I’m Not Dead

Hello internet denizens. Once again, I have slipped into a pattern of using work/family/friends/holidays/hobbies/whatever as an excuse to avoid confronting my vulvar demons.

No excessive stories for this post; it’s already 11pm and I have to be at work at 9am tomorrow. But I wanted to update this blog as not only a shout-out to those who have read these little excerpts of my story (and, hopefully, found bits of wisdom or comfort in them), but also as a reminder to myself that people need this blog to keep going. Women just beginning their treatments need a voice of experience to steady their resolve. Women who feel as though they have nowhere to turn need someone to talk to, to listen to, to share in their individual stories and their communal struggles. And I need this blog, as a reminder of all that I have done, all I want to achieve.

I always think that they post needs to somehow be brilliant and inspiring, but really, what I need is to JUST WRITE SOMETHING. Anything.

. . .

I dilated for fifteen minutes today. It was utterly uneventful. It took me a couple minutes to get the dilator in, and a couple more minutes to get it in all the way. Eventually, after a combination of relaxing exercises and letting my mind wander to mundane places, it got comfortable enough to slide up and down at a decent speed. Nowhere near the jack-hammer speed depicted in today’s most prominent porn though. (Does anyone ever have sex at that speed anyway? It looks thoroughly unpleasant). It was mostly quite boring, really. I felt rather sore for about a half hour afterward. After I was done I ate an English muffin and went to work.

. . .

There. Something happened. No epiphanies for me today, but at least I can look back and say, “I got this done.” This is the first step towards conquering that which has done me even more wrong than the pain of vaginismus and vulvodynia combined… The pain of my own fears and anxieties. They are, after all, my “root.” Overcoming vaginismus requires overcoming my fear of sex. I cannot do one without the other. And my fear, in this case, comes from that which is unknown. Intercourse is largely unknown for me, thus I fear it. So to overcome this, I need to make it known… I need for it to become normal. Perhaps even routine. And a day where dilating is uneventful may actually be a step forward, even if I didn’t break any of my dilating “high scores.” It’s another step towards normalizing sex.

I just need to keep walking.

Health Insurance, and other reasons for crying into my pillow at night.

So I had this bright idea that when I moved to a new city, settled into a new house and got a new job, that I would somehow magically transform into a diligent dilator (as in one who dilates, not the object used for said dilating… English is weird), overcome my issues and blossom into a sexual goddess within a few months.

Ha. Ha. Ha. And also, HA.

The sarcasm and pessimism are nearly brimming over, I know. It’s hard not to right now. Lemme explain.

So, when Husband and I moved, we had to change our health insurance to a new provider, because our previous one was local to the city we moved from. This plan was fantastic; they approved the lidocaine and Botox injections with no fuss, and covered 100% of the procedures. All I ever had to pay were copays for my pre- and post-ops. Give them a gold star… No, a THOUSAND. Amazing plan.

I was quite sad about having to move off this insurance, but my husband did some very thorough research into our new options and found a new plan. Not as good, but they had an option for continuing care coverage for three months, and they agreed to cover 80% of approved procedures. Okay, so that’ll be a couple hundred for my last Botox shot, then. Sucks, but we’ve got the savings. We can penny-pinch for a little while.

So I get my pre-op and my appointment for the next (third, if you’re counting) Botox shot. If all goes well, this should be the last. Specialist Doctor knows exactly which areas still have a spasm (between 4:00 and 7:00, if you’re curious) and is going to concentrate there. Awesomesauce! My next Botox shot is scheduled for October 23rd. I’m psyched, I request the day off work, all is well.

… Then, a couple days later, I get a call from Specialist Doctor’s office. I’m driving to work, so I don’t answer, but I listen to the voicemail a few minutes later…

“I’m sorry, but your insurance company has denied to authorize the procedure. Please call us to discuss your options.”

… FUCK. FUCK. FUCK.

Since then, my husband (saint that he is) has made several calls back and forth, first between the insurance liaison at Specialist Doctor’s office, then between several layers of help desk representatives with our new insurance company. And from this we have learned that,

A. They lied in their coverage brochure. The brochure claims that continuing care will be provided for new members who need to see a specialist out-of-network to close their care. The help desk representative claimed that continuing care only applies to current members when their doctor moves out of networks. LIARS. FUCKING LIARS.

B. They refuse to cover Botox as a vaginismus treatment at all. And because it isn’t an FDA-approved procedure, there’s basically no recourse.

The next step, and thank the universe for him, is for Specialist Doctor himself to get involved. If the person who made the decision to deny us isn’t convinced by our appeal, SD will call that person and explain the medical reasons and necessity for it, in an effort to change their mind.

… But that’s basically the only option left. If that fails, if I want to get my last shot, it will cost over a thousand dollars. I don’t know about you, but I don’t have thousands of dollars lying around for casual use… We have student loans, car loans, bills, a mortgage. Where is this money going to come from?

And WHY THE HELL are we paying hundreds upon hundreds of dollars a year for a health plan that LIES and refuses to cover me?

I don’t know where we’re going to go from here. But from this vantage point, hope is a bit of a scarce resource right now. I have an appointment with Specialist Doctor next Friday, a pre-op. But since he’s now out of network, even going in for a pre-op costs sixty bucks, and the gas to get there and back is another twenty… Why should I go if I might not even be able to get my next shot? Can I even keep seeing him at this rate at all? I moved to a comparatively small city, and there are no equivalent specialists here… I’m beginning to wonder if maybe my road of treatment has finally been blocked off, and I’m now stuck with nowhere to go, no sense of direction, no idea what my next step should even be.

Should I dilate more? I dilated for months, YEARS and still can’t bridge #7 (and by the way, my husband is larger than #8, which I don’t even have). Should I abuse the EMLA? Specialist Doctor told me that it should be a short-term solution, because long-term use can cause heart problems. (And besides, the perpetual stinging for hours afterward isn’t something I can deal with after every romp in the hay anyway.) What about the vulvodynia then? Just keep using lidocaine until it runs out? Then how do I renew my prescription? I’ll need to see a new doctor… Does this mean I need to restart the finding-a-sympathetic-gyno process all over again? I’ve already sat through years of “You’ll just have to get over it” and “Well, just relax and have a glass of wine” and “There’s nothing physically wrong with you” . . .

I’ve been trying to be a voice of reason and hope to my readers, but honestly, I think this time I may need that from you. If any of you have some success stories to share, no matter how small, now would be an excellent time to contribute… You’ll have at least one member in your captive audience.

Return from Inaction

When I go for months without updating this blog, I feel like I need to have something profound to say. Like I need to have a good progress report or amazing insight that will overshadow the fact that I really, really suck at being consistent.

This inconsistency is hurting me in my vaginismus/vulvodynia treatments, too. I was supposed to be doing daily Kegel exercises throughout my physical therapy sessions; the Kegels generally only happened a few days before the next appointment, much like how many people only floss their teeth the night before a dentist appointment. (In case you’re wondering, yes, I’m guilty of that too.) I also never finished using the Anusol, and probably never once managed to take it two days in a row, so who knows if that ever had an effect.

So what, then, can I say?

I can safely say that the Botox injections have helped the vaginismus enormously. I’ve had two injections now; the second was nearly identical to the first. They put me in monitored anesthesia for it, so I never had any pain from the procedure. The worst pain was from getting the IV put in. (And that was a real bitch, I might add; the nurse stuck in the needle in, fished around for a while, couldn’t find a vein, then had to pull it out and redo it. Yegh.) I was maybe a teeny bit sore for a couple days afterwards, but nothing that merited taking any pain meds. And I can tell the muscles are frozen now, which is absolutely fabulous. I still expect spasms from dilating sometimes, but they just… never get there. It’s marvellous. Sometimes I can almost forget that I even have a dilator in at all, if it’s a small one. That’s something to celebrate!

But my celebration over conquering vaginismus is overshadowed by the fact that I’ve still got vulvodynia, and nothing, so far, as been the miracle cure. Lidocaine helps for a few minutes, but the stinging always comes back. Injecting Botox into the hymenal ring had no effect.

Now, I’m using EMLA cream, a compound prescription made of 2.5% lidocaine and 2.5% prilocaine. My current relationship with EMLA is… complicated. A constantly shifting moodiness that oscillates between amazement and frustration. I’ll explain.

On the directions, it says to apply 30 minutes before dilating, and that the numbing effect will last for several hours. Sounds awesome, right? So I apply it 30 minutes before dilating, and for those 30 minutes, I feel peachy. Rather numb, but otherwise good. No stinging at all. Then I start dilating, and I get through a few minutes before, lo and behold, the stinging and burning comes galloping back. Fabulous.

So today, I use it differently. I apply it (a big fat glob of it, as much as I can possibly fit on the end of a Q-tip), and then start dilating immediately. There’s no stinging, and for the first thirty minutes, I am in heaven. My vagina has become as numb as a mouth full of Novocaine, and each dilator slides in with only a little bit of initial resistance. #5, #6, even that infuriating purple bastard #7, slid in, and the stinging and burning was just… GONE.

I was so excited, I started fantasizing. I imagined texting my closest friends and saying, “Hey, we’re going to Victoria’s Secret, NOW. SEXY SHOPPING SPREE FOR EVERYONE!” I imagined greeting my husband in this lovely navy-blue lingerie I own but have never worn, and dragging him into bed, whereupon we’d try every single position I’d heard of but never could do. Missionary! Cowgirl! Doggy style! Butterfly! Wheelbarrow! (Yes, Wheelbarrow is a real position, but no, I do not have the dexterity – sexterity? – to try it.)

About twenty minutes into it, I started feeling some irritation again. It felt like a bit of rug burn around 4:00-6:00. I figured it couldn’t hurt to apply a bit more; maybe I just hadn’t put on enough the first time.

No, the problem wasn’t the EMLA wearing off, because when I put on more, it just started stinging worse. It felt like I had torn something around 6:00… and when I dabbed a Q-tip around there, yep, it came away with a little smear of bright-red blood on it. Dammit. (How could I have even torn anything up there? I don’t have a hymen anymore, and dilating #7 is only about 1.25″ in diameter. It’s not like I was sticking a broomstick handle up there.)

And now, it’s about three hours since this little experiment, and guess what? My vulva STILL STINGS. It’s been stinging and burning ever since this incident, even after a shower. (In fact, the shower made it worse.) According to the package directions and its Wikipedia entry, EMLA has a numbing effect that lasts at least two hours… I am not convinced.

Maybe this is just me essentially going through “first sex,” as my body has never really had a dilator this size in it before, and the bleeding is similar to what women everywhere experience during their first couple sexual encounters. Does it sting afterward for them too? I don’t know, I never really thought to ask. I’m hoping that’s what it is… But the last time I mentioned bleeding a little from using the dilators to Specialist Doctor, it made him nervous, nervous enough to want to test for lichen planus. (By the way, he did a biopsy during the second injection, but I never got a call about the results. I’m presuming that means they found nothing. Again.)

In any case, I’m seeing Specialist Doctor for a follow-up tomorrow. (That would be why I was actually dilating today. :P) Maybe he’ll have the clever insight and path of action that I currently lack. Or maybe he’ll just sigh and say something like, “We’ll just have to try some other options,” which in doctor-speak means “I have no fucking clue how to fix you, you’re truly broken and nothing I can do will ever make intercourse anywhere near comfortable for you, let alone fun or spontaneous. You might as tell divorce your husband now to save him from a life of lousy blowjobs and empty promises.”

Guess I’m not feeling too hopeful today. Maybe tomorrow will be better.