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.