you're reading...
chronic pain, diets

The low oxalate diet and vulvodynia: how a case report becomes snake oil

Restrictive diets, the most common being the low oxalate diet, are widely reported in the lay press and on-line for vulvodynia (a chronic pain condition of the vulva). In one study, 41% of women with chronic vulvar pain reported trying a low-oxalate diet.

The only problem? The low oxalate diet doesn’t work.

How this diet became almost main stream is a testimony to lack of evidence, desperation of patients, inadequate evidence-based therapies, and snake oil. A perfect storm.

Calcium oxalate crystals in the urine

The whole idea that oxalate could potentially have a role in vulvodynia stemmed from a single case report published in 1991 in which a woman with refractory vulvodynia was found to have periodic hyperoxaluria. For this one patient, the addition of calcium citrate alleviated symptoms. Calcium citrate binds oxalate, therefore preventing it from irritating the skin/nerves during urination – the mechanism of cause and effect proposed in the case report.

A single case report and somehow it gets recommended. Initially by word of mouth, by both patients and providers and then later on web sites and chat rooms. Someone writes a cookbook about the diet and someone offers 24-hour urinary oxalate testing. You know, for a price.

However, we know that dietary oxalate consumption appears to be the same among women with vulvodynia as compared with controls and a prospective study of urinary oxalate levels in 130 women with vulvar pain and 23 controls found a similar distribution of oxalate levels between the two groups. In studies looking at a low-oxalate diet, improvement in pain ranges from 2.5% to 24%, which is equivalent or worse than the placebo response rate in other vulvodynia studies. In addition, women with kidney stones (and have high levels of oxalate in the urine) do not have appear to have a higher incidence of vulvodynia.

I would guess at least 50% of my patients with vulvodynia have tried the calcium oxalate diet and perhaps 5-10% felt it helped. A far worse outcome than placebo effect. Many of my patients spent money on the cookbook and others spent even more money sending 24-hour urine samples to “a special lab in Colorado for oxalate testing.”

Well, you might think. What’s the harm in trying the diet without wasting money on the testing? After all, if it works, it works, right?

The low oxalate diet is very restrictive and many patients get stressed about it (stress is bad for pain). Others feel inadequate because they just can’t do it (also not good for pain, most people with chronic pain don’t need an additional reason to feel bad). It is also better to focus energies and resources on proven therapies, not on a diet where there is a mountain of evidence to disprove both the theory of causation and the effectiveness of the intervention.

Are there any diets that can help women with vulvar pain? None that have been specifically studied. However, women with vulvodynia who have either painful bladder syndrome or irritable bowel syndrome may find relief of bladder or bowel symptoms with specific dietary measures aimed at eliminating bladder or gastrointestinal triggers. Pain in one area of the body makes pain elsewhere worse. So, getting bladder or bowel symptoms under control may help reduce vulvar pain.

But the low oxalate diet and vulvodynia is a cautionary tale about jumping on the results of a single case report. Not much different from Andrew Wakefield’s now retracted and debunked case series on the MMR vaccine and autism. Two things may co-exist, that’s all a case report or a case series tells us. We need¬†prospective studies to guide treatment recommendations.

 

Comments are now closed on this post

About these ads

Discussion

30 thoughts on “The low oxalate diet and vulvodynia: how a case report becomes snake oil

  1. I am a patient with chronic vulvar pain, I’ve been through 12+ docs of differing capability. I finally landed with Dr. Eschenbach in Seattle, and I’m on my way to recovery (finally!), but during the searching I found the low oxalate diet in a study online.

    Like you, with the vitamin E, I just wanted a solution, and gave it a go. I didn’t buy anything fancy, I just adjusted my diet, and did the citracal thing, like the study suggested. For me, there was nothing. The only reference I found was to a study with 30 some women, with some paltry results.

    I discarded it when it was apparent my issue was an immune response, and the treatments I had started with my new doc started working.

    Posted by That gal with a vagina | February 8, 2012, 8:47 pm
    • Good morning, can you please tell me what kind of treatment your Dr. is giving you for your Vulvodynia? I need help really bad I am so deprest.

      Posted by Tammy | December 13, 2012, 5:59 am
    • hello, can you please tell me what kind if treatment your Dr. is giving you for your vulvodynia?

      Posted by Vanessa | March 11, 2013, 6:02 pm
    • I would love to hear about your treatment! I’ve been doing so much research and have been too many doctors myself and haven’t come across anything like that you’re being treated for. The more we all know the more we can all heal :) http://apaininmypelvis.blogspot.ca/

      Posted by Danielle W | November 17, 2013, 8:52 pm
  2. I have suffered with vestibular vulvodynia for over four years. I have tried some but not all of the medical and topical therapies listed with little or no lessening of my symptoms. I started the low-oxalate diet about six months ago and immediately noticed an improvement (>50%) not just in my pain but of the color of my tissue which went from angry red to normal pink. I actually wish that I had not noted an improvement because the diet is highly restrictive and as the author mentions causes me much stress. I hate the diet. Still, when I stray from it I notice a definite worsening of my symptoms. I feel stuck between a rock and a hard place.

    Posted by Pain Pain Go Away | February 25, 2012, 1:14 pm
    • I’m sorry to hear that you feel stuck; this is such a frustrating thing to deal with. Just wanted to say I’m glad you found something that helps, and yes the diet is tough! Best of luck finding a balance that works for you.

      Posted by Kuzcotopia | May 11, 2013, 3:11 pm
    • Would love to hear about your experience with the diet! Ive started a blog trying to get as much info about treatments as possible – http://apaininmypelvis.blogspot.ca/

      Posted by Danielle W | November 17, 2013, 8:53 pm
  3. I have suffered from vulvodynia for 3 years, since the onset of menopause. I refused to try the low oxalate diet when it was first presented to me by my gynecologist as it was so restrictive and seemed to list everything that I ate! I am vegetarian and lean very heavily on greens, beans, berries, sweet potatoes, just about everything on the high list. The pain remained and has worsened and so I finally decided to try it. I stayed on for three weeks, no cheating at all, all very low and low foods, with maybe an occasional medium. It was absolute misery. My bowels immediately shut down and refused to work for the entire three weeks. There is absolutely no way to get enough fiber, naturally, on this diet. Three weeks may not have been enough time, but I could not stand it any longer. For me, it was a bust. The pain didn’t lessen and the stress was horrible. I cried almost every day, looking for ways to eat healthily and get my body back in rythm, but it was just impossible. Thanks for your critique of the diet, and while I am glad for those who have found it helpful, for me it was just more torture.

    Posted by terri | March 4, 2012, 3:18 pm
  4. Thank you for your post on a low oxalate diet. I was recently diagnosed with vestibulitis and the literature that I was given recommended this diet. As the previous post suggested, I am concerned with my ability to consume enough fiber on such a restrictive diet. I am already on a lactose-free, low carbohydrate diet and am allergic to berries and shell fish. Yet another dietary restriction seems ridiculous. On the other hand, I have been suffering with pain for thirty seven years and would be willing to try almost anything. I suppose I will give the diet a shot, but not until I return from a trip I will be taking mid-April.
    Thanks again.

    Posted by plaingram2 | April 2, 2012, 5:35 am
  5. The diet worked for me. I was diagnosed with vulvodynia and in an extreme amount of pain for over a year. I did the 24-hour urinary oxalate testing. I bought the calcium citrate pills and within about a month the pain lessened greatly the diet helped me so much I was able to go on with my life. I have been virtually pain free for 15 years now.

    Posted by Donice | April 29, 2012, 10:33 pm
    • where do you buy the urinary oxalate testing? thats question one and also where can i get the calcium citrate pills and how many a day do i take. how do the calcium citrate pills help this problem please let me knw and how many a day during a day do i take thank you for this information this will help me alot

      Posted by lucy | May 19, 2012, 10:32 am
      • PLease re-read the post. There is no evidence to say urinary oxalate testing or following a low oxalate diet has any benefits in vulvodynia.

        Posted by Dr. Jen Gunter | May 21, 2012, 7:34 am
    • Good morning, I have been dealing with vulvodynia for many years but it got worse when I started menopause I an using a compound that the Dr. gave me it helps sometimes and other times it does not. Do you think I should try this diet? I also have IC which is a baldder condition.

      Posted by Tammy | December 13, 2012, 6:05 am
  6. I have been suffering from unprovoked Vulvodynia for almost 2yrs now. I have tried just about everything the oxalate diet,botox,antidepressant,physical therapy,cutting out all sugars, and nothing has worked..im soooo depressed!

    Posted by Donise | May 7, 2012, 12:13 am
  7. I have been on a low oxalate diet for nearly 20 for vulvar pain. In addition, I take timed calcium tablets, N-Acetyl Glucosamine and a fatty acid compound and I am pain free. For real information about the effectiveness of this therapy and a full list of allowable foods, google the Vulvar Pain Foundation. The list of foods has grown and the diet is not that restrictive.

    Posted by Helen Koehler | June 14, 2012, 7:18 am
  8. I have been suffering from localized provoked vulvodynia for almost 3 years and have finally been referred to a very reputable vulvovaginal specialist in my area. I have gone through all topical therapies as well as anti-depressants/seizure medications and nothing has even eased the pain. She has recently suggested the low oxalate diet, but I am extremely hesitant because it is so restrictive and cuts out a lot of the foods I depend on. I am lactose intolerant (so I depend heavily on soy products) with a moderate case of Irritable Bowel AND bladder/urinary tract symptoms.I am nervous to shake up my diet and add more stress on my body when my body rejects everything, as I feel sure it will. My doc says i am a great candidate for surgery since my case is localized and I am still so young (23). That is sounding way better at this point than a lifetime of this diet! I have just started a round of trigger point steroid injections so finger crossed they help!

    Posted by Fingers Crossed | July 14, 2012, 5:44 pm
    • sweetheart, 23 is also a really young age to go through surgery. what if it doesn’t work??? exhaust ALL non – invasive methods first before you take this step, i implore you.

      Posted by keryn | October 12, 2012, 8:31 pm
      • Since July I have explored trigger point injections, physical therapy, and I’ve also been taken off birth control to see if that could help. None of this has worked. I would never rush into something as invasive as surgery without exploring all other options first. While 23 is very young, this “disease” hasn’t spared me based on my age and I should not have to wait around for it to kindly subside based on that factor.

        If surgery does not work, I will push further into physical therapy, which, just so everyone knows, adds up to the same price as surgery after HALF the recommended 8-10 sessions with so/so insurance coverage. Based on my specific case, there is a greater chance surgery will work better than physical therapy, and I would rather spend my money on something that might actually fix my problem, invasive as it may be.

        Posted by FINGERS CROSSED | October 15, 2012, 7:33 am
    • Good morning, where is the Dr. giving you injections? I have vulvodynia for many years now I am using a compound my Dr. gave me it has Lidocaine, Neurontin, keto in it. I really need help. He is a good Dr. but my problem is not getting better.

      Thank you

      Posted by Tammy | December 13, 2012, 6:15 am
    • Hey, I know this post is from two years ago but I am 25 years old and have suffered from painful intercourse for the last four years. No one seems to know what’s wrong with me and I’ve have myself looked at by so many doctors and I’ve gotten no where. One told me to try taking a xanax before sex. The pain is only induced by penetration (not including tampons, interesting enough. Maybe because they are so small). The pain is a combination of a tearing-like feeling after so long and a burning feeling. It’s all preceeded by extreme tightness upon entry like my body won’t permit penetration. I have to gently coax things to relax down there. Is this what you’re experiencing at 24? What surgery was recommended?

      Posted by ShellofaGirl | March 19, 2014, 9:46 am
  9. Here’s the thing, women with vulvodynia are simply not getting the support and recognition we need from our care prividers. We are suffering and really tired of being brushed off… pardon us for trying anything that we can that may, even if its only a chance, help.

    Posted by Tawny | October 8, 2012, 9:04 pm
    • i completely agree with tawny. the reason one story is able to get so much momentum is that there is next to nothing being done on this topic with respect to research, viable treatment, recognition, etc. it took me five years, countless doctor’s visits, and my own internet research before i could even get a biopsy and proper diagnosis. i’ve been dealing with this disease for almost fourteen years now and i’m tired. i want it gone. i also want my doctors to stop patronizing me and telling me how manageable it is when they obviously have no personal experience to base that opinion on.

      Posted by keryn | October 12, 2012, 8:35 pm
      • I agree with Tawny and Keryn. I also have been dealing with this for so many years I can’t even remember. When I got older it got worse I really need help.

        Posted by Tammy | December 13, 2012, 6:16 am
  10. Thank God I found this website. I thought that I was a nut with this pain that had no name. Right now it is hurting me very badly. Sometimes it lets up a little and I can urinate fully but then it comes back. Sometimes I found that rubbing the area helps. I had to go to see an urologist and when he put these tubes in I litterally screamed with the pain. Why? Now I have to go for my yearly gyn. checkup and I am dreading it because I don’t know she will get the scapula in me without a lot of pain. Usually pressure on the pain sometimes helps. I used to work for ob.gyn. doctors a long time ago and I recall never reading anything in the files about this condition. The pressure the urologist used just hurt me a lot. I hate the thumping.

    Posted by Barbara Mangan | January 26, 2013, 1:14 am
  11. i suffered severe vulvodynia/vulvar vestitbulitis for 18 months until discovering the oxalate connection. my urinary oxalates were indeed very high (i insisted on having the test even though my urologist thought i was crazy, but turns out i was right!) and as soon as i went NO oxalate, the symptoms went away 100% … i don’t consider myself cured because i still can’t eat oxalates, but i find that as time passes, my body is getting more “permissive” and tolerant of oxalates in low quantity (cukes, onions) and so am improving. LOW oxalate did not yield results, but 4 weeks of NO oxalates left me COMPLETELY pain free. i now know what i have to do … hope this helps someone … listen to your own body, but slow down enough to do it … medications and surgery will always be my last resort … <3

    Posted by chickypea | March 25, 2013, 4:24 pm
    • What is in an oxalate diet?

      Posted by Barb | April 3, 2013, 11:08 pm
    • What do you eat on a no oxalate diet? Just meat and dairy? I have been on the low oxalate diet for 3 months and noticed very little improvement. I honestly wasn’t sure if I had felt improvement at all but over the holiday I had just a couple bites of something high oxalate and I have been burning like crazy and have been so much worse ever since. I’m thinking about trying NO oxalate, but just don’t know what I would eat. But I have suffered with this pain for 12 years, I am willing to try anything.

      Posted by corinne | April 4, 2013, 7:29 pm
  12. oh, and i also had/have kidney stones. … HONKING kidney stones. these problems (urine full of oxalates, kidney stones made of oxalates and vulva reacting to oxalates in urine) all happened at the same time. that’s how i put it together … but i had to go 100% oxalate free for 4 weeks to get my excellent results. i would love to hear from the women above who’ve had longer success with low-oxalate diet if they still have to follow it as strictly or if their bodies healed in time? i’m so glad that patients have each other …. if we had to wait until the medical community got a clue, we’d be in an even bigger mess than we are now. BIG LOVE to those who share their experiences and history! we’re all in this together!

    Posted by chickypea | March 25, 2013, 4:29 pm
  13. Are chia seeds and acacia fiber low oxalate? How about magnesium oxcide? Any reply will be very appreciated. I have Interstitial Cystitis and am in severe pain. I am about to start the no or low oxate diet. Nancy

    Posted by Nancy Rock | April 6, 2013, 9:18 pm

Trackbacks/Pingbacks

  1. Pingback: Vulvodynia is not associated with oral contraceptives: new study | Dr. Jen Gunter - August 15, 2013

Recent Tweets

Follow

Get every new post delivered to your Inbox.

Join 1,885 other followers

%d bloggers like this: