Wednesday, December 8, 2010

Lessons on a Vulvodynia Sick Day

Awesome flare! It has me on the couch at home instead of at my desk at work. This has NEVER happened to me before -- not without some exacerbating factor like being on antibiotics, and that only happened once. Today, my crotch ignites every time I move my legs, from rolling around in bed while waking up to shuffling around the apartment trying to get ready for work and making desperate cups of tea in a long-shot cooch-soothing effort.

Now that I'm lying still on the couch, the rage is diminishing. I'm hoping to get out the door in the next hour. It's important that I do, and it just dawned on me why: because no matter how bad the pain gets, even those times spent crying on the toilet (which I've done enough of these past few days, stocked with pillow and blanket in case I could fall asleep) have never been as debilitating as depression and anxiety. Mental instability trumps every kind of pain my cooch has thrown at me.

And as I -- let's phrase it positively -- gain more and more experience dealing with vulvodynia (boost that resume!), I've begun to understand the importance of having a stable mind when one faces chronic pain, serious illness, or any life-altering condition or situation. If you are mentally stable, you have psychological reserves that compensate for your physical or situational shortfalls. If you're not mentally stable, even the stable parts of your life can't save you -- your financial state, say, or your social network, or even the roof over your head. If you're not stable, a challenge like chronic pain will topple you over regardless of the other resources at your disposal.

However, I've noticed that the more time I spend with vulvodynia, the less extremely I react to the pain, even when it's immobilizing. Though I have cried about it over the past few days, I haven't been the sobbing wreck I've been before -- this despite the depression that's been haunting me over the past month or so.

I think what's happening is that the pain doesn't surprise me anymore. It baffles me, but my response has become more awe than surprise -- like this morning, the way every step is searing. What kind of mechanism could possibly set off so much pain?!? But I'm no longer scared of it. The pain still feels like destruction, but I've become convinced (99%) that it's not.

So I want to say to those who aren't there yet: look ahead. As you walk through your pain, you'll approach a point where you, too, are no longer devastated by your condition. It took me four years, and there were so many times I wanted to give up. I never thought I could reach this kind of peace with it; I never imagined it was possible. I wasn't even capable of the concept -- that my pain and I could coexist, that I wouldn't always be dangling over a fire.

As I mentioned in an earlier post, I'm volunteering with AmeriCorps this year, and part of my service involves facilitating "homeless book clubs." Yesterday, I visited a book club our outreach nurse runs, a group of homeless men living in a convalescence home as they recover from serious illness. They are reading The Giver, a book whose underlying argument is that pain informs life. The nurse asked whether the men's struggles have made them deeper people, and the men answered a resounding yes. Underneath their responses, I sensed pride -- they recognize how much more they know, how much deeper they are than if they hadn't struggled as they have.

That's the kind of pride I have now. Or maybe, again, it's awe. Thinking of what I wouldn't know if I didn't have vulvodynia stuns me.

And though I can't fathom what comes after this point, I know for sure there's more to learn.

P.S. I still have some magnets left! Email me at madpeachblog@gmail to get yours!!! They are little flexible used-car-dealer-type magnets, but they are free, and I will write you a nifty card as well. If you've already emailed me, you're on my list and will receive yours shortly.

Friday, December 3, 2010

DJ Vulva Magnet Holiday Giveaway!

Ho Ho Ho! Who wants a magnet?

Send your address to madpeachblog@gmail to receive this most vagy of holiday gifts -- a 3.5" x 2" magnet for your fridge, dilator case, or biofeedback machine!!! A little reminder that tuning your dial to WVAG FM may just brighten your day.


The dinosaur VagaceratopsJust thought you should know.

Friday, November 19, 2010

Vulvodynia: Intercourse Impossible

Last post, I wrote about a news story a local Cleveland station was advertising -- "Off Limits! Married Couples That Can't Have Sex." I was out of town when the story aired live, and the video on 19 Action News' website wasn't working for me at first, but tonight I got it to work! Check the story out here.

The report, or at least its packaging, is par for the course for 19 Action News, The Only News Team With A Chopper. One of my favorite lines from the story: "She was diagnosed with a condition called 'vulvodynia' -- Intercourse Impossible."

Even with the hype, I think the report is valuable. A LOCAL STATION IN CLEVELAND RAN A NEWS STORY ABOUT VULVODYNIA. That's worth about a thousand points. But also, the report features a couple who speak openly about the woman's vulvodynia and the surgery she had to address it. It also features a doctor IN THE AREA who is NOT the vulvodynia specialist I saw who JUST treats female sexual pain. Appointment time...

I will continue to make fun of 19 Action News, The Only News Team With A Chopper, because they are silly. I also know they only ran the story because it involved SEX in a way that they could package as SCANDAL. However, I appreciate how something so stupid as a hint of scandal can cause a News Team With A Chopper to accidentally raise awareness about a serious and virtually silent condition. Sometimes our gossip obsession pays off.

Sunday, November 7, 2010

Vulvodynia on 19 Action News: "Off Limits"

19 Action News -- the only news team in Cleveland with a chopper, and also the only news team in Cleveland that uses expressions like "thugs" and "just horrible" -- is advertising a health special they will run on Monday, November 8: "Off Limits -- A Medical Alert."

"19 Action News with a frank look at a growing phenomenon," their website says. "Married couples who have never had sex.

"It's not because they don't want to...but rather because they can't.

"Go inside the strange, embarrassing condition affecting millions of women that no one's talking about.

"Nobody, that is, except 19 Action News!"

I couldn't have written a more fabulous teaser myself!!!

Nowhere on their website or in their commercial do they say what the condition is -- but I've got a hunch.

And, of course, I'm going to be out of town! I won't be able to watch! I'm hoping they post the story to their website after they air it. I'll be sure to follow up with you guys!

On their homepage, 19 Action News is running an expandable header that says


Then, when you expand it, it says


19 Action News. Honest. Fair. Everywhere.

Friday, November 5, 2010

Dr. Jack Says Sclerosis of the Spine

"Well, I have vulvodynia -- chronic vulvar pain."

"Yes, I know what it is."

I know simple transcription doesn't always capture things like condescension and hostility, but generally, this is not a good way to start off an appointment.

Also not good: being questioned about why I made a same-day appointment for hip pain I've had for a year or more.

Why? Because I woke up last weekend with electric skin from my waistline to my mid-thigh, from my bellybutton to my outer hip. It lit up with just the touch of my finger, just the brush of fabric while getting dressed. And it's still like that six days later, and while I don't think it's in the process of killing me, I also don't want to wait a month to see someone about it. Is that okay with you, Dr. Jack Something? Something with an A?

Everything Dr. Jack said was confrontational. I wasn't taking any vitamins? How could I have such a high vitamin D level if I wasn't taking any vitamins? Not any vitamins at all? Why wasn't I taking any vitamins? Had anyone ever recommended vitamins? Why had I made a same-day appointment? I hadn't ever seen Dr. Kelleher? Why was Dr. Kelleher listed as my primary-care physician if I had never seen her?

"I don't know," I said, letting my voice fall to the floor.

To ward off tears, a friend once told me, look up. I looked across the room to the blood-pressure dial, staring its flat face at me from the wall. It twirled its needle nose, nodded a reminder about the delicious pending snow, and told me, "Get mad, not sad."

"Get mad, not sad," I thought.

"Get mad, not sad."

Mad, not sad. I'm mad. I'm mad. I'm mad. This doctor is short! And awfully rude! Manners aside! Self-doubt aside! I am permitted to get mad!

The blood-pressure dial started rocking against the wall and flailing its little black pumps out into the air. Get mad, not sad! Get mad, not sad! Mad, not sad!

I was sad because as soon as a doctor disrespects you, you know you had a bad throw of the dice. Now you've spent all this time, all this money, and maybe you've even taken your clothes off and spread your legs, and all it got you was more stress. I was sad because I felt so unlucky.

And no matter the blood-pressure dial's flailing, I couldn't get mad. Why is it so hard not to feel wrong in the presence of a Dr. Jack? How could it be right for a doctor to be confrontational from the door? How had he shrunk me to a pea?

Speaking of pee.

"Any chance you're pregnant?" the X-ray tech asked.

"I guess technically, yeah," I said.

"You are?!" she asked.

"No, I mean, I'm not on my period. You never know for sure."

Robe off, clothes back on, back up four floors to the internists' office telling everyone I saw I was there to take a pregnancy test. Pee in the cup -- IN the cup, INNNN the cup -- tell me, Dear Lord, why do they always put the paper towels and the cup-receiving box on the opposite wall? And why is there never a little table that says, Dear Patient, THIS is a good temporary spot for your pee-doused cup?

I am not pregnant. Surprise.

Should I have lied? Do people think 97% means not ever ever possible? Why aren't pregnancy tests standard before X-rays? Pregnancy is like Schrodinger's cat: until you open the box, the cat is both alive AND dead. Until my next period, I am both pregnant AND not pregnant.

And besides, technically, TECHNICALLY, it is THEORETICALLY POSSIBLE that sperm could quantum tunnel into my uterus at a point in time coinciding with ovulation and fertilize me. Take that, activists. Not even abstinence is 100%.

Back down, clothes off, robe on, "I agree with you about never knowing for sure," said the tech. Finally, another fan of quantum mechanics.

I stood up for three X-rays and laid down for two. And just now, sitting at my parents' house among two frolicking and/or growling dogs and with Medical Mysteries on in the background, I got the results, online.

HI Esther,

Your hip xray was normal.The lumbar xrays showed an interesting finding of sclerosis of the L5- S1joints.That is an indication of "wear and tear"or a previous injury.I wonder if this is playing a role with the chronic pain that you get when you sit too long, which you have attributed to a pudendal neuralgia.I again urge you to consider seeing a pain specialist.Hopefully the meloxicam will help with your pain.

Dr. Forgiven...

Injury injury injury...when I think of my tailbone, I think of the two or three times I whacked the thing so hard I went breathless -- once, I think, in a pool, and once not in one. Is that enough injury?

Wear and tear -- I am 30. Posing this as the answer makes me think of my toothless and fully spent ancestors, worn and wise and the heads of their tribes at the unfathomable age of 30.

I do not have enough tribal clout to have acquired sclerosis of the spine through wear and tear.

I realized today that my mysterious condition is actually a lot harder to deal with when I'm visiting doctors. Doctors are exhausting. Even when they're not confrontational Dr. Jacks, they require a huge amount of energy -- communicating your story, managing their info intake -- "no, this, not that; and didn't you hear me say this?" -- and just making sure you say everything you came to say, which of course never happens. I am tired of it. The more I visit doctors, the more my pain stresses me out.

In my AmeriCorps service, I'm developing a health-literacy program. Health literacy is totally trendy right now in medicine -- or getting there -- and if it keeps growing, the next generation of doctors should be gargling with patient-communication skills by the time they get new letters in their names. Here's to fewer Dr. Jacks in the future!

As for me, I'm headed for the pain guys, even though I'm not sure why -- do they treat spine problems or just the resulting pain? Why does medicine insist on being confusing? Does more and more bureaucracy mean longer and longer lives? Is that the secret? We don't die until we get all the paperwork done?! Yes.

Tuesday, October 19, 2010

My Psychiatrist, the Neurologist

My psychiatrist is awesome. At my regular visit a couple weeks ago, I mentioned how I figured I probably have pudendal neuralgia. He asked what kind of nerve problem it is, and I said, "entrapment?"
Oh, entrapment, that usually benefits from anti-inflammatory meds, and what you might try is, say, 600 mg of ibuprofen at noon and then another 600 mg after you leave work... With anti-pain meds like Neurontin, the risk is that you injure yourself more because the pain means something is wrong, but you can try to play around with it, go up to 300 or 400 mg and see what works for you, try a schedule of one at night and one in the morning to start...
I basically got a starter program for controlling my nerve pain -- from my psychiatrist! I think he must be one in a million. I've never had a doctor step outside his particular BOX to give me advice about my pain.

I've been trying a schedule of Neurontin and ibuprofen for almost two weeks now. I'm up to 100 mg of Neurontin in the morning and 200 mg at night. I take ibuprofen at least once a day, usually around midday, and sometimes again at night.

I can't say I'm feeling too much of a difference. My pain still has its ups and down -- and part of that has to do with whether I've had sex the night before. I upped my Neurontin dose a couple nights ago because we had particularly fun woohoo and I didn't get the shocking flare I'd expected the next day. Woohoo!

(As a side note, someone newly diagnosed asked me in an email if sex really hurts. I told her yes, yes it does -- but that I've realized that the after-sex pain (which usually shows up the next day) isn't anything I didn't experience when I wasn't having sex. The pain during sex can be bad, but I've learned how to think around it and focus on other parts of the experience. I definitely don't have the same sex life or experiences I would've had without the pain, but I'm able to have semi-frequent sex and not completely incinerate.)

I'm not lying down at night like I've planned to in my mind -- I think it would probably help, but I get too distracted by what I'm doing at home to make sure I'm resting my nerve.

And I haven't bought a cushion yet, and that's basically because I've entered the Paradox of Choice -- so many people suggested all different cushions that I don't know which one to choose! So I'm just going to order one and see what happens...

I'm hoping that getting a little more regular with the ibuprofen, getting a cushion, lying down more at night, and finding the right Neurontin dose will make a clear change in my pain. However, just viewing my pain as a treatable (if chronic) nerve problem makes my life so much lighter. I see the current pain as current pain, not pain that will be here always. In the next few months, I'm hoping to find a doctor who can confirm or refine (or refute) my pudendal-neuralgia theory so we can look at other treatments if they're available.

To all my ladies -- remember that your pain is also just current pain!!! I've tried to remind myself of that ever since my vulvodynia started, and it has always brought me at least a moment of peace. You never know what will happen in the future. You're allowed to be sad, but you're not allowed to give up hope for improvement!

Friday, October 8, 2010

Why You Should Blog About Your Vulva

Every day, a smattering of people land on my blog while searching for information about pouty poussies. These searches look like
And then there are the people who land here for other reasons, like
One search topic that brings someone here every few days is
Another popular search is for "q-tip test," which I also wrote about in the belly-button post. It's as if the two were fated to bring quirky searchers together.

The searchers come from all over:

I also have a few dozen regular readers who subscribe to my blog on Blogger, via e-mail, or through some other feed.

Here's why you should blog about your vulva: every day, someone new lands on my blog and finds out about vulvodynia. She finds out that her symptoms have a name. She finds other names that might be an even better fit for what she has. She goes away with something to Google that isn't a symptom: it's a specific and awfully elusive word that will lead her to a diagnosis and treatment.

I'm only blogging because one of my searches led me to Quinn's blog, Life with Vulvodynia. After Quinn's, I started reading others -- listed in the sidebar -- and they have been my most important source of knowledge about pelvic pain. Other sites provide definitions; blogs provide the how, when, where, what, and sometimes the why. Blogs are the humans; we're real-world instances of the condition. We're the ones who tell the world what all those wide and murky pelvic-pain definitions mean.

I encourage every v-girl to join the chorus of vulva blogs even if it's just to write crotch poetry or post pictures of vulva lookalikes or WRITE IN ALL CAPS ABOUT HOW UNFAIR THE MEDICAL WORLD IS. If you do, someone is going to land on your blog and learn about what she has. And she'll learn that you -- and a whole community -- are right there with her.

P.S. If your blog isn't in my blog's sidebar, let me know!!!

P.P.S. I have a free StatCounter account to track traffic to my blog.

Saturday, October 2, 2010

Self-Diagnosis: Pudendal Neuralgia

I decided several months ago that I have pudendal neuralgia. It was a "well, duh" moment. I'd been reading blogs about pudendal neuralgia for a while and I'd crossed tracks with it several times in my research -- but I never thought I had it because I'D SEEN TEN THOUSAND DOCTORS AND NONE OF THEM TOLD ME I HAD IT. Of course, I saw ten thousand doctors before Dr. 10,001 told me I had vulvodynia, so I don't know why I thought pudendal neuralgia should be different.

Anyway, late last winter it finally clicked in my head that this pain I have while sitting is probably related to my vulvodynia, and boy, doesn't that sound like something else I've heard of? The center of my sitting pain is actually below my tailbone, right above my hidey-hole, and it feels like someone is trying to jam a fire hydrant up there or something. describes the main symptom of pudendal neuralgia as
"pain in one or more of the areas innervated by the pudendal nerve or one of its branches. These areas include the rectum, anus, urethra, perineum, and genital area. In women this includes the clitoris, mons pubis, vulva, lower 1/3 of the vagina, and labia."
Uh, yeah! All of us V-girls? What I like about this description, though, is that it names the clitoris and mons pubis as part of the territory, which vulvodynia never seemed too concerned about. Indeed, the vulvodynia specialist I saw told me I might be a candidate for vestibulectomy -- as if he'd never heard me say my clitoris hurts too! Oh sure, cut out the vestibule, then I'll be fine... I'd actually say my clitoris and the inner mystery just above it are the most assailed parts of my vulva.

Some other symptoms I have that intersect with pudendal neuralgia, the ones that made me go OMG! You are so much more accurate than vulvodynia!, again from
  • Pain is not immediate but delayed and continuous and stays long after one has discontinued the activity that caused the pain (hello morning-after flares)
  • Pain after orgasm
  • Need to push to empty bladder
  • Urethral burning with or after urination
  • Feel like bladder is never empty or feel the need to urinate even when bladder is empty (note the similarity to interstitial cystitis)
  • Pain after bowel movement
  • Feeling of foreign body in rectum.....................................(I am so hot)
I have to admit, every time I read these symptoms I get very excited. Will I be able to be treated??#$@???!?@@?!????? My fingers fly all over the keyboard. But it's not even the treatment that revs me up -- it's the idea of having a physical explanation, a REASON for my pain. KFJEJ:OEWRUW#)(%)#()*!!!!!!!!!!!!!!!!

I'm writing this post now because I'm two weeks into sitting at a desk full time, and my butt and the chair are not getting along. At first I found exotic new ways to sit in an office chair. Then I put my feet square on the ground and leaned forward until my nose dusted the computer screen. By Wednesday of this past week, I was standing up every few minutes to relieve the pain and revisiting pudendal neuralgia online.

My vulvar pain has also changed shape with all this sitting-sitting-sitting. My clit is in a session of obnoxious pinchiness, kind of like getting a shot. My bladder has been hurting more as it fills, too, which means I've been peeing more.

I'd been lucky for fifteen months prior to starting this job -- I was working as a waitress, standing up all day long. When I came home, I'd sit or lie on something that would be nice to me. When I went to bars, to restaurants, to visit family, that fire hydrant would shove itself up into my life and I'd roll around on the chair and deal with it until the night was over. Walking around at work all day wasn't great, and occasionally I'd get bowlegged (at least mentally) because every step gave me a urethral twinge. But, as I suspected, it totally beat sitting in a chair.

For a couple years before waitressing, I was a student, so I was never stuck in any seat for very long. I had pain, but again, I wiggled around it. It was back in 2006-07, when my vulvodynia first started, that sitting in a seat was last my full-time job.

Now I'm realizing that the horrid pain I had during that time was probably compounded by all the sitting. I quit that job around the time I stopped eating gluten, so I thought gluten had been the elevating factor -- but it probably wasn't alone. In fact, the pain I'm feeling now in my clit/bladder region is a lot like it was when I was at that job. It's not as bad, but it's a similar quality. I still think gluten plays a role -- it's inflammatory and makes my life suck in general -- but now I realize it probably wasn't the only culprit.

And! My period of least pain since I got vulvodynia in 2006? When I was lying on my back last winter for 10 days with a laryngitical flucold thing! My pain almost went AWAY during that time. It was BEAUTIFUL, so beautiful that I cried and am almost crying now.

At the time, in the back of my head, I knew the reason the pain was almost gone was that I'd been lying down so much. But I didn't want to admit it. I STILL don't want to admit it. Because I don't. Fucking. Want. To. Lie. Down.

So this is all very good news, but I have no idea where to turn. I searched for "pudendal neuralgia" on Cleveland Clinic's website and the search returned NOTHING. Oh, Cleveland Clinic! You talk so big! I'm sure someone somewhere in that mini-city knows something about pudendal neuralgia...but I have had such mediocre care there (including aforementioned vulvodynia specialist) that I'm annoyed at the thought of trying again (Dr. 20,002). So I have to find a doctor, even out of state, who will help me out. At least evaluate me for pudendal neuralgia and tell me my options. Oh, I hope, tell me I HAVE pudendal neuralgia. It would seriously make me feel like I'd won the Olympics. Every event, summer and winter, all the way back through time.

I hate to sound SO OKAY with having pudendal neuralgia when it completely destroys people's lives. The thing is, I already have whatever I have. I'm already living with it; it's already destroyed (and rebuilt) my life (well, I'VE rebuilt my life). Having something specific and treatable is always preferable to ~~~~MYSTERY DISEASE~~~~ with the same symptoms. Please don't think I underestimate pudendal neuralgia's impact; I just want a way forward. I just want a freaking NAME, a reason, a diagram of my pain's mechanics, and pudendal neuralgia is my best bet yet.

P.S. OMGOMG! Today is my Vulvodynia Anniversary!!!!!!!!! 4 years!!!!! And somewhere around here is the anniversary of this blog!!!! 2 years!!!!!! HAPPY ANNIVERSARY MS. PEACH!!!!!!!!!!!!!!!

Saturday, September 25, 2010

Vulvodynia Burnout

Last August, Wellsphere invited me to be a Top HealthBlogger. August was not a good time for me. Neither was September. Looking back through my e-mails, it took me until December, four months later, to sign on with Wellsphere and start having my blog syndicated over there.

They sent me a welcome e-mail that said if I put their Top HealthBlogger badge on my blog, my posts will get a boost in their search engines.

I added the Top HealthBlogger badge yesterday.

I think for the past year or so I've been suffering from vulvodynia burnout. People send me e-mails. I read them. I react to them. I don't reply. People leave me comments. I read them, react to them, don't reply.

For a long time my posts were dominated by images I thought were funny, double entendres and vulva doppelgangers. Over the past few weeks I've been trying to return to quality. After all, if my blog is being syndicated elsewhere, maybe I should reconsider posting another picture of mussels.

But the truth is -- and I'm responding to Tamra over at Living with Vulvar Vestibulitis, who admitted her own truth in her most recent blog post -- I am so, so exhausted by the thought of vulvodynia, and not writing about it is a way to make it exist less. I also stopped going to doctors, another way to forget about it. I even stopped caring about managing my pain through my diet. Over the past several months, my vulvodynia went from sometimes seeming like my life's sole constituent to being something I'm coping with passively and silently most of the time.

I think one of the most frustrating things about vulvodynia and a huge motivator in my new passivity is that there are never any answers. I ate some cranberries today, and my pain went up. Which I kinda expected because dried fruit in general worsens my pain. Why? Well, no one knows, and no doctor I've ever talked to has cared about helping me figure out why, so instead of obsessing over why it happens and why no one knows or cares, I'm just going to eat cranberries if I feel like it and avoid them if I don't.

(A recent commenter suggested I might have interstitial cystitis given that what I eat influences my pain levels. I saw a urologist last year who ruled that out. I agree that the food connection sounds like IC, but I simply don't have the urgency problem that is a central and essential characteristic of IC. I have referred to the IC diet in the past, however, and I feel like it has helped.)

Dealing with my vulvodynia in a passive way has been much easier on my spirit, at least in the short run. I'm not trying to do the work of an entire medical community anymore. I'm not noting my pain levels every second. I just go about my day, and, separately, I'm in pain.

I don't know how long being passive is going to work, though. Being passive involves a lot of looking the other way. For a split second I think, "OMG IT IS SO UNFAIR THAT I DON'T HAVE ANY MEDICINE TO COPE WITH THIS RIDICULOUS PAIN" -- and then I immediately switch to "Hum hum hum! Hi-ho! Hi-ho!" Sounds like a recipe for a Criminal Minds plot.

I think I have to find a balance between obsessing about vulvodynia to the point that it eclipses the rest of my life and ignoring it to the point that I might eventually go criminally insane. I also think I need to ask for help again. Finding doctors and making appointments is still a really emotional process for me. It's hard to be optimistic that they'll take me seriously, let alone that they'll be able to help.

So that's my truth. That's why I haven't responded if you've written -- I'm reading whatever you send me, and I am with you in spirit, but writing back is beyond me right now. I've been holding my pain at a distance, making it less personal as a way to deal with life in general. I know someday I'll have the energy, confidence, drive, interest, strength to be a full-fledged community member again.

Thursday, September 16, 2010

Vulvodynia on the Job

A few months ago, I helped a fellow server run the food to one of her tables. It took a couple trips because the table was large, eight or ten people. After we were done and I had gone back to my section, the patriarch of the table asked my co-worker, "Is she part of the management?"

"No," my co-worker said.

"Good," the man said.

My co-worker asked me if I had done or said anything to the table. I was bewildered. I hadn't done anything out of the ordinary around the table, and I had no idea why someone would speak ill of me so easily when I'd just been doing my job.

So I went back to the table and asked the man if there was a problem.

"No! No!" he protested. His daughter looked at me awkwardly.

Ten minutes later, as I walked away from one of my tables, the man stopped me in the middle of the dining room.

"I didn't want to say anything in front of the table, but ever since we walked in, you've given off this attitude," he said. He went on to tell me how he worked in customer service and was therefore qualified to rate my service despite that he outwardly appeared to be a mild-mannered layperson.

I apologized and babbled something relevant, but all I could think about was how I had been up the entire night before with a burning clit and now here was a customer berating me because he had taken my post-burning-clit-night lack of obligatory waitress exuberance as an attitude. When my boss walked up, my tears spilled over, and I ran down the hall to the bathroom.

If there's one reason I have patience with customer servants, it's because I never know if they were up all night with a burning clit.

But there's a flip side to this Vulvodynia on the Job business.

Having grown fitful in my employment as a servant to customers, I applied recently for a position in another kind of service -- public. The application required that I write a motivational statement explaining why I wanted to work in service. And though there were plenty of reasons coming together to make me pursue the transition, there was really only one with my full heart behind it.

Vulvodynia. The reason I want to help other people is -- vulvodynia.

So I wrote my motivational statement about vulvodynia.

I didn't use the term. I didn't cite the body part. I just wrote "chronic pain" as that was enough to tell my story. I talked about how scary the pain was to start, how I had changed my life's course at least twice because of it, and how it has taught me to care ever more deeply about others' well-being. I thought maybe I was sharing too much, that I might be stigmatized or passed over because I was revealing such grave personal details. But I sent the statement off anyway because I knew that it was good, for one, and, more importantly, because it was the truest answer I had.

I got an e-mail the next day from the coordinator saying she was very impressed with my application, particularly my motivational statement. I got a call two days later asking me to interview for a position -- at a health-care center for the homeless.

I won't share where I'll be working because I don't want my new co-workers to know about what's going on between my legs. That's a discussion best kept for later. For now, I'm savoring the fruits of my courage -- and reminding myself that a trial like this doesn't have to be about fighting off tears after a restless night in pain. Instead, it can be about achieving new territory via this vulvodynia trial, this rite of passage that has, in the long view, never given up on making me a better human being.

Saturday, September 11, 2010

Why I Keep Having Sex Despite the Pain

My vulvodynia started in October 2006, shortly after I started dating a guy I really liked. He was a Recently Divorced Mexican Neurologist (RDMN). We managed a few rounds of sex before he dumped me.

Those first few times having sex with vulvodynia felt like having sex with a really full, really painful bladder. I tried it despite the pain because I wasn't yet convinced that I had a problem. I thought it was a bladder infection, a weird one that the antibiotics couldn't take care of. I told RDMN about it after a couple tries, and he was considerate. We did alternative things, but any kind of bumping in my pelvic region -- especially on the front, on my bladder -- distracted me from our efforts.

It took me a while to even think about having sex with another guy after RDMN. My sex drive took a jump off a cliff, anyway: I went from hoohaing (I don't use the other word because I feel like it would be extra spammy) at least every other day to maybe once a month, and every time I did, my clit felt like it had needles stuck in it the whole next day. But I still tried it once in a while because once in a while, I still got horny enough that I cared to try.

About seven months after my vulvodynia started and shortly after I got my diagnosis, I bumped into a Cute Smiley Buddha-Shaped Guy (CSBSG). He had just had his last day of work at my old workplace, and I met him at his celebratory happy hour, a few days before he moved out of town.

The first night, I deferred: I told him I couldn't have sex with him because it would hurt too bad. But the next day I thought about it, and I got curious. What would my pain be like? Would it be better than with RDMN, or had it gotten worse? Plus, my sex drive was whimpering at me for revival. I figured I'd give it a shot.

At penetration, my vulva felt like -- you know when you get a really bad sunburn, how bad it hurts to move your skin at all? That's what it felt like. It took my breath away.

But as we went, the pain subsided. We were able to change positions and try it a couple times. I didn't have much bodily pleasure, but I made it through, and afterwards I was glad I had experimented. I knew that I could have sex, physically, that though it hurt extremely bad, I was still in some way intact.

I want to pause here to expand on this point. During the eight or so months it took me to get my vulvodynia diagnosis, I felt like something was eating me alive. Vulvodynia feels like your body is destroying itself. It is sharp, stabby, and burning, and it happens in an area with a lot of stuff that you want to protect. Finally getting a diagnosis and then having sex helped me understand that vulvodynia is not a progressive disease, at least not in the sense that it was consuming me in some mysterious way.

Others have written about feeling "broken." I understand that sentiment. It exists on so many levels: broken emotionally and spiritually, broken expectations, broken faith in life, broken sense of youth -- and yes, broken physically. But for me, knowing that I maintained a sameness, a continuity with the past, helped me move forward with what I had left.

Back to the story: the day after I had sex with CSBSG, the pain woke me up, raging. It hurt so bad all I could do was sit on the couch in awe. I may have tried ice; I knew by then that I didn't have many other options. And I didn't immediately connect the raging pain with having had sex -- I had seen my pain levels go up and down for no apparent reason, and since the sex had ended several hours prior, I figured this pain spike was unrelated. Only much later would I learn that a day-after-sex pain spike is standard for me.

It took me about half a year to try having sex again, this time with a far away high-school friend, in the midst of a rekindled crush. Crush was also very considerate -- and I can't say how much I've appreciated every guy who has taken my vulvodynia seriously. I know there are tons of losers out there.

Having sex with Crush was a repeat of the pain I had with CSBSG -- the awful start receding until the next day when it returned with a vengeance. I remember sort of cursing myself for trying to have sex again because, as with CSBSG, I got a urinary tract infection -- and it just hurt so damn bad that I didn't know why I had been so optimistic at the get-go.

But it's not like I had a ton of opportunity to have sex again. Crush lived six hours away and I remained more or less indifferent to whether I was having sex or not anyway. I was still hoohaing very infrequently, which, after years of an enthusiastic private and shared sex life, I found extremely disconcerting. I felt like the sexual part of me -- that part of my identity -- was escaping my grasp. I couldn't hold onto it. I was part dead.

It's amazing how wide sex is in our lives. We think it's a small, occasional engagement, and maybe also something lowbrow and secret. But sex to me included sensuality, experiencing all of life through the resonance of my body. As I've written before, vulvodynia was a finger on the string -- I didn't vibrate anymore.

I remained sexually dead for a long time. Eventually I worked around the pain in my head so I could hooha more frequently. I started using a vibrator -- through several layers of fabric! -- and that worked pretty well. When I finally killed that vibrator my AWESOME AWESOME AWESOME FRIEND WHOM I HAVE NEVER PROPERLY THANKED sent me a couple more. (She will be properly thanked...) One is that Samantha one, the "massager." I can use that thing through my quilt!

I still felt stifled, though, and out of commission. Then, a little more than a year ago, an old college friend stopped by. She and I had had sex a couple times before, but this time, we made the sun come up. And she renewed me. I felt like I was celebrating sex again, and life, and I remembered that there are thousands of roads to a wholly satisfying sexual life. When you have a partner who respects your disease and is willing to be adventurous, willing to find what works for you both -- they save a part of you. They keep you from that robot, dead place. It's the same as being a friend to someone who's depressed or standing by someone recovering from addiction. We exist in components, and we have the power to save the suffering parts of each other.

Six months later, I tried penetration again, this time with a Random Guy I Knew. I was actually on the prowl, the first time in a long time. At the outset, I just wanted to wrap my body around RGIK in some abstract way -- I didn't want to have sex because I was still too scared. But RGIK was not one of the princes, or he was dumb, and it didn't click in his head what I meant when I said, "I can't have sex because it hurts."

As I held him off, I thought it over. I had changed my diet, done a little pelvic-floor therapy, come far in rebuilding my sexual self -- maybe I should give it all a test drive. So I acceded, and as soon as we started, he turned princely, checking in with me to make sure I was okay. The pain was again that splintery, sunburn feel at first, and then it got somewhat better. When we went for a second round, though, I had to stop him not because of my vulva but because something inside me -- my bladder? -- felt like it was going to pop. I wrote about RGIK here.

It's only because of my college buddy and then RGIK that I entered into my current relationship at all, let alone with any expectation that I would feel sexual inside it. My relationship with Catfish has been the first stretch of my vulvodynia during which I've had regular sex, almost three years after my diagnosis.

At first, each penetration took my breath away, and I'd tell him to wait for a second to let the pain pass. And after several months of semi-regular sex, that sunburn feeling has become less of a hurdle. Honestly, I think it's less scary. I don't know whether the pain has backed off, but it definitely doesn't surprise me like it used to. I've developed a mental routine to deal with it -- I think around it, focusing on the way he feels and smells, listening to his rumbly voice. I look at sex through his eyes. He reminds me why it is enjoyable. I absorb his passion and make it my own.

The pain I feel during sex varies. Some days there isn't much; other days, it's a splintery dildo. Some days he hits something inside me and it hurts. Some days he hits my g-spot. If it hurts too much, I jump ship and we do other things. Some days I'm thankful that he can be quick ;)

It may sound like I'm continually submitting myself to a painful experience for the benefit of my boyfriend. There's a lot of talk in the pelvic-pain world about finding alternatives to penetration and not having penetrative sex if it's too painful. But what is too painful? I'm learning that pain is very much a mental game. Pain is not a structural malady -- in and of itself, it does not negate the existence of your vulva or your vagina. If we value having sex more than we value avoiding pain, we can literally "push through the pain" to make sex happen.

However, I am in no way advising anyone to push through the pain if they don't want to. Each person makes her own decision about what kind of sex works for her. I'm simply explaining why, after so many splintery romps, I continue to put up with the pain in order to have sex. I do it because having penetrative sex is a way for me to reclaim territory that vulvodynia has stolen from me. I bond with my boyfriend. I'm sexual in a way that I love. I focus on the parts of sex that still feel good, the times that he gets me just right, the smells and the intimacy.

I used to think I would never be able to have penetrative sex at all. Then I thought I could never have it regularly. I'm glad to have proven myself wrong. I feel like I leveled up in the mental game of vulvodynia.

But I'm not shaming anyone who has a different experience. First of all, I was lucky always to love sex and to be very enthusiastic about it. Not all women feel that way. Secondly, my triumph over my own vulvodynia can't compare to anyone else's story. We're all in completely different spheres. Just as our bodies are infinitely different, so are our experiences with them.

I do think it's important to remember the mental side of vulvodynia. Somewhere along the way, I stopped clinging to the fence of "can't." I chose sides. If I do not want to have sex, then I am choosing not to have sex: it's not that I'm forced not to have sex, but that, because of my pain or any other parameter, I'm deciding not to have sex. Saying "no" to sex because of pain can come from a place of power when we realize that we actually do have the ability to say "yes."

Vulvodynia makes us feel like we don't have control over our bodies or our lives. But any sense of power makes us feel more in control, which can help reduce our stress levels and our depressed thoughts. It may look like semantics, but for me, saying "yes" and "no" instead of "can't" goes a long way towards helping me feel like I'm turning my life right-side up again.

Wednesday, September 8, 2010

Duh, Again and Again

Last week's flare didn't subside like my really, really bad flares usually do. It stuck with me Through. My. Entire. Trip.

Something else stuck: my intestines. I wasn't very careful at all about what I ate, and I was paying for it in a compound way. I kept packing it in. I was in so much intestinal pain the day we left that I could hardly bend over.

But this isn' This is A Day in the Life, and I'm not trying to garner sympathy or AWE. My point is to demonstrate, yet again, my constant skepticism about how much influence my diet has over my day-to-day bodily well-being.

I can see it in my skin. Not only in breakouts, but in my skin's overall texture. Weird non-dry dryness, itchy patches, etc., etc.

I see it in my mood. My tiny Lamictal dose had held me steady for over a month (and those crazy leg pains went away, thank goodness). But shove a bunch of crapola into my system and suddenly I don't know what the world is about.

I see it, of course, in my vulvodynia, and in my energy. But even with all these clues across multiple systems, I still think I can get away with not being careful. "Oh, that sauce CAN'T have gluten in it, and even if it does, it won't bother me!"

So I'm cleaning house, aka gut. Not going overboard -- too much all at once and I'll never keep up. It helps that I'm approaching a budget crunch. I eat a lot better when I don't have so much money to throw around (SO MUCH!!!!!), even just as far as what I buy at the grocery store.

Wednesday, September 1, 2010

Proper Pelvic-Floor-Muscle Form

And all this time I've had this flare, I've been checking in on my pelvic-floor muscles to see what they're doing. They aren't always completely relaxed, but they are at least sitting on the couch munching on popcorn in front of the TV. I mean, what else are they supposed to be doing? One doc says, pelvic-floor muscles, that's your problem! So I go to the physical therapist and she doesn't really tell me anything except the "elevator" metaphor -- that I'm at 2 or 3 and should be at 1. Or is it 0. Is 0 for peeing? Let's say I should be at 0 and Basement is for peeing.

Anyway, I run out of insurance, so I go up there myself and teach my pelvic-floor puppies how to lie down. So now they're back and off to the side, aware but not at attention. But I don't see any real improvement in my pain. Am I doing something wrong? Did I put my puppies in the wrong place?

When I flare as bad as I have been, I keep my puppies in the BASEMENT -- because pushing out is the only way to keep my vulva from touching itself and making itself hurt worse. I do it without even thinking about it. And I've gotten better at not reacting to my everyday pain by going up a floor or two. But I still feel like I'm missing something.

The therapist did say that therapy could help but probably not resolve my problem. So I guess this is the wall.

Flare Follow-up

I think I trashed my baking soda a couple months ago in a fit of "Why is this packaging so awkward!!!" So Catfish ran out and got me some yesterday. I was going to go get it but was -- in reality, if I can keep my head in reality and not expect superhero powers of myself -- marooned on the toilet. I mixed about a teaspoon into about 4 ounces of water and chugged it, and maybe 45 minutes later I was able to walk around again. I was able to WIPE without the mere PHANTOM of tissue contact making my cooch hurt five times worse.

Baking soda doesn't always work, but I'm thankful it did yesterday. It allowed me to clean and pack today for the trip. I had an old cantaloupe in the fridge and I ran it through the juicer so it wouldn't list for four days -- it is DELICIOUS but that juice is cranking up the burn. I don't know why this stuff happens. I wish I did. It reminds me of how much I CAN do to eat better, the way that I have for a few months at a time, very strict -- which often seems like way, way too much for a manageable life. And it reminds me of how mysterious this stupid disease is even though, at least in me, there's an observable connection between my gut and my cooch.

I know I give up on eating well in part because I get confused and my belief starts to flag. It's wishy-washy. I have no corroboration from the medical community, no corroboration from others with vulvodynia; I'm making it all up myself. And do you know how hard it is to eat well when everyone around you doesn't? And not even doesn't -- my parents are good eaters. They hardly eat any treats and never keep chips, Coke, indulgences around the house. Associating with them should make eating well easier for me. But still, their diet isn't GOOD ENOUGH for my SNOBBY SNOB SNOB crotch. And they're probably the best eaters in my little sphere.

If I knew why, if I had a group, if I could maintain the belief that good diet means behaved crotch, all of this would be much easier. Instead it's down to my willpower. It's down to whether I'm convinced that that salsa will irradiate my crotch, convinced enough that I won't eat it. And if it ALWAYS bothered my crotch, every time, that would be another story...

All this is besides the sex. I still have sex. It hurts like splintery wood, but I still have sex.

Apologies for the disorganized post.

Tuesday, August 31, 2010

Flare or UTI?

$83 later, flare.

It started on Sunday. I peed and it pinched at the end, like a UTI. I peed again and saw blood, but I was at the end of my period. Could've been my period; wrong color for end of period, but could've been. I didn't see blood again, but peeing still pinched so bad that it made me tear up. Just like a UTI.

I drained a jug of cranberry juice, popped cranberry pills and Cystex, and tested myself twice with AZO's UTI test strips. Both times, I had leukocytes but no nitrites, an inconclusive result. I've had leukocytes in my pee before without having a UTI -- one goose on the way to my original vulvodynia diagnosis. Today, at an appointment I had already made for other girlie things, the doc said I had no leukocytes in my pee at all according to her dipstick. So I almost certainly don't have a UTI. She was willing to do a culture and give me antibiotics, but $83 was enough spent today.

I'm glad I had someone check me out because I'm headed out of town. Traveling with a UTI is a sure way to, well, die. But I still spent what is to me a good chunk of money to find out, again, that I have not anything but vulvodynia. The National Vulvodynia Association conducts a survey of how much vulvodynia costs. Where's the box for how vulvodynia obscures everything else that's going on down there so you don't know what you need to do?

I've had flares that felt like UTIs before, but never one that lasted for 3 days. From now on I'll remember that if I'm not bleeding (and bleeding more and more each time I pee), I don't have a UTI. Still no blood. Still ridiculous pain. Top 5 flares! I don't even want to walk down the stairs, let alone drive to Chicago. I don't even want to walk!

I'm scared that this signals a new status quo. Will this pain pass? Or is this my new day-to-day? It's got to pass. And when it does -- when, when -- I'll be thankful for my baseline.

Monday, August 16, 2010

Self-Discipline, Or Not

Catfish brought home a 3.5-pound bag of Peanut M&Ms from Sam's Club yesterday. I hate him.

Actually, it's still sitting on the shelf, or about 3.2 pounds of it is, anyway.

If he had brought it home when I was at the top of my Effexor dose, 150 mg per day, I would have chowed the entire bag down in 2.5 days. If he'd brought it home when I was at 75 mg of Effexor a day, it would've taken me 5.0 days.

I told my psychiatrist how bad my bad-food cravings were when I was on so much Effexor, and he didn't seem surprised, which surprised me. From what I've read, serotonin does affect food cravings -- but it's low levels of serotonin that'll keep your hand going back to that bag. Effexor should've raised my serotonin levels, but instead it raised my M&M levels. Then again, maybe it was my phlegmatism that made my chocomania so expected.

My point, though, is that for a lot of what we do, there's a chemical behind it. We all talk about chocolate during PMS, pickles and ice cream in pregnancy -- but my Effexor experiment sold me on the more abstract idea that our brain chemicals can influence behaviors like self-discipline. Yeah, yeah, self-discipline is a muscle, we know; all the same, coming down off the Effexor was like giving that muscle a shot of 'roids with each smaller dose. So though we can work on our self-discipline just like any other behavior, we've also lucked (or unlucked) into its initial state just as we have the shape of our toenails.

So if you're wondering why you suck so bad at doing your exercises every day or not eating so many cheeseburgers, consider that there's probably a chemical behind it. And give into it. Let yourself suck. Eat cheeseburgers at an astronomical rate. Scolding yourself is not going to stem the cheeseburger scarfing. Accepting your weak self-discipline muscle for what it is and then working to make it stronger might.

And if you can't stop eating cheeseburgers because you're depressed, consider changing your diet as a psychiatric tactic. We store 95% of our serotonin in our intestines. Our bowels are our "second brain."

P.S. We are doing one push-up for every M&M eaten. That theory that self-discipline in any area affects every area is gonna kick in any minute.

Sunday, August 8, 2010

Facebook and More Acceptance Talk

I linked this here coochie blog to Facebook so my posts would automatically share themselves with everyone in the world I know. And that was fine, but I've realized there are some things that I want to share with you guys that I don't want everyone in the world I know to know, even in the name of raising awareness. Like particular lady-bits details. So enough of that. I'll import selectively.

I saw my psychiatrist a couple weeks ago, and he okayed stopping the Effexor. He said I seemed like a different person to him having gone off it, using the word "phlegmatic" five or six times to describe how I had been before. He said some people are sensitive to serotonin to the point of becoming "too neutral." Spot on, man! That's exactly how I felt. Beige.

So I stopped both the Effexor and the Trileptal (mood stabilizer) and now I'm on to Lamictal (another mood stabilizer). Except I think the Lamictal is making me twitch and burn in creepy ways all over my body.

If it's the Lamictal, that will suck. I think it's actually helping my brain, and there are only so many bipolar meds out there. But if it's not the Lamictal, that will suck too. That means it's another

~~~~~~MYSTERY DISEASE!!!!~~~~~~

I've been thinking about future diagnoses as my butt has become less tolerant of sitting and the vulvodynia has crept beyond its original horizon, and I realized that I'm in a different place with disease than I was before. I'm less anxious about it and more -- if it's even possible -- open. Disease feels like less of an offense, or maybe no offense at all. It's no longer something that has robbed me, taking away x, y, and z that I used to have or could've. It just is.

I think this is acceptance, and I think the underlying concession in my particular acceptance is that my body is not infallible. It's only as reliable as nature made it, and nature is successful, not perfect.

All bodies are only as reliable as nature makes them. Nature comes with no guarantees. It just tries over and over to succeed.

A body's infallibility is different from immortality. Infallibility implies guarantee. I have never thought I was immortal; I have thought that, given my age, my habits, my fitness, I was reasonably assured of what to expect from my body. But that just isn't the case.

That doesn't mean I don't get frustrated. I am feeling pretty heartbroken that the Lamictal might not work out. There are only so many mood stabilizers. Last fall's episode is still stalking me. It wasn't until then that bipolar disorder terrified me. Is it possible to get PTSD over one's own disorder?! Ah!!!!

And I'm frustrated with the creeping physical symptoms, the lack of answers, etc., etc. But I'm not panicked, exhausted, despairing, or even fearful or worried. I would hate for something huge to be wrong with me, but I'm not constantly dreading it. I'm just tired of the game in a way that's almost sinking into subconsciousness.

I still want answers. I need them -- because if I feel this crappy this young, where will I be in ten years? There is no way in the world vulvodynia is just some

~~~~~~MYSTERY DISEASE!!!!~~~~~~

Pain like this means something is WRONG. BIGGEST DUH IN THE WORLD.

Tuesday, July 20, 2010

Routines, UTIs, and Spooning

I can't read poetry when my crotch hurts.

I'm up late because I'm in the paired routine -- Catfish isn't home yet, and I can't go to bed without him. Ugh, I'm part of a pair. My independent self sooooo retches at the thought! And yet, we're up.

Catfish and I managed a sex routine for a while despite my pain. At first I was just so happy to be having sex that I didn't care how much it hurt. I had shied away from it since the vulvodynia began, only trying it three times between my diagnosis in June 2007 and starting to date Catfish last February. The first two times I got UTIs. Which got me thinking...

The one time I got a UTI from having sex with Catfish intersected with the one time I did my laundry at his house using his detergent. His stinky, smells-like-him detergent that is in no way gentle or hypoallergenic (but oh, it smells like him). Now, I am not a vigilant after-sex peer (that's pee-er), especially after reading this post at the Women's Therapy Center. So it's not like that one UTI resulted from some aberrant behavior. No: I probably didn't pee after sex, probably didn't drink enough water, just like the rest of my life.

When I got UTIs as a toddler, they stopped only after my parents stopped giving me bubble baths. So I think this stinky-detergent connection is legitimate. It's hippie detergent for me on my undies, always and forever.

Which doesn't really bring me to the present. Lately, as Catfish has gotten busier putting himself to work rebuilding people's porches and hanging people's doors, our sex routine has slowed down. Pre-vulvodynia Esther would be jumping on him at every chance. Vulvodyniaed Esther is secretly relieved. I want to be the asserter like I've been in the past, but I just don't have it in me. I don't even care. Every romp is one part pleasure, three parts waiting for it to end. I enjoyed it before for the idea of having sex, imagining having sex while I was having it. Now it just hurts and I don't want to abuse my body.

Catfish is thankfully the most understanding guy, the sweetest guy. His number-one thing is spooning. That we can do.

Tuesday, June 29, 2010

Out of the Effexor Coma

After a dozen weeks of smaller and smaller doses, I'm finally done with Effexor. Or "Side Effexor" as it's nicknamed -- because when you try to stop it, it gets jealous in a kind of mad-scientist way. Nausea, dizziness, ear aches, brain shivers -- but I did start pooping again.

I stopped the Effexor because it reduced my life to work, bed. I felt so exhausted every day that I wondered if I was physically ill. Sometimes I didn't have the energy to stand up or move an arm -- a weird feeling that we all describe at some point but that I had never experienced so convincingly.

So I'm out of my waking coma, and out of the stability it provided. It was awesome living without the constant irritability that I now see has plagued me since I was a kid. I have a new perspective on my mental illness -- I learned (again?) that no matter how many issues I conquer, the illness is still there perturbing me. And the illness is mostly about hypersensitivity. My senses overreact and make me irritable. I see that now, without Effexor, in the heat and the noise of the city, with all the little bits of things that collect on the floor every day and the dirty dishes and the sink that never seems to get clean, with neighbors slamming doors and the bright sun that won't go down. If I can find a med that smooths out my senses a bit, I think I'll feel much better. Effexor stabilized me and either doused my senses with sleep or smoothed them down directly, but it withdrew my life to do it, and that wasn't an acceptable solution.

I see my doc later this month, so we'll see what happens. I don't have insurance yet and the financial advisor sucks at her job and hasn't returned my handful of calls, so I may be pulling this one out of my own pocket. But my doc is worth it, and maybe the new med won't be $300 a month without insurance (or financial advice) like Effexor. I'm still on Trileptal, $45 a month at Target (elsewhere over $100).

My butt/hips/upper legs/lower back started whining more as I got to the end of my Effexor taper, and I haven't decided if that's because Effexor was helping the pain or because they really liked lying down as much as we did the past seven months. After six hours walking around at work yesterday and then sitting through a movie and dinner, my pelvis wanted to go on strike. Catfish told me I was limping; I'd thought I was only limping in my head. Those movie chairs are comfortable, but I was shifting every few minutes, trying to negotiate among all my body parts. Finally I balled my legs up to my chest despite my short skirt, despite the many children at Toy Story 3, thankful for the darkness.

A friend (who has Celiac -- coincidence?) linked me to this site about Hip FAI, which she recently discovered she has. When I manage to get insurance again, I'll ask about it. My mom's hip problem seems so far to be an increased dose of arthritis in her right hip. Maybe that plus my dad's spinal stenosis explains my problems? I'm still gun-shy about doctors -- I'm not convinced I can get anyone to care, so I sit around feeling like I'm rotting or maybe just aging too quickly. But I know I'll beat down doors again when I have the #!$*ing $$$ to do so.

Monday, June 21, 2010

Getting Gimpy in the Hippy

I've written before about my right hip -- mild pain, less flexible than the left one. It never bothered me enough to take it to a doctor even though I've read that in vulvodynia, hips and vulvas often go hand in hand. I figured it would be another wild-goose chase, another series of tunnel-vision docs.

Lately, however, the pain is worse, and I seem to lose some strength in my leg when it's in certain positions relative to my torso. It's also poking me in more places, spreading from just the inside of my hip to the outside and my butt and my lower back and my thigh...maybe out of compensating for it all day. The pain still isn't very bad and I might not even care if it weren't for that thing next door that's been whining at me for almost four years.

Then I was talking to my mom about my symptoms, and voila, she has the exact same issues with her hip. She actually went to the doctor for hers last week -- no results yet, but they did some x-rays and strength tests and I hate to say it but I'm really hoping they find something wrong with my mom....

Oh Mommy, No Mommy! But if she can get doctors to help her, maybe I can go to those exact same doctors and say the exact same things and get them to help me too. And then we'll both feel better and do cartwheels, or cartwheels and the 57-year-old-with-arthritis equivalent of cartwheels.

The pain with sitting has also gotten worse -- right below my tailbone ramming up into my spine. Thankfully, as a waitress, I don't do a lot of sitting during the day and can forget about it most of the time, but all the unforgiving chairs of the world have taught me that any career change will come with a butt donut.

(And if any more people tell me it hurts to sit because I'm too skinny, I am going to measure the volume of my butt via displacement and pour an equal amount of liquefied donkey farts over their heads. Not their collective heads -- one by one.)

Obviously I do need to see a doctor, but I don't have health insurance (and the county hospital is not the solution), so I'm working on solving that problem. I'm thinking if nothing results from my mom's visit, I'll start with the physical therapist I was seeing to get her recommendation and go from there. Or I'll camp myself in front of the Cleveland Clinic with a giant neon posterboard presentation of my journey through vulvodynia...ooooh, maybe I'll make a 3-D journey into a posterboard vagina...into the pleasure-dome...

Anyway, if anyone has any thoughts about my symptoms, please let me know. I know a couple of the bloggers I read have been diagnosed with either hip problems or pudendal neuralgia, so I've got those two on my list. The strange and lucky thing is that the hip and butt pain have inspired a feeling of greater control over my vulvodynia rather than a feeling of being burdened by it. There is so much more hope against chronic pain when an actual cause comes into likelihood.

Thursday, May 13, 2010

Our Lady of Perpetual Orgasm

My clit woke me up the other night, but not with its usual sear. Instead, it was three-quarters of its way to orgasm, and it had gotten there all by itself.

I've often wondered why the mechanism that agitates our coochies causes us pain and not pleasure. Why would over-excited nerves be unhappy? Shouldn't they just as likely be supremely happy? Are there women running around with suspicious smiles on their faces all day long?

Pain and pleasure are all in the mind, as they say. Science tells us that it's our brains, not our coochies, that decide if our vulvar fauna is butterfly or pirahna. Spiritual masters say it too -- says the book Yoga: The Greater Tradition by David Frawley, "If we learn to witness the conditions of body and mind, whether painful or pleasurable, and not identify them as our own, we can go beyond all suffering."

I've been working on that, sort of, in a passive, silent way. Ever since I started my bipolar cocktail of Trileptal and Effexor last November, the vulvodynia's been off to the side. I've got more levity in general, which counteracts the downward pull of the pain most of the time. So instead of confronting the vulvodynia head on like I used to, beating my head against it and jamming my spine down its length, I deal with it more distantly, in a quieter way.

It's a feat of good brain meds more than anything; I'm not a yogi, and I'm not any closer to enlightenment than I was before. Being on good meds has helped me realize how important it is to have a steady mental state in order to make any strides against chronic pain. Note it, ladies! If you are down in the dumps and you have the means, go get some medical pep. If you don't have the means, find them. Go to your county hospital and wait in line to see someone. Pester a pharmaceutical company to help you out. Make someone who loves you do it for you. It'll be worth the trouble.

And remember stuff like this: any moment we escape the pain and focus on something else, we win. We squash the pain out of existence -- when we laugh at the TV, when we get lost staring at the rain, when we sleep soundly, when we take a moment to admire an ingenious pair of pants that won't creep up the cave. Sometimes it can feel like staying aflutter above a fire, grasping for whatever distracts us. But sometimes the pain is only a shadow, and we hardly notice it's there.

If, as I quoted above, we can accept that our vulvas are not equivalent to ourselves, that our pain is separate from our being -- our being, inviolable, beyond reach of any earthly disturbance and stronger and more permanent than all the earth -- that's when we win a much bigger struggle, the war to each moment's battle.

For me it's a slippery concept, hopping in and out of my brain: whatever I am, being or soul or breath of ether, I transcend this body and all of the incidental things that happen to it in this lifetime. I understand it best via existentialism -- whatever happens to me could've just as easily happened to someone else, and what happens to someone else could've just as easily happened to me. All of the bad things are interchangeable, as are the good things, all the way down to the bad and the good we are born with -- and because of that and because we rely on each other to live in this world, we share everything we have. If everything is truly incident, accident of circumstance, the only thing that defines us is what we are before all of the incidents occur: beautiful, pure consciousness, one by one brought to be here together.

I know how hard it is to hang on to that concept when you hurt or when you're depressed. When I'm depressed, I lose my lucidity, and I can't think past the current emotion or the current pain. I can't remember feeling better, and I can't imagine I will ever feel better again. The best I can do, after years of working at it, is resist judging my present thoughts and let them pass without indulging them too much. I avoid stirring the fire. I just let it smolder as it is until it puts itself out -- which, days or weeks or months later, it always has.

Because, in the long view, nothing is perpetual. We may have pain until we die -- we can't know -- but our view of it will change. It makes us grow, makes us deeper, tries to make us yogis or monks or something more patient. It can feel like breaking, but eventually the journey becomes one of will rather than one of resistance. That's how mine has gone, anyway.

Catfish Sandwich

Volvo Shop

If only!

Friday, March 19, 2010

Lack of Substance

I realize that ever since I got on good brain meds and started feeling better mentally, my posts have basically consisted of sex stories and pictures of stuff that you might find funny if you're Beavis or Butthead or me. So depression is good for something -- deep blog posts.

But I feel like I've left my readers in the lurch. It's not that I have nothing to say; it's that vulvodynia is no longer the center of my life so I'm not running to my blog to report my thoughts all the time. That doesn't mean I'm not thinking about it, though. Today I went for a hike in my favorite forest preserve and came across this site:

Last time I was there, everything in that photo was laden with ivy leaves. In total there's about a quarter acre in those woods where the ivy has run wild, climbing all the way up the trees and weaving itself across branches and over the path. I remember standing there late last summer under it all wishing I could stay there forever. It was after one bad doctor's appointment or another and I was so frustrated and devastated that I thought with just a little more internal steam I might slither right out of my skin and start over. The ivy was lying over a short tree in a way that made it look like a witch, and her ankles were thin and she had red eyes, and all I could think was how feeble magic looked to me anymore. But I still felt like begging her for a cure.

I can't believe how much has changed for me internally in just eight or nine months. I feel very lucky, and I also feel like everything I've gone through can really help other people. So it's my aim now to write from my new perspective with hope that it will help some of you out there as you try to cope with vulvodynia and move forward with your lives. Ours is a pretty lonely disease, so once we find each other we've got to stick together.

Minute Man or Hora Hombre?

Monday, March 15, 2010

What Catfish Arms Look Like

Everyone keeps asking me what forearms like catfish look like. Well, let me tell you a little story, as I remember it.

When I was a tween or so, my dad, my brother and I often went fishing with my grandpa when we were in town. One of those trips took us to the bank of a river. I remember grandpa fishing from the ground, leaning back against a rock with his failing legs stretched out in front of him. He hooked something in the river and reeled it up -- a catfish no longer than a foot. It looked like a dinky thing to me given how big catfish can get, but he pulled it off the hook and held it in his fist for a second. "Nice fish," he said, and then lobbed it back into the water like a football.

I don't think anyone else there remembers that catch, but I do because I wondered how the catfish must've felt in grandpa's hand -- all those muscles in their exact design with their exact duties, all that tissue existing only for a present-moment purpose, the cylinder fish alien against all my bluegill hauls... Apparently I've been thinking about that fish for almost twenty years because when I wrap my fist around Catfish's forearm, I think of grandpa's catch.

Granted, perspective is in his arm's favor here. Popeye! But he IS in the process of working up to doing a pull-up with me hanging on him. He says by April 1, but we'll see.

I've worked up to 2 chin-ups -- palms facing in. 1.5 pull-ups, palms away. My goal is to do more chin-ups than Linda Hamilton does in Terminator 2.

While I'm photo sharing -- here's a coffee mug we got in at work the other day:

Apparently my mind's always in the wrong place, but when I gave my co-workers a second to think about it they saw it too. Dante (aka The Danté!) asked to pose with the cup:

If anyone wants this cup I will snag it for you. I wanted to gift it to someone who would appreciate it because I find it so special but I figure it deserves a few trips around the restaurant before moving forward to a private collection.

Thursday, March 4, 2010

Can't Get Over It

I keep ordering mussels. Any idea why?

This pic sucks because I'm trying to be surreptitious. I'm alone in a bar. My co-worker and I already had our post-work two and she left. But I was feeling the clamshell call. (Need to be alliterative surpasses need for accuracy.)

Another Type of Man

Wednesday, March 3, 2010

Sleeping with Catfish

The guy I've been seeing has forearms that are like catfish, so I've been calling him "Catfish" to people who don't know him. I think I'll start calling him that here.

Catfish and I have been trying to have sex. Actually, we've succeeded several times at having sex -- I say "trying" because each time feels like a flip of the coin, "will sex be possible again." It hasn't been something I haven't been able to do, but I've come close to abandoning the mission before it's complete.

When we start, the pain around the opening of my vajayjay is excruciating to varying degrees, sometimes breathlessly, sometimes more of a wince. It's always subsided after a few minutes, so I hang in there. He caught on quick and we go slow until the pain lets up and we can get moving.

Then there's the problem of going too long. If we have an extended round, I start to feel a different kind of pain -- my abdomen, and also a soreness around my groin. I figure it could be muscular, since in theory those muscles are bound up all the time, but whatever it is it makes me fizzle prematurely and I just try to hang on till the ride's over.

The pain during the day is another story completely. Up until about a week ago, it was unbelievable. I was at a 9 constantly -- and whenever I get up above 8 or so, I realize that my pain scale is actually a hyperbola and the increments start stretching as the numbers go up. I consider 10 to be pain that I can't not cry about. The 9 I was feeling for a few weeks -- including that day I posted from the toilet -- is a 10 minus the inability to function. 8 is loud burning that distracts me every so often.

So I sat on that 9 all day for a couple weeks, including through the misery of my period, constantly convincing myself that I didn't have a bladder infection. (I didn't, somehow, but my pee was like a serrated knife.) And each night I'd get into bed and feel like I couldn't possibly have sex again. Well, one fabulous thing about this guy is that some nights we just cuddle. (Drool.) And a couple nights I diverted the sex to other activities as the pain was too scary. But there were a few times where I thought, no way, no way, and then I tried anyway and was able to fight through the pain and have a good time.

That taught me a huge lesson. I realized that no matter what, my pain is not a mandate on my actions. I can do whatever the hell I want! If I were paralyzed, I would NOT be able to move my legs -- it wouldn't be my CHOICE. But with pain, what I do IS my choice. I may not function exactly as I would without the pain, but I can still function.

I do have to be more careful than I have been in the past, obviously. I seem to get tender externally more easily, and I've noticed some bleeding when he involves his fingers. And as I mentioned above, my vaginal stamina (HAHAHA) isn't what it used to be. But I'm so thankful that Catfish is a guy I actually WANT to keep seeing! Trying my vajayjay at regular sex and seeing that it's fit enough for parasex (like Paralympics...) has stoked my feelings of control over the situation.

Since about a week ago, the not-during-sex pain hasn't been that bad, and I think I figured out why: IT'S MY DAMN INTESTINES. I swear, I swear, I swear... Look, I'm a constipated kid to begin with, alright? And the medications I'm on for my bipolar head make me all the more stopped up. So I've been waging what would probably be a wiggly war against my gut, dropping kefir and kombucha and senna and probiotics on it along with movement-inducing foods in an effort to poop at least more often than every Tuesday. And I was in the middle of so much level-9 pain and suddenly, like the sunrise, there came two gigantic bowel movements in one day -- and my pain sunk back down to its usual 6 or so without a quibble. WHA???

I thought the pain was about the sex and that I could never have regular sex without being in level-9 pain my whole life. But apparently, that's not how it works. Can I get a Hallelujah?

I have been eating like an idiot because my schedule's so messed up being around this guy all the time and going out so much. But I need to stop it. There is no reason for me to eat like I have been, risking glutenings and dropping Reese's cups like they're, well, Reese's cups. I hate Reese's almost as much as I hate that maker of the universe's cutest but cheapest but most ununbuyable shoes, Steve Madden. I hate you, Steve Madden.

My message to you other v-girls is: IBS. The incidence of IBS among women with vulvodynia surveyed on is 50%. Fifty percent. That means half of all women reporting that they have vulvodynia also report IBS. WHAT! I'm sure I've mentioned this before, but I think that's ridiculous. It could be that some spasm disorder is affecting both our colon and our vulva, but something like that sounds extremely rare to me, and neither IBS and nor vulvodynia is a rare disease. I think it's more likely that for those of us with vulvodynia, the two are related with the hyper-reactive colon setting off nerve endings in the vulva.

Our diets are crap, you know. High incidence of IBS? BECAUSE OUR DIETS ARE CRAP. It's no genetic disorder, birth defect, nerve disease... It's because we weren't made to consume Mountain Dew and Shamrock Shakes while excluding everything else that's green.

So I am going to put my foot down. On my hand. And my wallet. And Catfish's fork. So I can't eat anything I shouldn't. Yeah. Twister in the refrigerator.

Tuesday, February 23, 2010

Monday, February 22, 2010

You Sure It Isn't Psychosomatic?

Suggesting that vulvar pain is due to sexual issues is like saying back pain is due to moral issues.

Your back hurts? Must be because you're not an upstanding citizen. Maybe it's the red light you ran, the tax return you fudged, the friend you left lying there all dusty in your closet who's become a sting in your spine.

An organ's main function needn't be its dysfunction. No organ's main function is to grow cancer. Celiac intestines aren't suicidal about having to digest.

So why is it that a pained vulva means a woman has a problem with sex?

Way too many men have suggested so to me -- and I'm sure at least some of them said it because they thought I might have a revelation and suddenly be willing to screw them. Or because I might try that age-old vulvodynia cure of having more sex. You know, the one that doctors mention right off the bat and write about like crazy in medical journals.

Not a single woman has suggested to me that my pain is due to sexual issues. And there's the empathy schism. Another woman may not be able to imagine chronic vulvar pain, but she doesn't have a problem believing it's possible, and that it's possible free of psychosomatic root.

Why do guys think we're afraid of the dong?

Why can't we be into the dong but not into THEIRS?

A guy at work asked me if I won't date him because he's black. I told him of course not. His response: "What's the problem, then?"


The guys who have called my pain psychosomatic are (almost) all complete lame-o's compared to me sexually and would be the ones in pain if sex pain actually worked that way. Lack of confidence, compensation, body issues, fear of intimacy, fear of love, general hey-how-big-is-my-penis obsessions...

We all have our issues, yes. I have some, though I'm not always sure of what they are. The key thing is that I have always believed myself to be a sex goddess. I don't have an explanation for that belief, and I don't really have evidence besides whatever sings in my hips. I've always liked sex and always felt comfortable with it. Some friends and I have based our entire inside-joke repertoire around sex, including the friend with whom I'm planning a tropical island swarming with naked men and centered on a penis visible from space...

I like sex so much that vulvodynia has made atheist me wonder whether there really is a god -- that vengeful Christian god whose morals I must've offended with my pagan celebration. I masturbated too much! Someone's interpretation of the Bible was right!

To suggest that my pain is due to my psychology and not my biology -- at first it bothered me, and then I realized what a fabulous private world I have that these guys can never touch. That some may never approach in all their earthly years. It's a painting versus art: some never learn the difference.

One already knew it.

We've slept apart three nights since our first date two weeks ago. I'm not a dater, dudes. I'd say I don't know what's going on, but I do.