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.

Lichen Planus, or “Can Anything Else Possibly Go Wrong With My Vagina?”

I had my follow-up appointment with Specialist Doctor this morning. I’ve gotten quite accustomed to the routine by now: Sign in. Validate parking pass. Get blood pressure reading. Step on scale. Enter exam room. Answer the assistant’s questions from her clipboard. Undress from the waist down. Cover self in flimsy paper sheet. Wait for Specialist Doctor. All normal.

So he comes in, female nurse in tow, and asks how I’m doing. I say that I can tell the Botox has frozen some of the inner muscles, but I’m still getting pain around the entrance, a kind of stretching pain. He frowns; this should not be happening.

“How about I check down there and see if I notice anything unusual?” He puts on gloves, and jokes around with the nurse, complaining that the other doctor switches up the brands too much. Probably trying to make me relax a little. He readies his finger, I brace myself for impact–

AUUUGGH. The sting is still there. All around the entrance I’m burning, even though I used more lidocaine before coming in.

“When we did the Botox, I injected a few units near the surface, around the hymenal ring. There’s some studies out there testing Botox’s effectiveness for vulvodynia.” He touches the hymenal ring. It stings. “But that doesn’t seem to have helped.”

More poking around. He’s hitting all the sensitive spots. I groan, twitch, spazz my legs.

“I’m seeing inflammation in here,” he says. “Let me check and see…” He starts doing the poke test. “I’m thinking here–”

OW!

“And here–”

FUCK!

“Yeah, that’s a painful one,” I say through gritted teeth. It’s like he just stuck his finger in an open wound.

After that, he has me do a Kegel test, then slowly inserts his finger deeper. “Okay, so I’m guessing you still have some stiffness — here?”

Yup. His finger’s about three inches in and it feels like he hit the same wall I was hitting earlier. So… it’s not supposed to be stiff there?

Apparently not. Those muscles are another part of the PC muscles, and these ones weren’t frozen by the Botox. Between one and three inches in, I’m golden, but 3+ is still immovable.

“For your next injection, we’re going to go in deeper,” he says, “And inject those internal muscles as well.” He pokes them. They twinge a little, and don’t move. So I guess I’m getting another round after all. No magic cure here.

And what’s going on at the surface, anyway? Is that the vulvodynia?

“I’m thinking you might have lichen planus,” he says, after finishing the exam. “It’s a type of skin inflammation. Normally we don’t see it in women your age, so I didn’t even think to check for it earlier.”

I sigh. “Well, it wouldn’t exactly surprise me to find something else wrong down there.”

He laughs a little, because, well, what else can you do when you realize your patient has no less than three different vulvo-vaginal disorders?

“I’m going to give you a prescription for a steroid,” he says. “A vaginal suppository. Use it for two weeks, and see if you notice any difference. We’ll do another Botox injection in three months, and I’m going to take a biopsy for lichen planus then too.”

He leans back and sighs. “We’ve tried lots of things, but nothing seems to be the ‘straw that broke the camel’s back,’ is it?”

When Specialist Doctor first saw me, he told me that the treatment path would be long, but it would succeed. “We ARE going to make you better,” he said, a year ago. But not this time. This time it’s “We’re going to try a few more things, see how they interact.”

Is that doctor-speak for “I have no idea if this will work, and maybe you’ll always be in pain, for the rest of your life”? Is this “Sex is just never going to work for you, you’re too defective even for me to fix”? If the doctor who specializes in urogynecology disorders can’t fix me… Where else do I go?

Now, I’ve done some research about lichen planus since I got home. It’s chronic, and difficult to treat; steroids are usually the first, and often only, option. On the plus side, it usually goes away within 18 months… But when it comes to vulvo-vaginal disorders, “usually” tends not to apply to me. And sometimes, lichen planus can turn malignant. Cancerous. It’s pretty rare, but when he mentioned taking a biopsy, I couldn’t help but wonder if he’s not only looking for a diagnosis but also making sure I don’t have cancer too.

I was so hopeful, for a brief little moment last night. I was really hoping I might soon be relieved of the dishonorable rank of Defective Woman.

Guess I’ve still got a few more battles to fight.

Vaginismus vs. Botox, Round Two

Oh goodness. So much has happened on the vagina front over the last 24 hours. I’m not even sure where to begin. I guess I’ll have to make this a two-parter.

So after another week or so of avoiding dilating (I’m the world’s most noncompliant patient… I’m aamzed Specialist Doctor puts up with me sometimes…), I gave it another go last night. I started with #6; I usually start with #5, but this time I was feeling a little euphoric and wanted to have my “magic moment” wherein I discover the Botox has kicked into full gear and all my pain is blissfully vanished.

Ha, no. It still took me several minutes to get #6 in, and when I did, I still got that rugburny stretching sensation, even after slathering myself in lidocaine. It felt like the skin was being pulled thin, like grabbing the sides of your mouth and yanking them apart, like I might tear at the edges if I pushed too far. But like before, after a couple minutes, my body acclimated to the dilator and the stretching began to subside.

And throughout this, I got so annoyed by the entrance pain that I hardly noticed… the internal pain was GONE. Just gone. Once the stretching pain subsided, I could barely feel the dilator in me at all! I could push it in around three inches and hardly notice. It was like the entire area had been numbed with a local anesthetic; I knew something was digging around in there, and poking in places that normally would scream and bite back, but the pain receptors were just off duty.

HELLZ YES!

#7 was a similar story. Again… burning, stretching, pulling… but only at the surface. Again, after about ten minutes, the surface pain completely subsided (after another round of lidocaine, that is), and I could insert #7 in halfway with no problems at all! BOTOX FOR THE WIN!

However, I did notice that, after getting in about three inches, the dilator would just… stop. I was hitting a wall again. I had no idea if that was simply where my vagina ended or what. Maybe mine happens to be extremely short? One of my previous gynos had commented that my vagina was “small”… maybe that meant I just have a short and narrow passageway in there.

Sadly, that’s not what Specialist Doctor thinks. Apparently I’ve still got further to go… And I’ve hit another big snag along the way. Part Two to debut shortly.

Vaginismus, Botox, and… Bladder Control?

I’m beginning to notice a new side effect from the Botox. It’s not a huge deal, but it is mildly annoying; I’m beginning to need to pee more often, and the need is more urgent. I’m probably going twice as often as I did before the Botox, even though I’m not drinking any more than I used to.

I suppose this makes sense; now that the PC muscles are frozen, the ones that clench to hold the bladder in place, and keep it from relaxing/leaking, aren’t able to perform that function as well. And like I said above, it’s really just a minor inconvenience; I haven’t had any actual incontinence yet.

It does make me a little sad though; I used to pride myself on my Iron Bladder. When I was in high school, I could hold it through the entire day, 7am to 3pm, without needing to go. And when I worked in retail up to a few months ago, my shifts were often up to 6 hours long and I never needed to use the restroom there. (Unless I drank a Frappucino on my shift. Nothing holds those in.)

But yes, now I’m probably going every 3-4 hours, maybe. So definitely a change from before. But as long as it stays this way, that’s still under the realm of “normal.” In fact, maybe it’s more normal than before; I bet the reason I could get through a shift without using the restroom was BECAUSE all those PC muscles were always tense.

I wonder… Are there other vaginismus sufferers out there who’ve noticed something similar? Who are able to avoid the restroom for 7-8 hours at a time? Everything is connected, and I wonder if these two things (vaginismus and bladder control) are connected as well.

If you’ve got any thoughts on this, comment below and let me know!

Vaginismus Vs. Botox, Round 1

Welp, I can’t avoid the dilators forever, now can I?

Admittedly, I was really dreading using them for the first time post-Botox. I’ve heard so many conflicting things, all from supposedly reputable sources:

I’ve watched YouTube testimonies from women who (tearfully) claim that one injection cured them of years of suffering. And the internet also provides me with statistics that border on miraculous: some would say up to 95% of women didn’t need more than one injection.

But from my doctor, I hear that most people need maybe 3-4 injections before they can successfully manage. And even then, his optimism is always cautious, always considering the next step. But I don’t even know what the next step beyond Botox IS. Is this doesn’t work… Where do I go from here? Is there even anywhere to go? Will another shot help, or am I then destined to a life of sexual dryness, topped with potential incontinence? (Which, by the way, I have not experienced yet.)

So with these contradictory ideas in my head, I’ve been avoiding dilating for two weeks. But I’m off my period, so no need to fear bedsheet stains or exacerbated vulvodynia. And the Botox begins to work after about a week, so I should already be feeling the effects. Nothing left for it but to do it.

So I did it. I spent an hour with my dilators today. Results?

I’d say they were mixed… rolling up and down… but ending very well.

I started with Dilator #5. (It’s the fifth one in the Soul Source dilator set. 3.5″ in circumference.) After applying my lidocaine, I tried to slide it in… And aside from the usual stinging at the entrance, it didn’t want to budge. So, naturally, I panicked. The Botox has done nothing! It sealed my vagina shut! I’m doomed to suffer with vaginismus forever!

But it turns out, everything feels… different after Botox. I don’t quite know how to explain it yet. The muscles are… stiffer. They don’t want to move. But despite feeling more rigid, when I apply some extra force to insert the dilator, they don’t instinctly SNAP shut like they used to. After a fair amount of stretching at the entrance, #5 slid in. And eventually, it even became almost comfortable.

#6 (3.9″ circumference) was a similar story. It didn’t want to go in at first, not even after a fair bit of pushing and adjusting angles. It took a while to get situated, and it took a fair amount of me remembering not to panic, not to start thinking up a plethora of doomsday scenarios to jolt my adrenaline and invoke that horrible clench that feels like a stab…

Yet amazingly, the clench never happened. For lack of a better way to put it, I felt like my muscles WANTED to, and tried, but never quite got there. They… twitched, I guess? But never snapped like a rubber band. I was always able to calm the muscles enough to get the dilator out without much pain.

(And in an odd side note, I felt a lot of “rearranging” of muscles and organs throughout this process, like my colon was being shifted to the back to make room for the dilator. It resulted in some… uh… extra pressure on the backdoor, and I briefly wondered whether the bedsheets would need immediate washing. But apparently not. I don’t know if that’s a common thing or what, but it went away once the dilators were out.)

However, #7 (4.5″ circumference), of course, proved to be a real challenge. It could get in an inch or so, but the STRETCHING! Augh! I felt like the skin at the entrance was stretched too thin and might tear if taken too far. Applying a second coat of lidocaine helped, but didn’t solve the problem; I even noticed a tinge of blood on the dilator. Clearly my hymen (which, if you recall, was too thick and needed a hymenectomy) wasn’t too happy about this.

So, what did solve the stretching problem? … The trusty C-ring, of course! I slipped that on the largest dilator and, after a few tries, it too slid in smoothly. And for the absolute first time EVER, #7, my largest dilator, felt comfortable.

Now, I don’t think Botox has solved all of my problems for me. I’m pretty sure I have a lubrication problem (getting aroused is not supposed to be PAINFUL pre-lube, I don’t think), I imagine I probably need to use some sort of moisturizer in conjunction with lube. (Pure Romance sells one here; haven’t tried it yet but probably will. Their lubricants work quite well for me.) The vulvodynia, of course, is always present, and thus I will still always need lidocaine prior to inserting anything. And I’m still not sure what the stretched feeling was about, and if it’s going to remain as stubborn when dilating in the future. Guess I’ll have to try again soon and find out.

Now the Botox won’t be up to its full strength for another week or two, so I’m hoping to have more hopeful updates coming out soon. But in the meantime, it seems to be helping. It’s not a miracle cure, but I’m hoping it will pack a hell of a punch.

Vaginismus, you will NOT be the boss of me…

Quick Botox Update (And Bonus Feature: “Story of a Wimp”)

Just a quick fly-by post to mention that I haven’t died from Botox Syndrome. (Yet.) It’s been a week since the procedure, and right now I’m feeling… well, exactly the same as I was prior to it. I’m not noticing any tension in my vagina, but I don’t really feel like I can relax it, either. Kegels are a little tougher to do than they were before, but I don’t notice much relaxation on the release.

I should have some form of dilating update… However, I’ve been on Shark Week for the last few days (that’s advice columnist Dan Savage’s term for being on my period, and I’m rather fond of it) and thus avoiding the little silicone bastards. Again.

But give me 3-4 days and I will have absolutely no excuse not to dilate, so… If I haven’t posted again by the start of next week, hound me! I need someone to kick me into being accountable. Plus, I have a follow-up appointment with Specialist Doctor on the 18th, so I will need to have something positive to report to him. Otherwise he might call me a wimp again.

… Did I not mention that before? Guess it’s storytime after all.

Now, Specialist Doctor has been the best doctor I’ve seen about my vaginismus and vulvodynia. He is knowledgeable and compassionate, and very determined to have me thinking positively and truly believing I can beat this. His treatments are aggressive but necessary, done methodically, and I really think I’d be much worse off if he weren’t holding me accountable.

However, being a pelvic medicine specialist, he has hundreds of patients, and as such, appointments with him are short and brusque. Often he’s running late, sometimes an hour or more, and when that happens, the stress starts to show. He’s never been mean to me, but I know that sometimes I’ve become another box to check off on the list before he can go home.

The time that stood out to me the most was on my pre-Botox appointment, when we were evaluating how well the Elavil worked. He asked me if I’d attempted intercourse yet; I said no. And he responded, “That’s a little wimpy, don’t you think?”

My response was the only actually wimpy part. I said something vague about not wanting to exacerbate the vaginismus by attempting intercourse before I was ready. And to his credit, he seemed to agree with me, or at least believe I was being reasonable. The conversation went on like usual, he outlined his Botox treatment plan, and all was well.

But what I wanted to say to him, at that precise moment when that word “wimpy” slipped out of his mouth, was something along the lines of: “Hey, you try shoving a dildo the size of a penis up your ass before you’ve stretched it out, and see how THAT feels!”

Obviously, I didn’t actually say that, because, well, I’m an adult, and hoping to move past my rebellious teenager phase. But I do think, in the most literal sense, it’s a valid point. Anal intercourse, when not adequately prepared for, can be as unpleasant of an experience as vaginismus; it requires lots of lubricant, gradual stretching, and patience from both partners to even be comfortable, let alone pleasurable. (And honestly, I cannot fathom how that could ever be even remotely comfortable. But, I also can’t fathom how vaginal intercourse could be comfortable either…)

In summary, I think being nervous to attempt to insert something a fair bit larger than anything I’ve attempted before, when inserting dilators smaller than my husband have often resulted in scraping, burning, searing pain… I don’t think being afraid of that kind of pain is “wimpy.” Not at all.

Botox for Vaginismus: a Procedure Debriefing

Ladies, it’s official: I have Botox in my vagina.

My procedure was on Tuesday, two days ago. It was scheduled for 8am, which meant I had to arrive by 7am. Night owl that I am, I barely got up on time.

My husband drove me and accompanied me to the office. (He was highly amused by all the Sports Illustrated and auto magazines lying around in the main lobby; “Clearly,” he said, “This is where the husbands wait.”)

I was ushered in by a friendly young nurse in blue scrubs and a shower cap, and directed into the Procedure Wing. This area of the megaplex is set up like a hospital; small exam “rooms” that are really just little enclaves, with a hanging shower curtain instead of a door. Friendly Nurse directed me to a bathroom, told me to undress from the waist down, put little fuzzy booties on my feet, and pee in a cup.

“They need to do a pregnancy test,” Nurse said.

Seriously?

“Yeah, I know,” she said, shaking her head in shared disapproval. “But the anesthesiologists require it. Just leave the cup on the back of the toilet seat when you’re done.”

After the utterly pointless pee test was done, I got to change into one of backless hospital gowns (at least they’re made of fabric and not paper here!), and was ushered to room #3, and given about six or seven different papers to sign. Consent forms, “What to Expect After Your Procedure” forms, “Here’s All the Potential Deadly Risks of Anesthesia, Not That You Want to Hear About Them Right Now” forms. All very exciting, I assure you.

Next was getting the IV in. That’s my least favorite part; I am very, very uncomfortable with anything of a medical nature, especially if it involves pointy things like needles being inserted into my body. (Hmm, how could that possibly connect to vaginismus, I wonder…?) I can’t look when phlebotomists draw blood, even if it’s a tiny little tube. So when they put the IV in, I squirmed, yelped a little (it feels like a bee sting going in, and the nurse who did it was not all that gentle about it), and generally felt rather disgusted by the concept of a metal pointy thing sticking out of my hand. Thank goodness they were doing the Botox part under anesthesia! I can’t imagine being able to handle that consciously, even if it was numbed with a local.

Specialist Doctor made a stop by my room too. He ran over the details real quick: “The procedure should only take twenty minutes at the most. We’ll put a tampon in so you can wake up with it inside you. You’ll be in recovery for maybe a half hour, forty-five minutes, and then you’ll be good to go. Any questions?” I shook my head. “Oh come on,” he said, “Everyone’s got questions.”

“Okay…” I paused. “What dosage are you going to use?”

He frowned a little and leaned back against the wall. “Well, Botox is  a very safe medication. It takes thousands of units to kill a person. We’re gonna start you with 100 units, and possibly add more if needed.”

“By the way…” he added, with a little smirk, “If you’re wondering what a ‘unit’ is, it’s just how much it takes to kill a mouse.”

Ah, morbid medical humor.

. . .

Finally, I was carted in my wheely-chair into the operation room, with Specialist Doctor, the anesthesiologist, and several nurses looking on. They made pleasantries, talked about how nice it was outside. (There’s a huge glass window in the Procedure Room, overlooking some of the downtown city skyline. I hope no one in the other multi-story buildings can see in.) And then they got the anesthesia going.

It’s amazing how quickly anesthesia affects you. Immediately I felt a cold sensation creeping up my forearm, which got diluted the farther up it went; within ten seconds I was groggy (and apparently felt the need to tell the doctor that). Specialist Doctor did some Q-tip pokes to determine where the injections were going to go (that is one of the worst “OW” parts), and the anesthesiologist gave me a pure oxygen vent to breathe through. “Breathe it in deeply,” he said. “In… out… in again…”

…. Aaaaand next thing I remember, I’m in the recovery room. I remember waving at my husband once, but according to him, I did it four or five times; I also apparently asked if I said anything silly, which I hadn’t… Until the third or fourth time I asked it. (I don’t remember asking that at all. Go figure.)

Recovery went smoothly. Under normal circumstances, I would’ve been highly grossed out by the bloody and oozy pad I was sitting on, but thankfully the grogginess made me not care. It takes several hours for that “buzz” to wear off; we got home around 9:30am, and my husband had to take my hand and walk me from the car to the couch, where I promptly fell asleep for three hours. It’s taken a couple days for the anesthesia to fully wear off; I was a little shaky driving yesterday, and I slept eleven hours last night. But other than that, I haven’t had any anesthesia side effects; no nausea, no vomiting, all the “plumbing” is working normally. That’s pretty awesome.

As for other side effects, there’s been a little spottiness and brown discharge, but nothing more than what you might see during the first couple hours of your period. I’ve had a little soreness, both at the injection site and other places (why in the world my bum hurt for two days, I do not understand), but it’s only a little tenderness when standing up, not enough to need any sort of painkiller. So really, as far as procedures/surgeries go, this one was a breeze.

. . .

Removing the tampon, however, was quite a pain in the… well, vagina, I guess. I spent ten minutes with one foot on the toilet, trying to guide the string out, with no luck. Peeing didn’t help it loosen either; at one point I started panicking, thinking, Oh God, the Botox has kicked in, but it froze my muscles SHUT! The tampon’s stuck inside me! I’m going to get TSS and die! Aaaahhh!

“You know,” Husband said, “I could take it out for you if you want.”

Um… no.

The second attempt was successful; turns out using lidocaine and liberal amounts of lubricant are actually very effective on “stuck” tampons. (Also, tampons are gross. I can’t imagine ever wanting to wear one, even if it were easy for me. They come out all scrunched up and puffy.)

. . .

So, here I am now, two days later. I’m not allowed to insert anything for another day or two, but beyond that I don’t have any instructions yet. But I’ve noticed one curious little thing that’s different; suddenly, when I try to go Kegel clenching… It’s hard. It takes more conscious effort to get the muscles clenched up than it has before. The Botox starts kicking in 48-72 hours after insertion, so I’m hoping this is the first sign of its positive effects. It can take a week or so to see the full effects, so I’m hoping every day I’ll feel a little more open and able.

I’d also like to mention that, last night, I had a dream: I dreamt about my husband and I having intercourse for the first time. And, in the dream at least, it was painless… In fact, it was awesome. (Not orgasmically awesome, but “Holy shit I’m having sex and it feels GOOD  and AAAHHH YAY” awesome). Take that how you will.

Botox: Patient Asked, Doctor Approved.

Disclaimer: this post contains advice that I’ve received from people in the medical profession, including a medical resident and an MD. But I myself am NOT a doctor; my advice should be taken only as a suggestion of things to discuss with a licensed medical professional.

—

So, I talked to Leia this weekend. She and I were raiding the left-behind clothes in Miranda’s closet, a floor above the rest of the family.

“Hey, can I ask you for some medical advice?” I said, petting the cat to keep my hands from wringing themselves. “I’m having a procedure done at the end of the month, and it’s kinda experimental, and I can’t find much information online about it…”

Leia isn’t all that fond of rambling, so she cut in. “What is it?”

“Botox. For… vaginismus.”

It’s kinda weird, having regaled the story of my “vaginal performance anxiety” twice in the last week or so. But talking to Leia is different from talking to Vivian, because this is Leia’s specialty. She’s currently doing rotations as a resident at a hospital, but she specialty is ob/gyn and she plans on focusing on pelvic medicine/urogynecology once she has her own practice. So female sexual dysfunction is something that, as far as I figure, doctors like her should be obligated to study and learn about. Sexual functioning is a rather important part of pelvic health, wouldn’t you think?

“I’ve only had a few patients with vaginismus,” she said, “So I don’t know that much about it. But Botox is very safe. It’s used for all sorts of medical purposes now.” She put her fingers up to her temples. “Sometimes it’s even injected into the thin muscles surrounding the skull, to help manage migraine pain.”

I didn’t know that! I was really glad to hear that Botox is being shown to have medical uses in areas other than the poorly-studied women’s health. Leia commented that it’s used for almost as many medical purposes as cosmetic ones now.

She went on to say that there are only two concerns she has about the procedure: 1. making sure that the patient is sedated or completely unconscious for it, because Botox injections are painful (as one would expect with any injection into the vaginal muscles to be!), and 2. that the doctor doing the procedure is a specialist in female pelvic medicine, not just any ol’ internal medicine doctor. Unspecialized doctors often aren’t familiar enough with the muscle differentiations between the vagina and the urethra, and may sometimes inject the urethral area instead. Specialist Doctor is already a female pelvic specialist, and has pointed out which muscles he plans on injecting. (And judging by how much the Q-tip hurt as he prodded them, I think he was picking the right ones!)

“And make sure to give the Botox time to work,” she added. “A lot of people don’t see drastic improvement right away; since it wears off in a couple months, it might take a few injections to work completely. Give it six months to a year before doing anything drastic.”

“Wait, what else do people do for it?” As far as I knew, Botox was the “last resort” for many vaginismus sufferers.

“Some people have gotten surgery to remove part of the vaginal walls,” she said. “Not just the hymenal tissue, but the actual muscle inside.” She grimaced. “Don’t ever, EVER do that!”

Ugh! Personally, I can’t imagine ever being willing to tear out my own muscle. To me, the pain of losing all that tissue, and proper pelvic functioning to go with it, wouldn’t ever be worth intercourse. (And when I mentioned this to my husband later, he agreed with me. “I’d much rather never have sex than you tear yourself up like that,” he said, twitching his hands, as he often does when viscerally grossed out.)

But to some people, I imagine, if no other treatment has worked, they will be increasingly desperate for a cure, even one with costly side effects. But personally, I can’t help but think that tearing up the vaginal walls is going to do more damage on the intercourse front than it would help. (I would imagine having a penis enter tissue that’s been cut up and scarred is always going to feel worse than intercourse with muscles that are resistant, but at least healthy!) My own advice to fellow vaginismus sufferers would be to give Botox a fair chance, if nothing else has worked. It doesn’t destroy any tissue or organs, it isn’t permanent, and the only fairly common side effects are mild incontinence. Many people don’t get side effects at all.

(Though I do need to mention, as Specialist Doctor did, that Botox can have a rare but serious side effect called Botox Syndrome, where essentially the patient gets poisoned from an overdose and will need to get antidote from the CDC. Botox Syndrome causes extreme fatigue, often to the point where the patient can’t get out of bed. So if anyone out there does plan on getting Botox in the near future, make sure to have someone watch you for a few days, or if that isn’t possible, keep your cell phone with you, with your doctor’s number programmed in.)

“Your doctor probably only told you about Botox Syndrome because he’s required to do so by law,” Leia added. “They have to give you all the information available, so you can make an informed decision.”

“Otherwise, I could sue him.”

She nodded. “But really, you should go for it. Botox is very safe. Don’t worry about it.” She paused. “…But I would add that, with most cases of vaginismus, there’s underlying psychological problems too. Have you been to see a sex therapist?”

Honestly, I haven’t, but I also haven’t felt it necessary. I’ve done enough internal examinations to know which of my neuroses are most likely to blame.

“I just ask because… I don’t mean to pry, but most patients with it have experienced some form of sexual assault.”

(Personally, I find that claim a little dubious, because less than half of the women on the Vaginismus.com forum have included sexual assault in their “Personal Stories” threads. But hey, I’ve never done a proper survey on the matter, so I guess I wouldn’t know.)

In any case, I have never been sexually assaulted, and I told her that. “No, it’s my anxiety to blame,” I said. “My brain doesn’t need a reason to develop a great fear of something.”

I also mentioned vulvodynia to her too. “My vulvodynia’s pretty moderate, and lidocaine manages it well,” I said. (This isn’t always true, but I didn’t want to regale her with any more overwrought tales of my sexual suffering.) “And I only have vestibulitis; I don’t have it over the entire vulva area. But I know some people do, and I can’t imagine how miserable that must be for them.”

Leia was silent, but nodded respectfully. Then she added, “I can do some research for you too. I’ve got access to medical journals, and I’m got a lot of free time over the next few weeks. I’ll look up any studies about Botox and see what I can find for you.”

Leia has always been a genuine doctor, one who strives to give her patients as much information as they can. Last fall, when I was struggling with fatigue and lack of mental concentration (and my PCP was of no help), she gave me lots of information about hypothyroidism, anemia and Vitamin D deficiencies, and then wrote a scathing rant against PCPs who are more concerned about running their business than caring for their patients. Perhaps she will become more jaded once she’s part of a practice, but for now she’s been a vigorous and concerned doctor for me, and has probably helped whip me into shape better than any other doctor I’ve seen. I’m hopeful she can find some interesting resources about vaginismus and Botox for me; if I find out anything that readers might find useful, I’ll pass it along.

In the meantime, I guess I’m now charging full-steam ahead towards the Botox… My appointment is scheduled for the 24^th of April, so we’ll see what happens then!

The Seven-Point Path (for Vaginismus/Vulvodynia Treatment)

Well, seems I’ve been neglecting this blog for far too long, so before I forget again, here’s what happened with the first visit to the specialist. I’m getting closer to catching up to the present day: this particular visit was in May 2011.

Walking into the female pelvic medicine office for the first time was a somewhat surreal experience. It was also on the highest floor of the megaplex, but this side was built like a private doctor’s office, with a flat screen TV broadcasting the weather and 4-foot-high posterboards advertising bladder control treatments and permanent birth control options. I had a choice of magazines between Good Housekeeping, some fancy sports car magazine for the husbands, and The Economist. (I chose The Economist. I’m a nerd.) Probably 90% of the patients in the room were over 50; I felt like my lack of wrinkles signaled that I wasn’t “supposed” to be here. Lots of other women were probably here for the usual post-menopausal problems with incontinence or frequent urination; I, however, had a defect. (I’m very good at feeling singled out, particularly when nervous and in an unfamiliar environment.)

But the moment I met my doctor, I felt hopeful again. He was quick, but intense. He introduced himself as “the doctor people come to when things go wrong.” Before I knew it, he had outlined an intensive treatment plan that would take me in every direction imaginable, from home therapy with dilators and Kegels to office-based physical therapy and “electrostimulation” to pain shots to muscle relaxants to Botox. I couldn’t really process the entire list at once, it was so expansive and aggressive. I started crying in the exam room again, as I’m wont to do when dealing with this condition, and I was shaking and stirring a whole cocktail of emotions together in my brain.

It was still so hard to believe that a doctor was finally taking me seriously. In this case, he was a specialist in pelvic disorders; just being able to see him legitimized my condition as something needing and deserving of treatment. But at the same time… Legitimizing the condition also forces me to accept that I DO have a problem, and it’s a difficult one, one that I can’t simply ignore and hope it will go away. This particular thought process is probably familiar to many vaginismus and vulvodynia sufferers out there; I don’t doubt that it’s a common part of the recovery process. Some days I want to hide it, and pretend that nothing is wrong with me; other days I want to fight it for hours on end until my entire body is slack from exhaustion, and neither of those routes are going to get me where I need to be.

What was needed, according to Specialist Doctor, was:

• Purchase a set of silicone rubber dilators (“Throw out your plastic ones,” he said, “don’t ever use them for dilating again, they’re horrible”), and dilate with them for fifteen minutes, twice daily;
• Apply a topical lidocaine ointment twice a day, as well as five minutes before every dilation, to dull the nerves;
• Kegel exercises, done 4-6 times daily, to strengthen the muscles
• Administer a local lidocaine injection, under anaesthesia (also for dulling nerves);
• Physical therapy once a week, which would involve electrostimulation (to relax the vaginal muscles);
• Potentially taking a prescription strength muscle relaxant, which would also have antidepressant/anti-anxiety effects;
• Local Botox injections in the vagina (to freeze the muscle spasms).

No pressure.