glands as I have had those symptoms for the past year and I know for sure since they have always troubled me and right now both of them are out of order.

    I hope you'll get well