Intimate History: A Vulvodynia Tour

I'm writing this post to record in detail my experience with vulvodynia. When I was new to vulvodynia and doing all the research I could stomach, personal accounts provided the most informative and comforting reading. So I hope that a post like this might help someone else figure out what's going on with her body and make her feel a little less alone.

In other words, this post will be long and boring except to the person I intend it for.

Because when the pain first started I thought it was a UTI, I associated it mostly with urination and the fullness of my bladder. It hurt to go pee, from start to finish, as opposed to my usual UTIs which involve pinching only at the end of urination. I didn't have the usual UTI urgency either -- just more and more pain as my bladder got fuller. It also hurt to put pressure on my bladder in any way: bending, squatting, leaning, jumping, coughing, etc. I drank a huge amount of water the first couple weeks I had the pain but it just made everything worse, including giving me a half-hour or hour of ringing pain in my crotch every time I went pee.

After the initial course of UTI antibiotics didn't work, I went to urgent care. The doctor gave me antibiotics for Chlamydia (immediately after taking a culture, which came back negative, of course). I pressed him on my specific symptoms, and he said it was possible that I had interstitial cystitis, a chronic pain condition involving the bladder.

I'm still unclear on where the line falls between interstitial cystitis (IC) and vulvodynia. My vulvodynia has always included pain during urination -- I have not peed once in the past two years without some level of pain. I also feel increased pain as my bladder fills, but I don't have an urgent need to urinate like I do when I have a UTI. IC descriptions include urgency as a primary symptom. I do end up voiding more times a day than I would otherwise simply because it reduces the pain level, but I also void less than I would if I didn't have increased pain with urination. In other words, I'm completely in control of when I pee, which is a different feeling from the UTIs I've had. UTIs make you plow through people to get to the bathroom; this condition leaves me the choice of when to go.

I think both the urination pain and the bladder-pressure pain could be due to vulvodynia. With vulvodynia, the nerves down there are hypersensitive, presumably also those in or at least around the urethra. A full bladder presses down on everything else and triggers those nerves. The thing is, even to this day, it only takes a couple tablespoons to start up the bladder-pressure pain, and it's an awful choice between voiding my bladder to get a short time without that pain and holding it in to avoid the urination pain.

In other words, OMIGOD DO I HATE PEEING.

When the urgent care doctor suggested IC, I did have one symptom that seemed to match: pain in my clitoris. From what I understand, the bladder is right above the clit, which puts the clit in a prime location to be a resonator for what's going on in the bladder. Sometimes my clit would hurt by itself, sometimes only upon touch. I couldn't wash down there without hurting it, and clothing would set it off too.

Not surprisingly, I completely stopped masturbating. If I mustered any sexual desire at all and then managed to act on it, I'd be paying for it the next day. My clit would hurt, my vag would hurt, and the whole thing would burn like I was being punished for something sinful. And, of course, it wasn't even worth it -- orgasms hurt too. I became sexually dormant, the complete opposite of how I had been before. I didn't even have a mental interest in sex, let alone desire anywhere else in my body.

As time went by, the burning crept in: the whole area inside my inner labia from my perineum to my clit would burn like it was under acid during large swaths of the day. It didn't matter if I was wearing clothes or not, sitting or standing or lying down -- it just burned. Sometimes the burning woke me up; sometimes it kept me from falling asleep. It raged on top of the bladder-pressure pain and the urination pain, its own separate issue. It would fade away for no good reason and then come back a few hours later.

After the guy I was seeing dumped me, I attempted a few times during those first eight months or so with vulvodynia to at least make out with someone. The first time, the pressure of his body on mine -- fully clothed -- was too much for me to handle. I shut down, but of course I didn't know what to say to him. I didn't like him anyway, so off he went.

I had a fling with someone the following April, and the same thing happened: I couldn't even stand to have him pressed up against me in any way. No big deal; didn't like him either.

During this time, I went on three different antibiotics for UTIs. Then I saw a doctor who thought it was yeast, so I did the oral pill and the cream, but that just irritated things more. I tried different cream; no go. I tried boric acid suppositories, which didn't do anything either. Then I saw someone who thought it was bacterial vaginosis. Onto another antibiotic, but of course it didn't help. When I went back to see her, she said she saw nothing under the microscope and suggested I bathe in oatmeal or baking soda.

I gave up for a while. Then I saw my mom's gynecologist who immediately told me it was probably vulvodynia. She cultured me for everything under the sun, which involved swabbing my urethra -- felt like I was birthing demons. About the same time, I eliminated gluten from my diet and started feeling better. I told my gynie I would hold off on treatment for the vulvodynia until I had more time to spend with the diet.

Here's what going gluten-free did for me: within two days, the cyclic burning had all but subsided. I still had residual pain and the urethra/bladder pain, but I was no longer inside a raging fire for most of the day. Later, as I stuck to the diet, the clit pain lessened, at times becoming a non-issue. I also started peeing better, especially after I eliminated refined sugar. I didn't have as much pain when I moved and things like farting and coughing became less dreadful.

About a month after I went gluten-free, I tried having sex for the first time since the pain started. I couldn't even have dreamt of having sex before I stopped eating gluten. I didn't have too much pain from being pressed against someone down there, but I had a huge amount of searing pain upon entry. I had to ask him to stop and sit there a minute while I adjusted. No, I don't know what "adjusted" means here -- but once we got going, the pain was minimal.

Of course, the whole next day I was in agony. It was as if there was still a penis inside me, a razor-lined penis.

I tried having sex again last December, this time with someone new, and it was basically the same: I had to ask him to stop upon entry because the pain knocked the wind out of me. The next day wasn't unbearable, but I developed a UTI that I couldn't get rid of with water and cranberry juice. I went on antibiotics and experienced the worst pain I've ever felt in my life. I was in utter agony, spending the worst parts sitting on the toilet crying. Being on the toilet without anything touching me down there was the only way I could feel better. Nothing worked for the pain, either, so I just sat and waited for it to pass. It was the kind of pain that wouldn't let you NOT cry, not because it smarted or stung, but because it was so unbelievably painful.

I went to work at my serving job with that pain and spent too much time crying in the bathroom and blinking tears away as I walked to my tables. The next day I called off, like I should've in the first place. I had gone in because the antibiotic pain was cyclical, just like the gluten pain, and I wasn't in pain when I left for work. I, eternal optimist, thought that if the pain hit the Aleve I'd thrown in my bag would do the trick even though it hadn't before. I really don't know how I survived that shift!

After I finally finished the antibiotics, things seemed to be going well, but the diet change never proved to be a cure. I went back on gluten for three weeks last February to get a Celiac test, and the burning returned. It took me a while to recover from eating the gluten, but improving my diet brought the same results once again.

Over the summer, though, the continued pain wore me down. I asked my gynie for something for it, and she gave me Lidocaine, which worked once and then stopped. A few weeks later, I found myself crying to her at my pap appointment. That's when she referred me to the specialist. She reassured me that treatment can reduce the pain and said that the doctor she was referring me to could help me out better than she could.

The specialist, as I said in an earlier post, turned out to be a partial bust -- in that he didn't tell me much that I didn't already know. I still have to find a psychiatrist so I can try the oral meds for the pain. The only other medication option he endorsed (besides Botox) was Lidocaine for 6-8 weeks, which, as I also mentioned before, makes my skin wrinkled and irritated.

These days, my pain seems dependent on what I eat. If I eat crap -- corn, sugar, something that I'm not sure is gluten-free -- I'll feel like crap. The acid burn will start again, I'll have a harder time peeing and be in worse pain while I do, and my body will feel bad in general. If I manage a good diet for some days in a row, I'll start to pee better and with less pain and the burning will lessen or, at times, disappear.

The best I've felt since my vulvodynia started is as follows: peeing only hurts upon starting; peeing approaches racehorse-ish; there is no acid burn; there is some residual low-level pain; I don't hurt when I'm walking/leaning/driving my car, and coughing/laughing/farting hurt very little. I can dance without choosing moves based on how they affect my crotch, and I can press myself up against a makeout buddy without thinking about the pain. But as I said in an earlier post, my eat-right will is depleted right now, so I'm currently somewhere in between.

Oh, and I've had a handful of pain-free orgasms (meaning no added pain from the orgasm) since the diet change. Hallelujah.

I refuse now and indefinitely to have vaginal sex. Not only is it totally ridiculous to ask someone with vulvar pain to have intercourse, but for me, the risk of getting a UTI is too great. I can't stand the thought of going through another course of antibiotics. I would absolutely have to take knock-me-out painkillers along with it.

I read a lot of accounts of vulvodynia being largely about pain upon contact, so I want to make clear that my pain has never been contact-dependent. Though contact can affect it, it mostly has its own ideas. Going gluten-free, it's a lot less sensitive to contact and movement than it used to be, which makes things like riding a bike seem feasible again.

Edit: I just read at thefreedictionary.com's (imperfectly edited) medical dictionary that vulvodynia that is not contact-dependent is called dysesthetic vulvodynia:

DYSESTHETIC VULVODYNIA. Women with dysesthetic vulvodynia have constant burning throughout the genitalia or in different areas at different times. Symptoms do not necessarily occur in response to touch or pressure on the vulva, although activities such as sexual intercourse or bicycle riding may increase the discomfort.

Yeah. That's what I'm trying to say. That's opposed to vulvar vestibulitis (also vestibulodynia):

VULVAR VESTIBULITIS. VVS symptoms are confined to the vestibule and vary from mild to severe. VVS often begins suddenly, following an infection or trauma. Painful sexual intercourse may be the first symptom. The intense itching and painful burning can turn into chronic pain. Symptoms may occur daily or only with sexual intercourse.

VVS is what most accounts I've read sound like, so I'm glad to see that I'm not crazy in thinking they didn't match my symptoms! However, most of my pain nowadays is contained to my vestibule, which is why the specialist said I would probably be a surgery candidate. I also definitely respond to the cotton swab test (= razor), so maybe I have some aspects of both.