On Elavil (And Off Again)

Near the end of January 2012 (we’re catching up to the present!), I had another appointment with Specialist Doctor. The lidocaine had been helping my vulvodynia fairly well and consistently, and the physical therapy had improved my vaginismus somewhat. But my successes weren’t consistent; sometimes I could relax the muscles completely, other times I could barely move them at all. SD had me do a series of Kegel exercises while he had a finger inserted in my vagina, to measure my reflexes.

“Well,” he said, as he removed his finger and took off his gloves, “Half of those were great. And half of them sucked.”

The man has no qualms about being blunt.

So the next step was to get me to relax, consistently. But you’ve seen how my mind works by now; relaxation is not my strong suit. So what to do, what to do?

“I’m going to write you a script for Elavil,” he said. “It’s a tricyclic antidepressant, but it works as a muscle relaxant too. We’ll start you on a small dose and move up to the regular starting dose for antidepressant treatment.” He looked up from his notes for a moment, and met me with a sympathetic, knowing eye. “I think you may find some added benefit from that aspect of it too. I’ve never had a patient with vaginismus or vulvodynia who didn’t also have depression.”

He’s right, of course. By the time a woman has understood her condition well enough to seek treatment from the doctor who “people come to when things go wrong,” they’ve already had plenty of time to ruminate on how this affects their relationships and definition of self. I’ve already had plenty of opportunity to compare myself to my able-vaginaed family and friends, to envy those who find sex so pleasurable that they crave it, even over oral or manual stimulation.

(I’ve often wondered what it is I am missing, this ability. Sometimes I feel like a person blind from birth, someone who hears stories of this strange form of sonar that lets them know about silent objects that are far away; it seems like a very useful ability to have but I honestly cannot conceive of it. A blind person cannot imagine what it’s like to see. I cannot imagine what it’s like to enjoy sex. At most, when using my dilators and my lidocaine, I can get to a state of “mostly comfortable” numbness. I am thrilled that the pain has been gradually easing away, but pleasure? Where can the pleasure possibly come from, when I can only feel stretched, irritated, or numb?)

So yes, depression is a constant. And at the time of this appointment, I was in the process of leaving a dead-end job as a sales associate in a department store. I am a shy and bookish person, and I would much rather work at a computer all day than earn $8.50 an hour cleaning up spilled bottles of perfume and ringing up impatient, entitled customers. So I was feeling the exhaustion from working in an ill-fitting job as well, and that combined with the seemingly endless cycle of “dilate, hate self, dilate, hate self” on repeat… Well, an antidepressant was rather enticing.

“I have high hopes about this one,” SD said, as he finished writing his notes on my checkout sheet.

“Are there any side effects to it?” I asked. I had taken an anti-anxiety medication for a few days in college, and the result was that it gave me panic attacks. (Rather opposite of the intended effect.) I didn’t want to face that again.

“It’s going to make you tired.” He shrugged. “Just take it before you go to bed and you’ll be fine.”

Tiredness? Well, that was a constant for me anyway. I was used to that, I figured I could handle it. So I took my first pill after my last day at work, around 10:30 at night, and promptly fell asleep.

I woke up the following morning, at 10:30am… and managed to make it out to the couch before collapsing and sleeping for another two hours. And after I got up from my 14-hour nap, I walked around the apartment in a heavy haze, trying and failing to even remember what chores needed to be done.

I assumed this was just a typical early reaction, and the side effects would wear off after a few days. They did get a little less pronounced after a week or so. I went out to dinner with a friend at one point, who had started an SSRI antidepressant around the same time I did; comparing notes, we found we were sharing a hazy fatigue, and the eerie suspicion that we should be feeling more emotional lows than we actually were. But I noticed a distinct drop in the amount of crying jags I had in the shower, and being tired seemed like an acceptable price to pay for a relaxed vagina and a quiet mind.

I did see some improvement using the dilators while I was on the Elavil. When I started taking it, I couldn’t even insert the sixth dilator in my set; a month later I had mastered it and was moving on to struggling with the seventh. But I honestly can’t say whether that was due to the Elavil or simply me being more diligent with my practice.

And as the days have worn on, my fatigue hasn’t faded away. I would still sleep for ten hours or more every day, and for the rest of the day I would pace meandering circles in my apartment like a disoriented zombie. I no longer had the energy to be creative; I stopped making jewelry, drawing, writing, all those things that I relied on so much to bring me joy and self-fulfillment. I didn’t feel motivated enough to submit job applications; it feels so much like a wasted effort, submitting dozens of apps with no call-backs, that often I felt it isn’t worth my time. But I wasn’t accomplishing anything else with my time either, and I was still cognizant enough to realize that.

That night I wrote that post about depression? I stopped taking the Elavil that day. I’ve been accomplishing so little that even the antidepressant cannot keep me from spiraling into a whirlpool of self hate. So I’ve decided to take a risk; go off the Elavil. See if it brings me back my energy and my inspiration, even at the cost of my success with the dilators.

I can’t speak for my state of vaginal relaxation yet; I’ve been on my period and thus avoiding using the dilators. And for the last few nights or so, I’ve struggled a bit with insomnia, sometimes sleeping only 4-6 hours.

I’m still bouncing between feeling proud when I complete an exercise routine or a job application, and feeling like I’m an incompetent wife or a casualty of the recession (depending on whether it’s the vaginismus or the unemployment on my mind at the moment).

But as you can see from this journal, my inspiration to keep writing and sharing my story is coming back. And if reading my story is helping someone out there to come to terms with her illnesses and motivate her to keep trying with those dilators, then I’m doing something right.

First Knives, Then Needles

Backstory, CONTINUED because it’s late and, as I am now unemployed, I am free to drink inordinate amounts of chai tea and keep myself buzzed until midnight if I want to. In return, I have to control the urge to place weekly orders from the Dick Blick art supply catalog. Shopping is an addiction, even if you’re buying acrylic paints and spools of copper electrical wire. That’s not only an addiction, that’s a WEIRD addiction. But I digress.

What was I going to write about…? How about the lidocaine shot? That’s a fun one.

So sometime before I began my physical therapy sessions, Specialist Doctor wanted to see if a local injection of lidocaine in the vulvar vestibule would ease my insertion of Q-tips, tampons, and other common household items. (Actually, inserting things like hairbrushes probably wasn’t high on his goal list. But hey, if I can comfortably fit the handle of a hairbrush in there, I may well do it just because I CAN.) While the idea of having an injection down there was pretty terrifying, I was hopeful that dilating might someday feel less like scraping my labia against a 100-grain sandpaper.

The actual procedure took place about nine months ago, so I’m a little fuzzy on the details. (The twilight anesthesia may be somewhat to blame for that.) My husband had just started a new job that week, so my mother was recruited as driver and chaperone. Together we were escorted past the normal exam rooms into a separate wing of the building, one lined with starched white hospital beds, separated only by flimsy powder-blue curtains. I changed into the equally flimsy paper sheet that is a pathetic excuse for a “robe,” and struggled to hold the back shut while waiting for my anesthesiologist. (They’re going to have a front-seat viewing of my ladybits, do they really need to see my ass too?)

Specialist Doctor greeted us in blue scrubs, cap and surgical mask, and ushered in my IV. Thankfully my previous experiences with anesthesia were all positive, so I wasn’t afraid of that. But as they wheeled me away from my mom and into a brightly lit room with a large window overlooking the parking garage, I was a bit nervous. I still felt perfectly aware of everything around me. There were far too many surgical assistants in the room (do we really need five people to inject a shot?). When the doctor took a dry, scratchy Q-tip and poked my sensitive introitus muscles, asking if it hurt, I was still awake enough to say, “OW, YES!”

… Next thing I remember, I’m back in the waiting room. Specialist Doctor is giving my mom a packet of aftercare instructions and bringing in my departure wheelchair. Anesthesia is a rather awesome little invention, isn’t it? I can think of a few other memories I’d like to have blocked out like that.

Unfortunately, the lidocaine injection didn’t help much at all. Topical lido ointment, as it turns out, is much more effective for me than an internal shot. But, I can dilate without that awful vaginal-rugburn now, and I can now honestly say that I’ve had a needle stuck in my vagina. That should earn me some bragging rights among my friends and sisters, I think. Or at least some horrified looks.

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.

The Women’s Health Megaplex: New Doctors, New Beginnings

Previously, on the Defective Woman: I had found a name for my condition, but self-treatment was not working. Also, my BCP scripts had run out, and I needed to visit a new doctor to renew them. I already had two less-than-positive experiences with doctors concerning this condition, and feared that the next might be the worst. (I hope you imagined that in a voice of a TV drama narrator.)

I chose the OB/GYN office that looked to be the largest, and had the most comprehensive information on their website. They have a section called “Knowledge is Power,” addressing some preliminary concerns about several common gynecological and urinary problems. Although I didn’t find the term “vaginismus” in that section, I did see the terms for other similar conditions — vulvodynia, interstitial cystitis, etc. — and that gave me a bit of hope.

However, the only doctor I could see within two months happened to be male. I signed up to see him, but I was scared as all hell. I had never had a male doctor before; I had no idea if that would be a good thing, neutral, or negative. Would I feel threatened by a male doctor? Would he, not having the body parts necessary to experience the pain I was in, have even less sympathy than the other doctors? Their office claimed that knowledge is power, and that they treated several kinds of chronic pain conditions, but could they live up to their prestigious advertising?

When I went in for my first visit, I was astounded by the size of the building; it was solely a women’s health center, but it was four stories high! I passed a gift shop and a cafe on the way to the stairwell. There was a directory listing in front of the stairwell, with numbers for various surgery and birthing centers, and probably over fifty doctors names listed. The doctors were divided into two wings on the fourth floor: the regular OB/GYN section, and a separate division for a pelvic medicine and urogynecology department. My appointment was with the OB/GYNs, so I went in and waited — waited with two dozen other women in the lobby until my number was up. (Or at least it felt like it was.)

My doctor turned out to be a very soft-spoken older man. I explained my need and my condition to him, quivering with fear, but he reassured me. “I won’t do anything to keep you from having your pills,” he said. “I had a patient who, a few years ago, was just like you, couldn’t even get a Q-tip in without screaming in pain. She has two kids now.”

It’s probably around this point where I started crying. I know it happened at least once during this visit. My emotions were a bit too complex to explain fully; a mixture of frustration and relief, I suppose. Frustration at having to acknowledge the presence of this pain again, but so, so relieved that my doctor was sympathetic, and hopeful — perhaps I could be the next success story he tells.

He did an external exam, which stung and burned (like usual), but wasn’t worse than any of Dr. Barbie’s exams. He then offered to write me a letter of referral to the pelvic medicine division. “This type of condition is out of my realm of expertise,” he said, “But one of the doctors in the other department deals with these cases quite often. I’ll write you a letter today, and his nurses will call to schedule an appointments for a couple weeks from now.”

He wrote me a script too, and soon I was back on my blessed BCPs. Next stop? The pelvic medicine department, to finally start addressing the vaginismus head on.

You want to put that knife WHERE?! — A Hymenectomy Story

After I saw my family physician for dysmenorrhea (painful periods), she referred me to an OB/GYN for treatment of my vulvar pain. When I went to see the new doctor, I was approaching twenty, in my sophomore year of college, already in a serious relationship with my awesome husband-to-be.

(There’s about a year gap in my memory between seeing my GP and visiting the OB/GYN. I’m not exactly sure what happened in that time frame. I might have been avoiding visiting the specialist for fear of what she might tell me.)

In any case, when I went in, I was still in the dark about my condition(s) and what it might mean. I’d avoided any sort of penetration — everything from intercourse to tampons — and had no idea what to expect.

Upon first sight, my doctor reminded me of a forty-year-old Barbie, with long blonde hair flowing over her blue scrubs. She was chipper and, after I explained the problem to her, she seemed confident that she knew what it was and that she could fix me up in no time.

“An imperforate hymen,” she said, with a quick nod. “It’s an easy fix. A quick surgery and–”

Wait, what? Surgery?!

Yes indeed, surgery. Scheduled a mere week later, no less. Dr. Barbie suspected that my hymen was unusually thick and might not have naturally eroded away throughout adolescence, as most hymens do through exercise. I was on my period for that initial consult with her, so she decided not to do a visual exam for verification (having been to several women’s health specialists since then, who couldn’t have cared less whether I was on the rag for my appointments, I have to wonder why she thought it was an issue). She figured she would just knock me out with some anesthesia and do the visual exam, then slice and dice as needed. I was not too thrilled with the idea of her taking a knife down there for an “exploratory” surgery.

But the fun part of this story is that she was right; at least that’s what she told my mom afterward. Apparently my hymen was so thick that if I had tried to insert a tampon, it would not have worked; the only opening in it was too small for it. The not-so-fun part of all this was, well, everything else. Thankfully I have no memory of the actual operation, but I DO keenly remember several events:

• Nearly passing out while getting my blood drawn. (The blood-drawing was done to check if, get this, if I was pregnant. Necessary? I think not.)
• Getting an anti-anxiety shot prior to the surgery. As a person with generalized anxiety disorder, I remember this as being pretty damn awesome. Having a medicine that instantly takes away panic attacks? Why is this not OTC?
• Being wheeled out of the hospital with a goodie bag containing a pink puke bucket shaped like a kidney bean, and a water spritzer, with the instructions to spray “on the affected area, to ease discomfort, as needed.” “As needed” translated to “as often as possible.”
• Being on Darvocet, a prescription-strength painkiller derived from opium. This is also filed away in the “pretty damn awesome” folder.
• Being unable to attend class for a week as my cooch continually bled, and not in the usual way. NOT in the Awesome Folder.
• Developing a “slight” bacterial infection about a week after the surgery. Mind you, at this point in time I was not aware that I had vulvodynia. Vulvodynia, by definition, makes any feeling of discomfort on the vestible (where the hymen is located) intensely uncomfortable… So when you get an infection there, it becomes itchy to the point of being horrific. It was an all-consuming itch that burned like a Ring of Fire around my vagina. (And now you will never think of the Johnny Cash song the same way again.)

In short, the hymenectomy was not a fun time. There was lots of wincing and emotional outbursts involved, and it took a couple weeks to fully recover. But my doctor was confident that she’d solved my problem, and in a few weeks I could stick anything in there I wanted, right? Right?

(….Stay tuned for the next installment.)

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!