Survey says, still infected

10/13/2009 at 8:29 pm | Posted in Uncategorized | 5 Comments
Tags: , , , , , , , ,

Welp.

I went to the gyno last week to get a follow up on those long-lived, resistant infections I had all summer. I had been feeling a little off when I went in, but nothing major. The exam itself went as well as it could have, which is encouraging – I haven’t reset back to square one pain-wise. The gyno took some vaginal swabs & did a urine culture. She prefers to run samples off to labs instead of diagnosing patients on the spot, and that works better for me too – since my infections don’t always follow the typical course you frequently see described online, I don’t think I could be diagnosed on site, by sight alone. Not enough typical-for-an-infection discharge to go by. My self-reported symptoms aren’t always obvious enough to set off any major alarms either. And even if they were, even I would have to question whether it’s something else like the pelvic floor muscles acting up somehow or skin irritation.

Unfortunately the results of that exam are not so good. I still have the same infections I had all summer – Candida yeast & Gardenella bacteria.
I am now in Chronic territory. That is the exact word the gyno used to describe the infections at this point. Chronic Candida.
My urine culture came back clear though, so the UTI I had has been wiped. Well that’s one good thing I guess.

Actually, when I pressed the gyno for more information, she read some more detailed results back to me – the Gardenella is present, but in a small enough concentration so that, if I weren’t noticing symptoms I could probably go without treatment, especially since I’m not pregnant. Some doctors like to treat for Gardenella if it’s present at all, other doctors will leave it alone if it’s not causing any major problems for the patient. So the bacterial vaginosis is optional at this point. I still want to treat for it though since I had noticed some urethral discomfort with urination a few nights ago. Just in case something is crawling up there again…

It may be possible to leave asymptomatic yeast alone too, but the gyno definitely wants to treat for it and so do I. I’m not exactly asymptomatic right now. Mild symptoms, but I’m feeling something. Yeast can cause inflammation & inflammation is the last thing I need right now.

But since all summer I’ve had two infections at once, I can’t determine which of these culprits is responsible for the mild symptoms I am noticing. I can’t narrow it down.

I don’t think I can risk not treating these infections. I’ll probably be dealing with some residual vulvodynia & vaginismus long-term to begin with. I’m scared of backtracking… Let’s not add more vulvovaginal health risks to the mix.

I am now at the point where I forget what “Normal” feels like. How does that go again? It feels like “Nothing,” right?
Oo, I had it for awhile. I almost had it. I almost knew what “Normal” felt like, for a few months. Oo, so close.
Nobody write any posts about how great it is to have a healthy normal vagina for awhile or else I might – go into a jealous rage or feel self-conscious and disappointed in myself or something.

Wow these infections will not go down for good. I’m not certain if the infections are responding to medication and then coming back later, or if the medications I’ve been using aren’t strong enough to kill everything. I’ve already tried antibiotics & antifungals, and what I’m noticing with them is that, while symptoms tend to clear up while I’m using the medication, after I stop they come back. I’ve been using the medication exactly as directed, so I’m finishing off everything. But maybe the treatments aren’t long enough? Or the dose is too low?

I’ve been taking steps to avoid re-infecting myself. I have not had partnered sexual activity since February. I clean all my non-porus dilators & toys, and when there are still questions about the dilator’s cleanliness, I use a condom over them. But I also haven’t dilated in the last month, specifically because I was afraid of re-infecting myself. So it’s definitely not the dilators, they are out of the equation. I wipe front to back, and when I wash I use a very mild soap on my body & don’t get any near my vulva or vagina. I washed my clothes with vinegar in the rinse cycle for awhile (this can be used to remove mildew odors in laundry,) I even boiled my all-cotton (breathable) underwear at one point. I boiled my underwear. That was interesting to explain to the parents why their pots were filled with cooking fabric instead of cooking food. I get probiotics in my diet. I take cranberry pills & drink cranberry juice on a regular basis (it tastes bad plain.) I even take a little supplement called “Yeast Fighters,” which contains biotin & garlic, among other things. So what am I doing wrong?

So what’s left after eliminating other variables?
Just me…

I think there may be something wrong with my vaginal pH that’s making it easier for organisms to grow. I actually have pH strip paper but it’s not sensitive enough to tell me anything. Perhaps my menstrual cycle is throwing the pH balance off due to blood in my vaginal canal. I’ve been eating a lot of probiotic yogurt & keifer, but that’s all dairy products – could be lowering my pH. Which is ironic, since the reason I’m eating yogurt & keifer in the first place is because I need to get some lactobacillus bacteria in me, to help me fight off more vaginal infections. I’ve been taking probiotic capsules too, but obviously they aren’t doing me much good. I suppose I should acknowledge diet could be a factor here, but I am currently unwilling to change my diet to find out anyway.

It’s getting scary also because now I’ve had an acupuncturist (not my regular guy) ask me if I have diabetes, and I’ve had a general practitioner ask me if I have any autoimmune disorders. Both questions were in relation to the long-lived infections. The answer to both questions as far as I know is “No.” But then I remember that quite a few vulvodynia patients do report having other simultaneous pelvic problems like IC or IBS, or autoimmune disorders. Is my body changing before my very eyes? Or am I just being paranoid?

I reviewed the chapter on vulvovaginitis (infections) in Female Sexual Pain Disorders. It’s telling me some things I already knew as a pelvic pain patient, but new things as well. According to one table (15.2,) the UTI I had earlier could be related to BV after all, although the mechanism for that relationship is not explained. That’s interesting though.

Treatment wise, I’m running out of options here. Although I’m not feeling terrible discomfort, I don’t want to leave this untreated. I’m worried I could backtrack & feel acute vulvar pain again if this goes on much longer.

I’m not completely out of options… but I’ve already tried a prescription antifungal cream, oral fluconazole, oral flagyl (I don’t do well with the gel form of this,) cipro, and Levaquin. Short term, I will be using Flagyl 1 more time for this round of BV, and an antifungal cream (which thankfully I have some pain-free experience with.) Then I will be on a long-term oral antifungal regimen for 3 months. It probably sounds more hardcore than it actually is – I’ll just take 1 fluconazole once per month. (Why the doctor is having me space them so far apart is beyond my understanding, since I know it leaves the body after just a few days.)
So what happens if I do this long-term thing and I’m still not better?

I might have to start thinking about seeing a specialist about these infections. Hopefully it will not come down to that. But I’m thinking if it does go down that way, I have three options. I could, see an infectious disease expert locally (even though this isn’t necessarily infectious at all; you can be a virgin & have a yeast or bacterial infection.) This might be the cheapest option since I could see someone in my insurance network, but I’m not sure I’d be able to find someone well-versed in vaginal infections specifically. I could return to my old vulvovaginal specialist, which would cost more but that practice knows my history & is prepared to deal with chronic infections.
Or I could do something else. Don’t know what that something else is yet.

I know there are alternative treatments. Oh I know, no need to remind me, I’m fully aware. I know I haven’t tried inserting probiotic yogurt or capsules directly into my vagina. I haven’t tried an apple cider vinegar or a hydrogen peroxide douche. I haven’t tried inserting boric acid capsules. I actually looked for gentian violet a few months ago at the local pharmacies & natural/alternative food stores a few months ago, but I couldn’t find anyone who stocks it.
I know other at-home treatments exist. I know other women have used these at-home methods. I know I could probably even find instructions online. Even Female Sexual Pain Disorders acknowledges the value of boric acid capsules (101).

I asked my own gyno if she ever prescribed these alternative treatments like hydrogen peroxide douches or boric acid capsules to her other patients, and she said, “No,” so she doesn’t really do that. I’m not comfortable using those treatments alone.

I am already still doing acupuncture & chiropractic. Already doing that alternative therapy.

But can you understand why I am afraid of inserting strange objects into my vagina after so many years of problems with it? I’m not sure I could use these treatments if a doctor prescribed them. Even if the vaginismus isn’t a problem for me when I use an alternative treatment, I’m not sure I’d be able to overcome my own anxiety.

In the mean time, I want to go do something fun which, does not require the involvement of my vagina at all. I think I need to do something to de-stress. See a movie or do some traveling. Something to take my mind off of it.
I don’t know how easy that will be if I am leaking antifungal cream for the next few days and if I have to remember to take an antibiotic at the same time every day, but, I want a break from this.
No, actually, I don’t want a break from my vag even though it follows me around everywhere. I am trying to make peace with it. I want it to be happy & content & healthy. I don’t know how other people do that.

Advertisements

My experience with alternative treatments for Vulvodynia

07/28/2009 at 6:43 pm | Posted in Uncategorized | 11 Comments
Tags: , , , , , , , , , , , , , ,

I’ve mentioned on this blog that I see a chiropractor & acupuncturist. These treatments are for management of some mysterious pelvic pain, which has significantly improved in the last few months.

I should probably clarify what that means and what my history with alternative medicine is.

I actually do have some experience with alternative medicine treatments for vulvodynia. A few years ago, when I was just starting my long journey into the land unknown, I tried acupuncture and homeopathy. I stopped because it didn’t work at the time. About a year later though, I returned for acupuncture & chiropractic work for a mysterious, unidentifiable pelvic pain flare. That’s something I continue to do now, although I’ve tapered down the frequency of my visits.

No alternative medicine treatment I have tried has had any noticeable effect on the vaginismus. At-home dilators & physical therapy are a better option for me personally.

How I got into this and where I stand now is kind of a long story. I’m divulging this now partly in anticipation of someone inevitably asking me “Well did you try anything else before you had surgery/physical therapy/whatever else you may try later on in life?” Yes, actually, I did. And, maybe by sharing, I can save someone else a few bucks or provide feedback on what to expect.
None of this should be mistaken for actual medical advice though. This is what I went through. I can’t say what is best for you and I can’t say if your experiences will be the same as mine.

Before I was formally diagnosed with vaginismus & vulvodynia, or rather its specific sub-type, vulvar vestibulitis, alternative therapy was the first thing I tried before anything else. I know self-diagnosing is generally frowned upon, but I knew something was wrong, and these pelvic pain conditions were the only thing that made any sense. The later diagnosis would confirm my suspicions. But until I could get in for the appointment with the vulvovaginal specialist, I felt like I was doing nothing in the interval. My mother had good experience with acupuncture for back pain, so I started seeing her acupuncturist.

I had a couple of reasons for making this decision. One, my mom did well with acupuncture for back pain, so I figured it might be worth a shot.
Two, often when diagnosed with medical problems, be they chronic or acute, sooner or later someone is going to recommend trying alternative medicine.  Vulvodynia is no different. I don’t think it’s fair to say that only one way of treating health conditions – Western medicine or Alternative products – is inherently “Better” than the other. Both can be used for good. They can even be used together. On the flip side, like it or not, both types of treatment can also be misused.
My third reason – just in case my suspicions turned out to be wrong, and vestibulitis & vaginismus were not the reasons for my pain, these alternative treatments would probably do me very little harm. I would probably suffer no long-lasting side effects on my body. There was little long-term bodily risk – I’d just burn through a wad of cash.

So I gave it a try, roughly late summer 2006.

My acupuncturist has a degree in medicine, so he is a bona fide doctor familiar with the the science of the body and he can write prescriptions. He is also a licensed chiropractor and his practice offers other therapies as well, including homeopathy, massage therapy, and NAET therapy (supposed to treat allergies.)
Some of these practices are more controversial than others. I haven’t tried the other alternative options. But it’s there if you’re interested.

When I first went to see him, my alternative medicine doctor took a pretty detailed history from me & explained what acupuncture and homeopathy were & what to expect with it. I had already taken an alternative medicine class in college, so I I was already familiar with what to expect.

Acupuncture would take awhile to see any results and would require repeated visits. The doctor would stick very fine needles into certain points on my body, which, in terms of acupuncture, is supposed to free up clogged energy channels. How it works in scientific terms, I’m not so sure although I have some ideas.
Homeopathy would involve taking a substance that would normally cause symptoms (ex. Candida albicans,) diluting the hell out of it (to the point where there probably wouldn’t even be any of the original substance left in a solution,) and having the patient ingest that. The idea is “Like cures like,” at least in tiny (or non-existent) amounts.

Meanwhile, I tried to explain to the doctor what my problems were & what my goals for treatment were.

The thing is, this doctor – acupuncturist – chiropractor – is not a specialist in vulvovaginal disorders. I am still probably the only patient he has ever seen who was diagnosed with vulvar vestibulitis. I know this, because he was not familiar with this condition when I started seeing him. I had to explain it to him. He was slightly more familiar with vaginismus, or maybe that was just easier to understand – muscles tensing down. Okay that makes sense, he sees patients with muscle spasms frequently… It’s just that my muscle spasms were in my pelvic floor & vagina instead of in my back, neck & shoulders. Still, same principle, right?

At first, the doctor was convinced that my underlying problem was a yeast sensitivity. I must have a yeast infection since that’s what caused vulvovaginal pain so often in his other female bodied patients.

So he tried treating me as though I had a yeast infection. Even though I had been screened for infection by the gynecologist. All clear.

Treating me for a secret yeast infection wasn’t a completely baseless idea. There are some doctors who believe that yeast can lay mostly dormant yet still cause problems in some individuals. If that’s the case, then it makes sense to treat for yeast.

But it didn’t work on me.

I’d already been screened for yeast infections by my gynecologist, and would be screened again at the specialist’s. Nothing – no bacteria or fungal overgrowths. Whatever was causing the redness in the vestibule, I cannot know for sure. Too many variables were going on at once – I had been treated for a bacterial vaginal infection recently but the redness had been there for awhile before that. I had used some prescription topical steroids on my vulva in the past. I had been on hormonal birth control. I had experienced more than one injury to the posterior fourchette. I had noticed but not understood some vulvovaginal irritation as a little child. I had never been able to use tampons, etc.
There was way too much shit going on downstairs to pinpoint any one culprit.

The test for yeast sensitivity at the alternative medicine doctor’s office was one of the more interesting tests I’ve had… My memory is a little jumbled after this many years but what I remember is,
He had me lay down on a table, hold either a magnet or a bottle of some substance, or possibly both, in my hands, over my abdomen. The bottle was filled with potential allergens (such as Candida albicans.) He lifted my arm up above my head & asked me to keep it rigid. I can’t remember if I was holding a magnet or a bottle anymore or if he was holding the bottle or a magnet but I know each of us was holding something. When he passed either the bottle or magnet over me, if my arm became weak, that reaction indicated I had a yeast sensitivity.

Based on my reactions during this test, he recommended a homeopathic antifungal regimen. At first he wanted me to use YeastAway treatment vaginally but I said “No way” – that would hurt me too much to insert. So instead he had me try two oral solutions. Aquaphase A, and Candida albicans D-83. I placed a small amount under the tongue and let it dissolve into the rest of my saliva.

So for about two months, I tried homeopathy & acupuncture in conjunction. I’d go in for acupuncture about twice  a week. During acupuncture, the doctor targeted various points. I remember that a few, but not all, of the points were associated with the female reproductive system – points that, in terms of acupuncture, connect to the uterus and ovaries. I guess those are problem points for many of his female patients, but not for me. I tried to communicate this to him, but at that time, I was still not completely comfortable saying “My vulva,” and “vagina,” aloud. Still, he tried targeting points that connected to my vagina as well – these needles went in my ear. He tried targeting my mood (forehead needle), which was understandably depressed and hopeless.

I do not believe that acupuncture is entirely free of side effects. To this day, I feel those needles when they puncture my skin. I feel each and every single one of them. I do not like this feeling. Puncturing some points make me wince. The doctor cannot put any needles in my ankles at all, because I will reflexively kick out. I don’t mean to do that, it just happens.

I experience one visible side effect of acupuncture: Bruise marks. When those needles go in and get twirled around a little, I bruise. Sometimes the acupuncture points bleed, although this is rare. But after acupuncture, I always have some bruises for days, especially on my legs.

That’s not the only side effect of acupuncture, although the other “Side effects” I experience may as well be called “Side benefits.”
Acupuncture makes me chatty. Normally I am a very taciturn, introverted person. After acupuncture, for a few days, I tend to be more talkative and outgoing even if I have nothing interesting to talk about.
Another measurable side benefit is that, acupuncture reduces the amount of nasal discharge I produce. While I do not have any seasonal or pet allergies that I know of, nonetheless I tend to use tissues more than my co-workers. I never really noticed it until I started going to acupuncture and stopped reaching for the tissues every day.
The last side benefit, which may be linked to a reduction in pain – my more recent experience with alternative medicine is that, as pain falls, my libido rises. It will probably never return to the levels I had during those pre-vulvodynia days, in high school when I was blissfully ignorant of what lay ahead of me. But my libido iss… higher. When I’m in pain, my sex drive shuts down.

But…

The first time I tried these alternative treatments, late summer 2006, the acupuncture & homoepathy did not make a dent in the vestibulitis. Nope… still burning, stinging, itching. Definitely no change in the vaginismus either.
It didn’t work. It wasn’t doing anything.

At $80 for each acupuncture visit after insurance, plus the price of the homeopathy which wasn’t covered at all, after awhile it was got too expensive for me to maintain the alternative meds as a poor unemployed college student. With no change in the severity of the vestibulitis or vaginismus, I could no longer justify the cost.

So my first experience with alternative therapy for vulvar vestibulitis/yeast was not good. It wasn’t working. I felt then and still feel now, that waiting 2 months for even a minor change, was enough time.

So I stopped.

And threw my lot in with conventional Western medicine.

And that… worked out okay. I tried the hormonal gel, had surgery, started dilating, and I felt… better. Things were becoming less painful. The vestibulitis was moved to the backburner & I started focusing on the vaginismus instead. I started dilating.

Then some months later, I had some weird mysterious, generalized pelvic pain that was definitely not vestibulitis spring up. Never felt anything like it before or since. I’m still not entirely clear on what that mystery pain was or what triggered it. Stress? Muscles tension? High heels? Nerve compression? I don’t know. It wasn’t an infection, & it felt deeper inside of my pelvis than the vestibulitis had. It radiated into my butt & down one leg.

Since the new pain was a mystery even the vulvovaginal specialist could not address, I went back to the acupuncturist. And this time, I agreed to give chiropractic work a try too. No homeopathy this time though.

So I have had experience with alternative medicine for pelvic pain, twice.

For some reason, this time, the second time around, the alternative treatment worked much better. It did not provide a cure, but it was palliative until I could start seeing a physical therapist. Once I was doing acupuncture, chiropractic, AND physical therapy, my progress sped up even faster and further.

I actually prefer the chiropractic treatment to the acupuncture. It takes less time and I don’t feel exposed as I do on the acupuncture table. It’s an interesting therapy – the chiropractor throws me around in ways which probably look frightening to an outsider. It doesn’t hurt. It’s not required that the bones make an audible “Pop!” or “Crack!” but mine do. The doctor noted that it looked like my pelvis was probably out of alignment, and so he tried to correct for that. Sometimes he used a “Clicker” to make an impact on either side of my pubic bone. That doesn’t hurt, and it seemed to make a slight improvement. Some of my muscles were weak initially as well, notably the abductors & my abs.

After awhile – and especially after I started physical therapy – the doctor needed to make fewer adjustments with my return chiropractic visits, and I was able to taper down on how often I received it. I guess my pelvis was starting to maintain a better alignment for longer periods of time. My muscles were getting stronger.

I only experienced a side effect of chiropractic twice – a little soreness the following day, the first time I tried it.

This time around, even the acupuncture seemed to work better.

It took some trial and error, but eventually I discovered that the acupuncture worked best if I had the treatment done laying face down, with my back exposed. A lot of needles are put into points along my legs.  I overhear the doctor say he is targeting points associated with ‘Liver nine. Liver seven. Kidney lines.” I don’t know if I’d be able to point out each little point on an acupuncture chart, but I have a general idea of where they go.
He usually places some needles in my back too, although fewer go in my back than on my legs. When they do go on my back, the most awkward needles are the ones that puncture the back of my hips – it’s just above my buttcheeks. It doesn’t hurt, it’s just a little embarassing.

At one visit a few months ago, I was stagnating since the last chiropractic & acupuncture session. I felt like I more pain than I had been for a few weeks. The doctor hooked up a TENS machine to two acupuncture needles. The TENS machine sent an electrical current into the needles, and into my body.

That made a huge difference in my pain levels. The result was almost immediate and it lasted for a long time – about two or three weeks.
I only needed TENS therapy twice. It never hurt. I’m really impressed with how the TENS worked out for me, but I don’t know if it’s right for others.

I still receive chiropractic & acupuncture to this day, although I’ve tapered off to one visit every few weeks. That’s a maintenance schedule. If I have an acute problem spring up, I can run in for an adjustment & needling.

Overall I do not feel that chiropractic & acupuncture makes my immune system any stronger. I still got sick while receiving regular chiropractic & acupuncture treatments. I still got colds. I still got pink eye. I still got a vaginal infection recently. It worked okay as pain management the second time I tried it. But as far as my immunity goes – no effect.

And it is an expensive treatment. I can afford it with insurance, and my practice offers bulk packages that shave a little bit of the cost off if you pay up front. But it’s not cheap and it’s not free. There’s always a price to be paid…

Theoretically, the cost of treatment may be lower than the cost of missed work days and having to pay medical bills out of pocket without insurance. But even with the best insurance program I was on, chiropractic & acupuncture was still $50/visit. The worst insurance I was on (for a long time too,) still forced me to pay $80/visit, and I was going in up to twice a week! That really cut into my paycheck! And my job at that time didn’t pay well. In my head, I can definitely imagine it being cheaper, even long term, to use conventional Western medicine & prescriptions to manage vulvodynia pain.

So I spent a lot of money alternative treatments. A lot of time, and a lot of money.

Currently I do not need to take any prescription medication to manage my v pain – except for treating infections. But I do need a prescription for physical therapy.
As of now I have not had a prescription for tricyclic antidepressants, pain management pills such as vicodin, or anti-seizure medication.

That does not make me a better person and that does not make my body inherently superior to anyone else’s. If my chosen treatments had not worked I would probably be on medication. That could still happen down the road, too. I’m not out of the woods yet.

And that is what happened. That is my experience with alternative medicine for treatment of pelvic pain. For me, and me only (because I cannot say what your experience will be like, if you choose this route,) it did not have a measurable effect on vulvar vestibulitis. It does not seem to have much of an effect on the vaginismus, either. It makes me chatty and reduces nasal discharge. It worked well on some strange, deep, radiating pelvic pain, and was complimentary to physical therapy. It worked well when in used in conjunction with a TENS device. As it worked, my libido increased slightly but noticeably.

I will maintain for awhile longer but hope to be able to taper off more and more as time goes on, and maybe drop it altogether when I feel ready. If I feel ready.

Things that make me angry – Exploiting vulvodynia patients

07/14/2009 at 6:17 pm | Posted in Uncategorized | 2 Comments
Tags: , , , , , , , , , , , ,

What would you say if I told you there was a single, definite cause for vulvodynia? What would you think if I told you that, in finding the cause, there was also a prevention or another possible treatment available?

Would you say “That’s too good to be true?” Would you look through the years worth of messages posted to online support communities – the discussions of pain, possible causes, treatments and hope? Would you think about the other patients you know online (and maybe even in person) and wonder if all this could be caused by a single common factor? Would you think back to the journal articles & books you picked up along the way?

What would you do?

Because I know I would do all those things – say “It’s too good to be true,” then reflect on what other patients and doctors are saying, thinking about their experiences. I would remember the quetions as to the origins of this and related conditions, and sometimes, why there is some overlap. I would (and did) browse through the books & journal articles I’ve accumulated over the years, and I questioned whether this syndrome could have a single root cause, when so much of the literature and real life experience allows for plenty of wiggle room.

And I wondered, who could have discovered a single root cause? A researcher? One of the vulvovaginal specialists? A team of patients? Did CureTogether actually find The Cure?

No, the discovery of a single root cause for vulvodynia was found by a semi-retired doctor of philosophy and author of  diet books.

Wait, what?

Needless to say, I, for one, am skeptical.

Hmm…

Let’s take a look at this idea and what, if any, analysis we can make of it.

It all begins with,

Doctors just love giving medical conditions fancy names with Latin roots to make us tremble when they give the diagnosis. Vulvodynia is one such word.

And right away things look a bit strange to me.

Yes, the doctors are trying to scare us and they take a sick delight in doing so by making up big, scary words. The doctors want to make us tremble with fear. It couldn’t possibly be the severe, debilitating pain interfering with quality of life that is so upsetting.

I must truly be the outlier, the different one, because in my experience, it was not the word itself  but the meaning behind the word that scared the everliving shit out of me. A rose by any other name would have smelled just as sweet.

My regular gynecologist was reluctant to give the diagnosis of vulvodynia, because for one thing it’s not exactly easy to treat. She was visibly frustrated when she called me into her office to give the tentative diagnosis & refer me to the specialist. For another thing, she knew she was not a specialist in vulvovaginal pain. While she could provide pap smears and medication for acute infections, and could deliver babies, she knew she was unprepared to guide me along the road to treatment. For another thing, she knew that road I was about to take was going to be long & hard and fraught with “Here be dragons!”

There was no love, no delight in her eyes when she pronounced the word.

But what is vulvodynia, anyway? What was going on in my vulva? A brief description:

The condition typically presents with stinging, burning and/or itching sensations that can really zap a woman’s sense of wellbeing.

I’m not going to argue with the last statement, that vulvodynia can interfere with how patients feel about themselves, since, there’s no denying that I
certainly got knocked for a loop. However, Appleton’s description does not state that the pain takes place in the vulva; it just describes what it feels like, and the title of the page is awkward, shy.

However I’m not clear on whether Appleton is talking about true vulvodynia or vulvar vestibulitis. To be fair though, I, too, have a tendency to use the two terms interchangeably, but I at least try to use “Vulvodynia” as a broader blanket term to include pain besides vulvar vestibulitis. Perhaps that’s what’s going on here, but the difference could be important: If Appleton found treatment for vestibulitis, would it also work on general vulvodynia? Or vice versa? or

At any rate, it’s not surprising that women with sensations like Burning, stinging, and/or itching in their genitals might want to seek treatment:

Is there a cure or treatment? Mainstream medicine has been slow to come up with a definitive answer.

Indeed, although the medical community has been vaguely aware of vulvodynia since about the 1800s (and possibly even longer,) it’s really only within the last 20 or 30 years that serious research has been done. And since it is still not fully understood what causes vulvodynia & related conditions in the first place, there are various treatments in place. What works for one patient, may not work for another. Furthermore, some patients may not be comfortable with certain treatments, so it’s worthwhile to have a lot of options open.

So what treatments are patients trying? Appleton touches upon an article published by Dr. Barbara Reed in 2006. The article, Vulvodynia: Diagnosis and Management, is aptly named – it gives an overview of what vulvodynia is, how to determine if a patient may have it, and what treatment options are available.

Luckily, you and I can read the article in question too, for free.

Back to the question of whether or not there is any cure or treatment available. Researcher Reed’s outlook is generally positive:

Most women experience substantial improvement when one or more treatments are used.

And the article eventually presents a Table 3, a brief overview of what treatments patients can investigate. However, Appleton isn’t impressed with way the article “meanders through discussions of nerve sensitivity, cognitive behavior therapy and pelvic floor muscles.” Instead, she seizes upon this opportunity to point out what “tidbits” her research in nutrition has in common with Reed and other researchers’ findings in vulvodynia:

inflammation, immune system, allergies and diet.

If you will look closer at Reed’s article though, it states,

There is controversy about whether changes exist in the inflammatory infiltrate in vulvar tissue of women with vulvodynia. Some studies29-31 found an increase in inflammatory cells or mast cells, whereas others32,33 found that inflammatory cell infiltrates were similar in patients with vulvodynia and control patients… The cause of this increased neuronal density and its role in vulvodynia remain unclear.

So even the medical doctors don’t know why some patients experience inflammation in their vulvar tissues and others don’t, and even the medical doctors don’t know why that inflammation, when present, occurs.

As to the immune system response, it may be worth noting here that some patients with vulvodynia deal with overlapping chronic conditions, which may be related to the immune system functioning – enough patients deal with possibly related chronic conditions that the NVA participates in the Overlapping Conditions Alliance. Reed’s article states that some research foundminor immunologic changes” in vulvodynia patients, which “could result in a decreased ability to downregulate the inflammatory response, which in turn may be associated with neuropathic changes.”

The only place in Reed’s article where allergies is mentioned at all is in a diagnostic table as a differential diagnosis. The possibility of allergens as a cause for vulvodynia is not explored in detail in this article.

Still, there are three key words mentioned in Reed’s work that fit in comfortably with Appleton’s own research in diet & nutrition. Appleton notes that a diagnosis of vulvodynia requires there be no active yeast infection found in vaginal cultures (No word on the fact that the diagnosis also requires that there be no active bacterial infections.) So she asks (as I’m sure many patients themselves ask, hoping against hope for an easier answer,) whether it’s possible that doctors miss yeast infections during their cultures:

Can the yeast infection change form and continue to cause pain in women after the topical ointment has killed off the infection, which typically is found on the surface?

The answer is yes, according to Majorie Crandall. This actually looks like a pretty interesting piece of research. Crandall’s work suggests that “Any red, burning, irritated tissue for which there is no identifiable cause should be considered a candidate for the diagnosis of the red form of candidiasis,” including the redness that is sometimes found with vulvar vestibulitis. For vulvodynia patients, that means it might be worth looking into treating a yeast infection that’s hiding deeper in the skin.

There’s a couple of issues I have with Crandall’s article though. For one thing, not all patients with vulvodynia experience redness in their vulvas. I did, and the “-itis” suffix on “Vestibulitis” is there to indicate “inflammation.” But the medical community is moving towards a more inclusive term, “Vestibulodynia,” because redness is not always found in vulvodynia & vestibulitis patients. Crandall’s seriousness table says “Vulvodynia = vulvar vestibulitis,” whatever that means since although they’re related, they’re not technically the same thing… and she has vulvodynia & vestibulitis classified under the “Annoying = Benign = Superficial candidiasis” category. Well maybe this is just me speaking out of anger, but I for one don’t consider vulvodynia & vestibulitis to be “Annoying” or “benign.” Maybe she just means it’s not serious in the sense that, it’s not a terminal illness.

Crandall doesn’t cite her own research on this page, which annoys me to no end for a couple of reasons. One, because I’m genuinely interested in knowing which controlled clinical studies have provided evidence for the candidiasis hypersensitivity syndrome,” and which ones show that SSRIs & cough syrup may have antifungal properties. Two, Crandall dismisses vulvodynia treatments including surgery, biofeedback, the low oxlate diet, and estrogen gel, as being “Barbaric,” “Unproven,” “Invalid,” or as causing more yeast infections. The thing is, while I’ve heard of some doctors who will aggressively treat yeast long-term just in case it IS a problem for vulvodynia patients, I’ve not seen many controlled studies on that myself – if I have run across such studies, they’re few & far enough between so that I can’t remember how they turned out.

Back to Appleton’s article. She talks about what it means to the vulvodynia patient if a hard-to-reach yeast infection is causing vulvodynia. How did the yeast get there in the first place?

The answer to that question, according to Appleton, is Sugar.

And indeed, sugar is a possible cause for yeast infections – along with injury, hormones, antibiotics, condoms, clothing, a compromised immune system, etc. etc. etc… it goes on.

Appleton goes on to cite some research about yeast infections dating from the 1970s through the early 1990s. I guess the medical research community is done studying yeast since there’s no recent work included. According to her, ultimately, sugar is the root cause for yeast infections and by extension, vulvodynia. Her article concludes, “Sugar causes everything and vulvodynia is but one more example.” (emphasis mine.) Appleton doesn’t state something like, “Sugar is a possible contributor to vulvodynia,” she puts it forth as a direct cause-effect relationship.

If that’s the real reason for vulvodynia, then the way to prevent or stop vulvodynia in its tracks is clear – eliminate sugar from your diet, thus starving the yeast out. And, maybe try the low-oxlate diet (even though one of Crandall’s articles linked to above says it may not work anyway.) It is not clear to me whether a sugar-elimination diet will eliminate the rare but still infectious strains of yeast besides Candida albicans, as that is the only species Appleton explicitly mentions in her article.

Of course, eliminating sugar isn’t an easy or comfortable thing for most people to do. Luckily, Dr. Nancy Appleton is here to help you by providing sugar elimination diet-related materials, for a nominal price.

…Does this look just a a conflict of interest to anybody else? Am I the only person here who finds it just a bit suspicious that Appleton, the author of not one but two books about sugar elimination diets and a seller of various other goodies, puts forth sugar as THE cause for vulvodynia?

Is anybody else just a little bit disturbed that someone who is not a medical doctor (M.D,) a gynecologist, a vulvovaginal specialist, or a vulvodynia patient advocate, claims to have found THE cause, and, coincidentally, a way to stop it from happening?

Maybe it’s just me, but when I see things like “Sweet suicide,” and “Sugar kills,” I can’t help but think that maybe there’s a little bit of fear mongering going on. Appleton’s article states, “An allergy is merely a precursor response that can later develop into whatever disease comes next,” meaning, that if you keep eating that sugar, you will eventually develop a debilitating disease. You may not have vulvodynia yet, but you will. Keep on eating all that junk food and you’ll be digging yourself an early grave.

What do you think?  Is it just me? Am I being paranoid? I don’t know, I’ve been wrong before. But dietary changes didn’t seem to do much for me when I was dealing with the worst of the vestitibulitis, and it doesn’t seem to have an influence on the vaginismus. I mean, I cut caffeine out, sure, and I maintain a little bit of a high-fiber diet post-vestibulectomy. I added probiotics to my diet as well, something that appears nowhere in Appleton’s article.

But even I was inclined to drastically change my diet,

I think I should probably talk to my doctors first. Doctors who are more familiar with vulvodynia and my own physiology. And then, even if they say, “Oh yes you should definitely cut all sugar & seek help doing so since it’s so hard,” I think I would avoid Appleton’s plans.

Becasue I’m not fond of being marketed to in this way.

It’s a bad way of furthering research on vulvodynia, because any valid point Appleton may have about diet, allergies, and yeast, is overshadowed by the fact that she positions herself to earn money off of vulnerable patients desperate for a cure. I suppose that’s true of almost any medical research, and it’s actually a giant bone of contention for some doctors researching female sexual dysfunction in general. That’s one of Dr. Leonore Teifer’s concerns – that pharmecutical companies sponsoring research into sexual dysfunction stand to earn big money if a treatment or cure is found. The thing is so much treatments available for vulvodynia now, use what is already available – there is no magic pill for vulvodynia. There is no single cure. I want there to be one. I want there to be a prevention.

But not like this! Not if it means using scare tactics and telling patients that they are literally killing themselves a little bit every day, and the only way out is your way, which by the way you can participate in if you just pay a small fee…

On the flip side, Appleton’s marketing also targets women who don’t have vulvodynia, by holding it over their heads as a threat if they keep eating the way they do.

Another problem I have with Appleton’s page is that, nowhere on it does she mention the existence of the NVA & its efforts to further controlled research studies on vulvodynia. If you want to explore sugar as a possible causative element in the development of vulvodynia, why not approach the NVA about it? Why not see if there’s interest in starting a study? Why not make a donation? As it is, spending money on Appleton’s diet program diverts needed funds away from bona fide research efforts.

The thing is, I know this is just but one example of websites and blogs targeting and schilling questionable goods & services to vulvodynia patients,and certainly it is just one of many ways in which chronic conditions in general are subject exploitation. Appleton doesn’t outright claim she has found the cure for vulvodynia, but this program implies that her research has found a direct cause-effect link, and that has been kept hidden from patients by the medical community. I’ve seen other websites hawking goods and treatments of dubious validity for various chronic ailments. I absolutely love a post up at ChronicHealing in which the blog writer, Jeanne, picks apart suspicious claims made by the Endometrosis Foundation of America.

I don’t have a problem with investigating hidden yeast infections as a cause for vulvodynia, I don’t have a problem with investigating a low-sugar or candida elimination diet. But if those are going to be listed as possibilities, the research needs to be done in repeatable & verifable conditions. It needs to be published in a peer-reviewed journal, and subject to scrutiny & improvements. And at the same time, we need to let patients make their own informed choices about treatment, and not scare them into going down one route, wallets open.

Nothing like an infection to knock me down a few pegs

07/02/2009 at 4:30 pm | Posted in Uncategorized | Leave a comment
Tags: , , , , , , , , , , ,

I was recently diagnosed with both a bacterial & yeast infection. This is the first known infection I’ve had since the surgery a few years ago. It will probably not be the last. Although I try to prevent infections, and I’m not having sexual relations with a partner right now, I still got sick. Where it all came from, I don’t know. Whether or not the meds worked to treat it, I don’t know that either. I finished the medication, an oral antibiotic for a week, then an insertible cream for 3 days.

I don’t know whether or not they worked.

As I said before, I have a wide range of normal. Sometimes I feel like I still don’t know what “Normal” really is, having lived with abnormal for so long. I’m probably not the best judge of what a “Normal” vagina & vulva feels like. Plus, so far my infections don’t cleave to the textbook definitions & symptoms. I prefer to return to the gyno for a follow up appointment in a few weeks so I can know for certain whether or not the “Coast is clear,” so to speak. I’ve had issues with bacterial vaginosis sticking around after using medication before. I don’t want that to happen again.

My thoughts about the medication: I am happy & surprised to report that the antifungal cream did not cause any noticeable negative side effects. I applied a small amount before using a full dose as a test patch and I did not react. Then I used the whole dose and still did not react. However I know that that does not necessarily mean it is safe for me to use the cream later on. You can develop a sensitivity to medications over time, the more you’re exposed to them. I must exercise caution in the future.
Using the cream was a strange experience. The applicator was skinnier than my smallest dilator. I would have actually been more physically comfortable inserting something wider & more tapered. The medicine applicator was so small it felt like it was poking me.
However the antibiotic was not without side effects on another part of my body which I would prefer to not get into here because I’m embarrassed about the side effect. I called my gynecologist about the side effect and apparently I’m the first patient of hers to experience this. Even though what I have going on now and am trying to self-treat at home is a pretty common & predictable side effect.

I wasn’t able to dilate (among other things) since I started feeling off. I was able to do my pelvic floor exercises, and get some Biofeedback done at physical therapy, but no internal work. No sense aggravating whatever’s in there with lubes & proddings.
Unfortunately I have fallen back on my Biofeedback strength. It’s still stronger & more consistent than it was when I first started though. I can still control the muscles. But not to the same degree as I could a few weeks ago. I’m not surprised. I wasn’t feeling well. How can I control the pelvic floor muscles & tell them it’s okay to relax when in my own conscious mind *I’m* not relaxed?

I was afraid. I still am.

The “What if’s” come to mind. What if the infections don’t respond to treatment? What if treatment makes it worse? What if it comes back? What if the gyno becomes visibly agitated having to deal with me repeatedly over a short span of time if I keep returning for help? What if the gyno thinks (and acts like) I’m wasting their time?
What if my toys & gear have been contaminated? What if this or a future infection causes a vulvodynia flare? What if the tissues are still inflamed and stay inflamed, like they did when the vestibulitis was at its worst? What if the first time I had pain-free intercourse a few months ago, was also the last?

I feel like there’s a lot at stake – I made some real, measurable progress over the last few years & I don’t want to backtrack. I don’t want to feel that pain again. Or the itching & irritation. Or the referred pain that ran down my leg…

Maybe I’m over thinking things again. I know that I have other intimate activities available to me and my partner if intercourse is taken off the table again. I know. I know it’s all meaningful & intimate. In my head, I know it.
Yet intercourse remains significant to me, perhaps because of its rarity & difficulty obtaining. I can never say “It’s not that important,” because I know it is. I worked really hard to open the door on this option. And even I can’t turn off all the mixed messages about sex in the media. Some days its easier than others to tune out the media & how much emphasis it puts on penis-in-vagina sex. Other days, the messages break through and I hear them, and below the messages I see the tendrils of patriarchal, intercourse-centric culture forming the words. I see it… but I still hear it. Sometimes the words stick to me and I feel their weight pulling me down into insecurity.

How do I maintain a balance between this one act’s personal significance and all other activities I can engage in with my partner? How do I calm my frayed nerves & *know* that life will go on?

How will I cope if, down the lines, things really start detonating with age? What if something happens health-wise that goes beyond whether or not I can have intercourse? Something bigger, something more life-altering… something I can’t roll back the clock on.

Coincidentally there were some comments at a sex therapist’s blog that address what’s going on in my mind. The comments resonated with me more than the posts themselves. I’m still feeling turned off to the idea of sex therapy for me personally, and I’m not jiving with what I’m reading between the blog’s lines. I’m hoping I’ve been exposed to enough interesting ideas & am open minded enough so that I won’t need sex therapy down the road.

It started with someone who’s actually been there, articulating what it’s like to be the partner in a relationship where one person has a chronic illness or disability that affects (among other things) their sex life. And then another comment. That’s a real possibility. It’s a possibility for anyone. It’s relatively simple to talk about sex but it can be so much harder in practice to execute. I can’t forget that.

I saw a glimpse of my own sexual mortality in this infection. I may be living on borrowed time here. The redness, the discomfort… knowing something isn’t quite right. I went through it already. Is that how the beginning of the end shall be, perhaps months, years, or decades from now? Was this infection really just an infection, a common bug that lots of people get from time to time, no big deal? Or was it something more significant, something, a premonition of things to come…

Or maybe everything will work out better than expected.
Maybe the medication worked just perfectly fine and everything will be okay. Maybe now that I’ve experienced this, I’ll be better prepared to handle future problems.

But I tend towards pessimism.
It’s harder for me to remain optimistic when things aren’t going exactly to plan. It’s easier for me to be optimistic when it is least important for me to do so. When I need hope the most, is when it’s hardest for me to find it. I don’t mean to. It’s part of my personality. It’s a form of self-preservation. Bracing myself against a potentially bleak future.

I like video games. I like comics. Why am I bringing this up here on a feminism-FSD forum in a seemingly unrelated post? Sometimes, these silly games and pictures contain The Answer. Or The Question. I conclude with this statement because the creators of Penny Arcade put it best…

Why do I continue forward even though  I already know how the game is going to end?

I never said I didn’t struggle emotionally, mentally, physically. I never said it was easy.

Dealing with a dreaded infection

06/20/2009 at 2:50 pm | Posted in Uncategorized | 1 Comment
Tags: , , , , , ,

It is difficult for me to determine when something is genuinely wrong with my vulva & vagina.

I have a pretty broad range of what “Normal” feels like. Whether or not this range is broader than that of the average female-bodied person, I do not know. I’ve experienced painful sex and may continue have run-ins with it for the rest of my life – although my hope & goal is that this will become increasingly rare & manageable. I’ve dealt with long-term vulvar itching. I know I struggle to control my pelvic floor muscles & that if they are left to their own devices, they tend to constrict & tighten.

TMI follows… Continue Reading Dealing with a dreaded infection…


Entries and comments feeds.