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.

Advertisements

11 Comments »

RSS feed for comments on this post. TrackBack URI

  1. […] natural remedies alone didn’t make a satisfactory improvement in the pain levels, so I wound up turning to […]

  2. […] practice rather than a medical degree, has helped some IC patients in the past. And yes, even I have some experience with alternative medicine. I do not currently have IC though so hopefully I will never have a need […]

  3. […] natural treatment – Oldie but goodie, this is still a very popular post! People translate it into all kinds of languages! Wow, I guess alternative treatment for vulvodynia […]

  4. As to the high cost of acupuncture – take a look at Community Acupuncture! These clinics charge on a sliding scale, often starting at $15 per treatment! For the N. American Community Acupuncture co-op site check out: http://www.POCACoop.org

  5. Thank you so much for writing this. I’ve been living with pelvic floor muscle tension myalgia and vulvar vestibulitis/vulvodynia for the past eight years (or that I can remember; I seem to remember having problems as a child and not quite understanding where it was coming from exactly).
    I’ve undergone probably hundreds of tests thinking that the burning/itching/throbbing/redness/tearing of the skin/ etc is from an STD or a yeast infection… when they all come up negative the doctors have even been known to tell me “it’s in my head.” Sex has always been painful, and I hate to admit that I am too embarrassed to share with anyone aside from my boyfriend that I suffer from vaginal pain. I am using dilators at home, and they help, but as soon as I have sexual intercourse, the pain intensifies and burns ten-fold for several days after that… and often times causes BV. I feel like my whole life is consumed by this condition and that I’m the only person who has ever dealt with the cascade of problems that it causes (depression, anxiety, self consciousness, $$$$, medicines, doctors, low sex drive, relationship problems, resentment, TIMEEE…. I mean the the list can go on for days!).
    Thank you so much for sharing your story, and letting people like me know that there are others out there who suffer from the same exact thing, but who can also be brave enough to talk about it!!

  6. Hi

    I am just recently learning to cope with this horrible disease/condition that is ruining my life an my children’s… What type of surgery did u have?

    Thank you for your post.

    • I had a vulvar vestibulectomy. It seems to have worked out okay in the end!

  7. So sorry to hear that this didn’t work out for you. Even within the natural health community, this syndrome is not well known and only those of us who find a special interest in treating these disorders pursue in depth study. That said, the diagnosis you received is not a diagnosis found with in Traditional Chinese medicine and thus your treatment was not true to Chinese medicine. Also, regardless of M.D. status most chiropractors only take a short course on acupuncture (about 200 hours- same goes for physical therapists who practice so called dry needling) compared to truly qualified practitioners who complete a Master’s Degree program. Here is a great article about how to choose and acupuncturist. Best of health to you!

    http://weeklycupofqi.com/2013/12/19/how-to-choose-an-acupuncturist/

  8. Could you please share with me the name and contact details of the chiropractor who helped you with this? Also, which city he is based out of? I have been suffering since a year and a half now and it is really painful. You can mail the details to me on my ID pauljerrica@gmail.com

  9. Does this mean you feel cured from vestibulitis/vulvodynia? Or is still a constant struggle? How much did the surgery help?

  10. This is a very well-written and well-reasoned article, but a few observations:

    1. It seems to me surprising that one doctor would practice so many different forms of medicine, many of which have vastly different underlying rationales and are thus very difficult to reconcile sufficiently to practice them in tandem.

    2. Even if one does practice many different modes of treatment, it seems to me that to combine several of them in a single treatment makes it very difficult to know which one of them worked (in the event that there is in fact any improvement).

    3. I didn’t completely understand the paragraph about the acupuncture points used, but perhaps the practitioner ought to have explained that, because of the ‘channel system’ theory of chinese medicine, it is not in fact necessary to place needles in close proximity to the affected area, one can place them above and below the affected area, as long as they lie along one of the lines or ‘channels’ that is believed to pass through the affected area. As counter-intuitive as it may seem, there is no added benefit (though there is certainly added embarrassment) in places needles at the affected area, in a condition like this.

    4. The fact that he seemed to insist on treating you for a yeast infection is again not unreasonable from a chinese medicine point of view (though it is from an orthodox medicine perspective) because in chinese medicine, the treatment for vulval discomfort and yeast infections is rather similar- especially with acupuncture. However, he should have explained that to you clearly.

    5. With respect to the second round of acupuncture treatment on the back, that is a very unusual approach to use for this condition. I’m not saying it wouldn’t work, I’m just saying it’s very unorthodox, and again, having chiropractic at the same time, makes it difficult to know if the positive outcome was the result of acupuncture or chiropractic.

    6. I think it’s a good idea to supplement personal experience with clinical research. One could begin here, with the first paper published in English on the use of acupuncture for vulvodynia, the full text of which is freely available:

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1297434/pdf/jrsocmed00003-0037.pdf


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s


Entries and comments feeds.

%d bloggers like this: