Does Diet Heal V Pain?

I got this post in my inbox today and it got me thinking...

Does what we eat affect v pain?

There are so many anecdotal stories out there, many like this one backed up by very convincing scientific explanations. (In case you didn't read the above post - she stopped eating dairy and her menstrual cramps stopped.)

Step into the world of research and opinions on health and diet, however, and you are blasted with a million different and often conflicting prescriptions, all of which guarantee you amazing results if only you  _________.

Early on in my journey, I was told that the "low-oxalate" diet would help improve my vulvar pain. The theory was that something called "oxalates" was irritating my skin via urine, so I should stop eating those foods (which included spinach, red wine, chocolate and much more.) 

So I tried it. It didn't do a damn thing.

I wasn't surprised. My pain seemed to be coming from a deeper place, to be different than skin irritation, and I was skeptical that this crazy pain came from peeing. Rinsing with water after urinating didn't help, so why would a low-oxalate diet?

As far as I know the whole low-oxalate diet for V pain has been discredited, but over the past few years public awareness about the relationship between food and health problems has skyrocketed. This has generally taken place in the form of "this specific food causes this specific symptom," rather than "eat a healthy balanced diet." So we have an avalanche of dairy-free, soy-free, gluten-free products filling our grocery shelves and making their way onto restaurant menus.

Back in the day doctors thought my grandfather was dying from stomach cancer. He was wasting away. Turns out he had celiac disease, a condition in which proteins found in grains (gluten) destroy the lining of the intestine, making it impossible for the body to absorb nutrients. Once he eliminated gluten he recovered completely and went on the live another 25 years.

In this regard, I am grateful for the new awareness about food-related chronic disease, and hope the gluten-free craze helps people with celiac get a proper diagnosis.

But amidst this "elimination diet" frenzy there is so much conflicting information. Vegans, vegetarians, followers of the paleo diet, Weston-Price, Dr Andrew Weill's food pyramid, raw food, juicing - all of them proclaim that by simply adding or eliminating X, Y, and Z we will be amazed at the incredible health benefits.

For some people, it works.

But as someone who has gone down just about every dietary pathway, I have also found this hype to be discouraging.

Before I developed v pain, I already had a number of health struggles, and in a search to feel better I eliminated three things: dairy (it gave me headaches,) soy (it gave me diarrhea,) and gluten (felt better overall.) This was 13 years ago, so people thought I was nuts. I was 19 years old, wasn't I supposed to be living off beer and pizza?

I had been a dedicated vegetarian in middle school and high school, but since I had eliminated dairy, soy, and most grains, I started eating meat again to add some variety to my diet. 

With the current elimination diet mania, I feel vindicated for my choices, but also bummed that while I did have some success with dietary modifications, it sure as hell didn't turn me into a picture of health. Post-elimination, I went on to develop all kinds of nasty things, including v pain.

A couple of years ago I decided to revisit the land of elimination diets. I had been resistant, as I knew that food restrictions could be annoying and not completely successful, but I figured that I owed it to myself to give it another try. In sequence, I took out one thing for a few weeks at a time, but I didn't see results. I figured perhaps I needed to chuck more than one item, so what the hell I might as well keep going and eliminate everything at once.

For three months I ate nothing but unprocessed organic pasture-raised meat, some fish, and non-nightshade organic vegetables - the only things that we (mostly) don't blame for health problems. (Regarding my choice of including meat: I had already been a vegetarian, they are not viewed as allergens, I ate only the healthiest meat possible, and I needed to eat something other than non-nightshade vegetables.) 

Everything else: nuts, fruit (because of the sugar,) grains of any kind, beans, legumes, nightshade vegetables, anything processed, went out the window.

It didn't do a damn thing. (I did lose ten pounds, but that was not the goal.)

It took an immense amount of effort and discipline, and at the end I was burned out and deeply disappointed. It did nothing for v pain, didn't help my menstrual cramps - so frequently blamed on dairy - and it didn't even make a dent in my acne-prone skin, and everybody who's anybody blames acne on inappropriate diet.

Following this experiment, I figured if diet didn't change any of my symptoms for any of my health problems, I wasn't going to stress out about eating healthy. Exhausted from months of intense cooking, I gave myself permission to subsist on cereal and yogurt for awhile (the pain meds I was taking at the time eliminated the dairy headaches I used to get.)

I spent a long time subsisting on cereal and yogurt.

Only recently have I started to get back into my old, pre-the-mother-of-all-elimination-diets-diet habit of eating generally "healthy." Ya know, organic meat a few times a week, gluten-free grains, organic vegetables, organic fruit, some beans, organic dairy, pasture-raised eggs. I'll have the occasional chocolate or bag of chips. 

It still hasn't done anything to change any of my symptoms, but I like to think that it is worthwhile self-care, and in my opinion healthy food tastes good. (Except when I burn it or otherwise mess up - I am not the best cook.)

I wish diet was the panacea for all of my many heath issues. Wouldn't that be great? A solution completely within my control, no doctors or second opinions or prescriptions needed!

As it stands, I have not yet reached the promised land.

There are many benefits of elimination diets - its DIY, it can be precisely tailored to your needs, and the proof is in the pudding. There is strong motivation to continue behavioral change when you reliably feel a positive difference.

I'm glad people share their stories of success with any treatment, especially simple lifestyle changes, as such sharing can genuinely help others. 

But I am turned off by the endless theories put forth to convince you that this way is THE way, and the fanaticism and judgment that sometimes goes along with it. Human bodies are so complex, and given the fact that there are currently 7 billion people on this planet it is difficult to believe that one way of eating will "fix" everyone.

My two cents? Experiment, be open-minded, and listen to your inner compass. Theories are not the holy grail. Ultimately, your body's reaction to any treatment is the most important information out there.

As for the theories and fanatics?

Take them with a grain of salt. 

Evidence-Based Medicine Part 2: Who Decides What Gets Studied?

In Part One of this post I discussed the general background controversy of evidence-based medicine (EBM,) and some examples of how that is playing out in the pelvic pain world.

In Part Two - that's this one! - I bring up a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three I'll break this mess down and discuss what it all means for you and the health of your lady parts.

* * *

The big ol' red flag: 

Who decides what gets studied?

Think about that...

It's complicated right? Someone has to get an idea, they have to convince other people it's a good idea, they then have to convince still more people to give them money to research this idea, and then after that study comes out, well, one study doesn't mean much, so lots of other people have to jump on the bandwagon and get money and research the same topic until there are hundreds of studies, most of which have the same result, at which point we have a body of evidence.

What could possibly be imperfect about this system? Some roadblocks:

(1) Problem Identification Bias: If someone is not aware of a problem, they cannot be expected to solve it. (This is why v-pain usually doesn't make it out of the gate.)

- You need demand to get supply.

(2) Idea Generation Bias: Good science comes from good scientists, who have been trained in western scientific methodology and know a lot about western science and western medicine. But they may not know anything about other healing traditions from beyond their cultural experience and training, thereby cutting them off from potential avenues for research. 

- Scientists aren't going to propose solutions based on something they don't know or understand.

Both the genesis of the question and the proposed solutions are inherently biased, therefore worthy problems and worthy solutions may never make it past this point. What happens to the ideas that do?

(3) Salesmanship Bias: To convince others to join them and give them money, scientists have to have clout, they have to be able to sell their ideas to other people. Just like anything else, there's gonna be horse-trading, office politics, personal and institutional agendas, competing financial priorities, personality differences, and a whole host of other human realities at play here. 

- The road to funding is paved with politics. 

(4) Funding Bias: Studies are expensive. The largest funder of medical research in the world is the National Institutes of Health (NIH,) which is funded by the US government. Pharmaceutical companies spend more than any other industry lobbying... the US government. How science gets funded is a post (actually, a library of books) in and of itself, but for now, you do the math.

- There are many agendas other than a patient's well-being that determine what studies get funded.

(5) Publication Bias: The study has to get published in a reputable medical journal. No one along the road to funding will greenlight a project that has little chance of publication, for whatever reason. 

- The road to publication is also paved with politics. 

The initial idea had to go through a lot of hoops in order to complete one study, but EBM requires many high quality studies.

(6) Repeat Studies Bias: Where's the professional acclaim and advancement for researchers, funders, or publishers to churn out endless studies looking at the same thing? No one gets credit for replicating a study for the 700th time, even though mundane grunt work is the foundation of solid evidence. 

- Ideas may not get the follow-through necessary to create a substantial body of evidence.

In short,

Equally good avenues for research may not get equally good support.

Even when a great idea makes it all the way past step (6), it still needs to be taught to doctors and translated into clinical practice before it can actually reach patients.

* * *

We as patients and medical providers need to discuss and understand the benefits and limitations of evidence-based medicine. It is not a panacea.

On the winding road outlined above, it is easy to see how problems and solutions worthy of research can get overlooked or left on the cutting room floor.

And yet people still have to make medical decisions regardless of whether or not research exists.

In Part 3, we'll discuss how to do just that.

Evidence-based Medicine Part 1: What the heck is this and why should I care?

"Evidence-based medicine" (EBM) is exactly what it sounds like: healthcare based on rigorous scientific evidence.

Call me crazy, but isn't that what we get any time we go to the doctor?

Turns out, no. The reality of clinical practice is more complicated than that, not everyone is on board with this concept, and due to the dearth of research on V pain, knowing about the pros and cons of EBM is very, very relevant to you.

* * *

Part One of this blog post discusses the general background controversy of EBM, and some examples of how that is playing out in the pelvic pain world.

In Part Two I'll bring up a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three I'll break this mess down and discuss what it all means for you and the health of your lady parts.

Ready, set, go!

* * *

Here's a little background on the controversy...

Supporters say that EBM improves care by reducing the use of unproven treatments, variations in clinical practice, and the failure to follow consistent guidelines; i.e., it corrects the problem of doctors doing way too many different things for patients facing the same issue, including the use of treatments that may have no evidence to back them. Don't patients deserve to get the best treatment available and not be yanked around on wild-goose chases of potential quackery?

Opponents say that doctors need to respect patient preferences, that just because something works statistically doesn't mean it will work for a particular individual, that insurers will use EBM to deny patients care because there isn't enough evidence to support it, and - this is where it matters most for you - for little researched conditions like V pain, there often isn't any evidence anyway.

Also and ironically, as of the writing of this admittedly old article (2004), there isn't any evidence that evidence-based medicine works. (I tried to find more recent studies investigating this question, but was unable to. Doesn't mean they aren't out there. A lot of scientific evidence isn't available to the public as it is published in super expensive journals which are only found in libraries with restricted access - i.e., university libraries that are only open to students.)

If you want more information on the brou-ha-ha surrounding EBM, you can find various articles here, here, here, and here. The Center for Evidence-Based Medicine can be found here.

* * *

How is this playing out in the world of V pain?

At the International Pelvic Pain Society's annual fall meeting this past October, the keynote speaker implored the audience to launch and participate in studies on pelvic pain. He said it was the responsibility of all health care professionals to do so; failure to participate was failing one's patients. For the record, the speaker was Dr. Khalid Khan, the editor-in-chief of the British Journal of Obstetrics and Gynecology. (You can like BJOG on Facebook and follow them on Twitter.)

At the same event, Dr Christopher Payne at VistaUrology said "Evidence-based medicine is holding us back." (Thanks to Sara Sauder, DPT, for taking good notes and actually having that quote.)

On the surface it looks like these two doctors are on opposing sides, but they aren't. Dr Payne's point was that patients can't wait for trials and studies to be done; they need care now. Dr Khan was frustrated at the slow pace these studies were coming out.

In this blog post, you can read Sara Sauder's take on the problem of producing and relying on EBM, and on Dr Jen Gunter's blog you can get a perspective from someone who is whole-hog pro-EBM to the exclusion of everything else.

* * *

My two cents as a V pain patient is that EBM is not the gold standard.  

As a patient, I'd rather try something untested than not try something at all. I'm bummed Sara doesn't contribute to research when it's exactly her knowledge and experience we need. I appreciate Dr Gunter's generous sharing of her knowledge - a lot of us don't know how to interpret studies and are misled by the media as to what they mean - but at the same time in at least one post through flippant generalization she wrote off a treatment that I and, anecdotally, many other women have benefited from.  The tagline for her blog is "I wield the lasso of truth," but I don't buy it. A more accurate, but less catchy, tagline would be "I provide education on how to interpret scientific evidence, and point out inconsistencies and misinterpretations of said evidence in the media." But "truth?" Eh.

* * *

So that's the very brief overview of EBM in general and in the world of V pain. But wait, there was something missing here...

Who decides what gets studied?

We'll be looking at that can of worms in Part 2. Stay tuned.

PS Remember to tweet and FB post about my scholarship application!

Happy Valentine's - I mean, Vagina's Day!

Tomorrow's Valentine's Day! And you know what that means - it's the most vulvovaginal day of the American year.

(If you know of a country or culture that has a more juicy V day than this, you know I need to hear about it.)

It's the time of hearts - believed to be a symbol descended from images of women with their legs spread wide, and using their fingers to pull the labia upward, turning the vulva into the heart shape we know and love today!

It's the time of year when stores and offices and homes are draped unabashedly in feminine red and pink, and rose sales skyrocket. It's the time for stupid articles about "What Women Really Want," hopeful yet unrealistic expectations, and many many bottles of wine drunken by hordes of both the depressed and proudly single.

But it ain't all about boxes of chocolate. It's probably the most popular time of year for productions of The Vagina Monologues. It's the high holiday for V-Day, the organization that fights violence against women and girls, the organization that birthed One Billion Rising. One Billion Rising puts on events in 200 countries in which women and men dance to protest the fact that one in three females will be raped or beaten in her lifetime.

And - with the notable exception of gay men - it is a time when millions of people have an extra excuse to relish the pleasure that the almighty V brings.

For better or for worse, Valentine's Day reflects the conflicted emotions, beliefs, and (mis)understanding that our nation has about women and their sexuality.

Yes, it's ostensibly about love between couples - but really, this one's about the ladies. Maybe that's because our national stereotype is that romance is inherently feminine.

And frankly, I'll take it. As a female I love to be associated with love, with romance, with pleasure. In fact, I want more of it. This planet could use a healthy dose of feel-good sumpin' sumpin' and I'm happy to supply it.

This vulva-shaped box of chocolate is for me? I thank you sincerely! I don't care how trite it is, I like vulvas and I like chocolate. Boom. A luscious bouquet of flowers in the middle of winter? Yes! That is perfect, as indeed my lady parts are springlike all year round.

I am happy to ignore the many ridiculous aspects of this day as I am too busy making it my own.

May you relish this Valentine's Day. May you celebrate the V however you damn well please: listening to symphonies, enjoying the company of your vibrator, dancing with the one billion, crying at romantic comedies, reading erotica, hugging a tree, getting swept off your feet by your favorite painting.

This is your day, and you and your vagina can do whatever the hell you want with it. 

Happy Valentine's Day, hot stuff!

Yes, Virginia, There is a Connection Between the Papacy and My Pelvis

Recently one of my Facebook friends kindly posted a link to an NBC article for one of her Facebook friends, a devout Catholic who is a big believer in home births and breastfeeding:

Feel Free To Breastfeed Here, Pope Tells Mothers in Sistine Chapel

The post got a number of likes, and four comments praising the Pope.

Not only did NBC pick up the story, but the New York Times carried a similar AP story,

Pope Baptizes 33 Babies in Sistine Chapel

that found this invitation to breastfeed so noteworthy that it mentioned the fact twice in a brief eight paragraph story.

I am happy to see progress of any kind, and glad to see Facebook comments supporting much-needed change.

But...

Another title could have been:

"Organization that Promotes High Birthrates has an Event for Babies, at the Event Babies are Allowed to Eat."

The fact that it is noteworthy a Pope has encouraged breast feeding highlights the entrenched misogyny and hypocrisy of one of the planet's most powerful organizations. Their 1.1 billion members make up 16% of the world's population and are found in substantial numbers on almost every continent. 

As I see it, this Pope, rather than being super awesome, is meeting minimum standards. Praise his actions if you wish, but in my opinion the cries of "Yes!" would be more effective if reframed as "Yes!...and..."

Apparently Catholic mothers are so accustomed to NOT being allowed to feed their babies when needed that they require assurance to proceed with this most mundane act. Did I mention that this event was held in one of the organization's most sacred spaces? A place that logically - given the importance of babies in this religion - should have a tradition of babies being fed without the bat of an eyelash?

Apparently that logic is not so. This incident made worldwide news because the leader has broken with 2,000 years of tradition. Two THOUSAND. Not only is this leader only barely meeting minimum requirements, the previous 265 men who held his post did not. 

Oh my lordy lord.

You may think that I am taking this rather personally, and if so, you are correct. I was raised in a conservative Catholic household and community that aligned itself completely with Church doctrine.

One of those doctrines is that of Papal infallibility: the Pope is always right no matter what. When I was little I was taught that should I ever disagree with any of the Church's teachings, I must pray to God for the grace to see that I was wrong. No thinking allowed!

Despite my parish's exhortations of "Don't hide your light under a basket," if someone's light consisted of exposing hypocrisy, misogyny, rascism, sexual abuse, homophobia, transphobia, people-who-belong-to-any-other-religion-other-than-Catholicism-pohbia, and all other manners of violence so counter-intuitively perpetuated in the name of God was, as you may expect, stuck under that basket more often than not.

When some people get angry they tense their jaws, their fists, their bellies. Over the last ten years I have come to realize that when I am angry - especially when I feel angry and powerless - I clench the bejeezus out of my pelvic floor, the most hidden part of my body, the place where I can hide this anger and therefore protect myself from repercussion the best.

I recently read (on a blog, I can't remember which one, tell me if you do) a pelvic pain patient comparing her musculature to that of a clenched fist, held for years on end. Of course, when that hand begins to relax, it will not be the same as before. It would be exhausted, weak, painful, tense.

And after 18 years of living in a Catholic household that is exactly what happened to my pelvic floor.

I don't blame the Catholic Church for my pain - I don't blame anyone or anything, as a matter of fact.

But I do acknowledge the fact that any and all illness is due to a dysfunctional relationship between our outsides (environment, stressors, etc) and insides (diet, physicality, emotions, etc.) So yes, I see a clear connection between my Catholic upbringing, the Papacy, and my pelvic pain. 

It's not only me. I have known other Catholic-raised women, some of whom continue to identify as Catholic on some level, who make the same connection: misogyny (or any violence) disguised as spirituality is a sickness. And, not to pick on Catholics, I'm guessing many women connect their pelvic pain to experiences or beliefs they have had, religious or otherwise.

* * *

I am not opposed to Christianity, or any other religion. My spirituality is dearly important to me, and I wish to respect the culture and structure of others' spirituality.

Yet it is incumbent on all of us to resist and speak against the violence that threads it's way through our religious institutions. They are not perfect, nor should they be. But like all people and organizations, religious establishments should be held to high standards, striving to continually evolve into better versions of themselves.

Religions carry an even heavier responsibility than other organizations because they purport to connect humans to divinity, The Meaning of Life, afterlife, our interconnection with everything on this planet and beyond. They are with us in joy, but also take a deep responsibility to be with us in dark times, offering us hope and healing. Their reach extends far beyond their adherents, molding broader society's ethics and values.

Introducing violence, hate, and exclusion into these places of intense vulnerability and importance magnifies that violence beyond the effect it would have had elsewhere. Should a religious institution break it's covenant to care for people, it must take the violation seriously and correct it. This should not take 2,000 years.

This planet and it's inhabitants deserve better.