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.

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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!

Dilating is like a dentist appointment. It involves a lot of pricking.

(Mild Trigger Warning on this post. There is some theoretical discussion of sexual assault.)

So I wish I could say I’ve accomplished something, in terms of the Vs, in the last few days. But alas, apathy and avoidance have struck again. I haven’t touched the dilators in probably a couple weeks now, which really is not a wise decision, especially with my Botox coming up at the end of this month.

There’s one strange problem I always have with the dilators though. I have this elaborate routine I go through whenever I’m preparing to do them: I have to shut all the blinds (in every room), lock the front door, deadbolt the same door, lock my bedroom door, pull the covers up over me… Whenever I dilate, I always feel exposed. Vulnerable to attack. I wrap myself in covers because it’s a typical child’s response to feeling unsafe in their room, and when I’m prepping my dilators, I feel like a powerless child again. My ears are pricked, taking notice of every voice in the courtyard. My heart skips a beat when I hear my upstairs neighbors pacing across my ceiling. I’m always anticipating the sound of shattering glass as a robber breaks through my windows, first thinking of only stealing the TV but then wondering if there might be a weak, defenseless young woman alone in the house…

I should add, at this point, that I have never been sexually assaulted. I know several people who have, but for them it was almost always someone they knew: a caretaker, date, or “friend.” I don’t want to diminish the experiences of those who have been attacked by strangers, for their stories are very real and very terrifying, but as far as I know, they are in the vast minority. It is highly, highly unlikely that anyone is going to break into my apartment (especially in my safe neighborhood) and rape me as I’m dilating.

But again… The Fear. It’s always there. And as a person with vaginismus knows, it doesn’t matter how much you have reasoned and rationalized with yourself about safety. You know consensual sex is not supposed to be painful, but that doesn’t matter. It doesn’t matter if you have a loving, attentive partner, one who would stop the moment you were uncomfortable… In the moment his penis touches you, your reaction is nothing but instinct. CLOSE UP. SHIELD YOURSELF. GET AWAY.

And even if I can relax temporarily, if I can get the 5th or 6th dilator in all the way and have it not hurt, I’m still always tense. I’m still always consciously focusing on my muscles, willing them to hold this particular position, because if I get distracted and lose focus, they will instinctively clamp shut again. And the pain that comes from that snapping shut, well, that’s the pain we V-girls have taught ourselves to fear.

For any readers who don’t have vaginismus, imagine yourself at the dentist’s office. As he inserts the plaque pick, he tells you to “open as wide as you can.” Technically, you are relaxing your jaw muscles when you do this, but does it feel relaxed? No. Your mouth feels strained, you have stiff cylindrical objects poking around in sensitive areas, and if you get pricked a little too hard, you want to snap your jaw shut… but if you do, just think about how it feels to have that hooked probe tear into your gums or your cheek! This is what vaginismus is like. It’s prying open a part of your body that’s supposed to stay closed, trying to stay relaxed but knowing that if you slip up just a little, that pain is going to come flooding back, full force. (It’s not a relaxing prospect.)

After a good amount of time with the dilators, I can usually work past this point now. There IS a point you can reach where suddenly it feels like the walls of your vagina rearrange, bending around the dilator and giving it plenty of room to maneuver. Once you reach this point, you don’t worry about the pain, because it feels like you can roll the dilator around, prod it against the vaginal walls, and it feels like the walls have gone elastic; you can feel them bend and even squish a little. But this is a progress point, not the endgame; in my experience, I can lose this sudden “loose” feeling at the sound of a yell outside or a THUMP on the ceiling. Being startled by anything makes me snap shut, and then the process starts all over again.

I may or may not dilate again before talking to Leia this weekend; I’m going out this evening and will be house-hunting and visiting my parents tomorrow. But you should hear from me sometime early next week, and I’m hoping to bring some positive stories along.

The Vaginal Seismograph (Where Physical Therapy Goes High-Tech)

Okay, so I guess, given that I’ve pretty much abandoned this blog for six months, I should give a truly stellar explanation.

… I’ve got nothing. Feel free to insert some rambling here about job-hunting (a spectacular failure, I might add), a vacation in Florida, and beginning to search for our first house. Intersperse that with a heavy dose of depression, administered daily, until a satisfactory level of incompetence has been achieved.

I suppose, to start out with, I should probably catch myself up in the backstory. Next step, the physical therapy.

I’ve did over a dozen sessions of physical therapy between September and December, usually scheduled on the same day every week, so I could request them off of work. (I’m so thankful my bosses never asked what, exactly, those weekly “doctor’s appointments” were for… Though one did ask me how one of my appointments went, and I said, “About as exciting as physical therapy usually is. I’d rather be here.”) It became a routine, an endless, cyclical pattern; a nurse would lead me to an exam room, I’d undress from the waist down and be given a tiny probe to stick in my vagina. After I got that in, the PA-C would come in, make pleasantries (a strange thing to do as my ladyparts were on prime display), and hook up the USB end of my probe into a computer. I would follow a pattern of clenching and relaxing my muscles, in tune to the soft beep from the computer; and the monitor displayed a wavy blue line that rose and fell with my contractions. My therapists were largely just there to record the numbers that this vaginal seismograph spat out.

(I was rather amused to find out that coughing disrupted the whole system, and the blue line would jump off the chart. Apparently coughing causes a vaginal quake. Who knew?)

So in summary, most of my physical therapy didn’t help much. There was one PT, however, who did teach me a muscle relaxation technique that was really helpful, so for those still struggling with vaginismus out there, take note!

Instead of just clenching and relaxing, when you relax, make a fist with your hand (so you make a tiny little tube with your fingers), hold that tube up to your mouth and try to blow through it, as hard as you can. Push all your muscles down and out, even the ones around your bum; use it all to exert as much outward force as possible. This really did help me feel the difference between my default “relaxed” state (which was actually quite tense) and what REALLY relaxing those muscles feels like.

What I found most interesting about PT in general was getting the quantifiable feedback about my muscle tension. I mentioned earlier how neat it is that science enables us to measure that tension in an easy-to-understand, numerical way. I do like math and percentages; I find it easier to reward myself and take pride in my efforts when I see that my muscle tension has decreased from a 7.8 to a 6, whatever those numbers mean. (Hell if I know.) And the last couple of times I went to PT, I could occasionally bring my muscle tension down to beneath a 3, which is the threshold of “normal.”

Of course, those moments of normalcy were brief, little peppery bits sprinkled across a mostly spastic readout. But it’s healthy to take one’s victories where one can.

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.

Welcome, from the Defective Woman

Welcome to The Defective Woman, a blog about vaginismus and vulvodynia. (I would put an exclamation point there, but anyone who has either vaginismus or vulvodynia knows this is nothing to be excited about.)

This blog is intended to chronicle my journey through the dizzying, nerve-wracking and often frustrating world of diagnosis and treatment. Although vaginismus and vulvodynia have high rates of treatment success, my attempts to overcome are far from over. Follow along with me and you’ll see just how winding and endless this road can be. Look out for the twigs and tree branches on the trail; they might just trip you up.

Clearly I’m not the type of gal who sugar-coats her illness blog with empty optimism. I prefer reality, as colorful, lumpy and unexpected as it can be. Expect more than a few “shits” and “fucks” to be sprinkled throughout these posts. I’m not a perfect, flawless woman; I’m a little bit defective.

For more information about these very real and often debilitating (but not insurmountable) conditions, check out the Resources page. For a little more about me and the purpose of this site, hit the About page.

For everything else, just follow me!