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 3: How is this relevant to me?

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 we looked at a big ol' red flag that is not being discussed in the EBM controversy.

In Part Three - that's this one! - I break this mess down and discuss how it applies to you and the health of your lady parts.

* * *

What does all this discussion about the strengths and limitations of EBM  mean for you?

Rather than waiting for someone else to fix us, we have the opportunity to step up and be in charge of our care. Be a partner rather than a patient.

To start, you'll want health care providers who have experience working with your issue. They have a higher probability of following the research out there, and will have the most anecdotal evidence to guide their suggestions.

You can find some of these people through "Find a Provider" pages at the International Pelvic Pain Society, the National Vulvodynia Association, and the American Physical Therapy Association's Section on Women's Health.

If you can't find anyone in your area, you can always try contacting someone close by to see if they have any suggestions.

What if you don't have access to someone with this experience? 

Then you need to be proactive and find the doctor who is most willing to take the time to find what little research there is, and combine their knowledge of your situation with the information they get. You can find great tips on how to do this within the limitations of our convoluted and time-strapped medical system in the book "Healing Painful Sex: A Woman's Guide to Confronting, Diagnosing and Treating Sexual Pain," by Deborah Coady, MD and Nancy Fish, MSW, MPH. (Which you should totally have anyway - in my opinion it's one of the best and most comprehensive books out there for V pain.)

No matter what doctor you have, you will have to be willing to take risks and try new things, and be prepared for some of those things to not work. No need to despair if that's the case. Bring your new information back to the table and keep working on the puzzle.

Since your doctor is going to be more humble about the limits of their knowledge, they are more likely to be open to whatever feedback and research you provide. 

How do you find research? You can access it through the NVA. You can also participate in studies through the NVA, helping to create more research. (FYI they recently overhauled their site, so if you haven't been there in a while, check it out.)

Another way to incorporate EBM into your care is to research information from studies on related topics. For instance, Dr Dean Ornish has extensively researched the impact of lifestyle choices on chronic illness.

If you are interested in trying something that doesn't have evidence behind it, or that is outside the bounds of Western medicine, your doctor may be more willing to support you than a doctor who is used to relying on evidence alone. Your experiment stands to benefit not only you, but others as well; your doctor can add your experience to his or her anecdotal evidence.

* * *

A great example of someone who successfully healed with zero evidence of any kind is Sarah Kennedy.

Faced with painful sex but never getting an official diagnosis, she stumbled upon a technique called Orgasmic Meditation. Invented not for pelvic pain but to enhance one's sexuality, OM involves gentle repeated stroking of the clitoris, alone or from a partner. Boom. Regularly practicing OM healed her V pain and she is now a life coach who specializes in helping women experiencing painful sex and low libido. You can learn more about Sarah's story and her coaching practice here.

Even if you feel like you are running out of options on the EBM for V pain front, there is always something else out there. The world is a big place.

* * *

It's true that we don't have as much evidence to go on when it comes to treatment for V pain. That doesn't mean we can't benefit from EBM. More importantly,

The lack or existence of evidence on treatments for V pain is not the sole determinant of whether or not we get well.

These bodies are ours and no one else's.

And we are 100% capable of taking care of them.

Getting Your Providers to Communicate

Sara Sauder, DPT over at Blog About Pelvic Pain just wrote a great post on how to get your providers to communicate.

As a patient I appreciate her perspective as a health care provider. She is very honest about how hard it is to get doctors to talk with each other.

Seeing this helps me realize that the struggles I face as a patient are not unique to me, but are part and parcel of a system that unfortunately isn't often designed to care for patients.

Thank you Sara!

Support the Revolution! ChronicBabe 101 Book Coming Our Way

Hopefully you are already familiar with www.ChronicBabe.com, a website dedicated to helping young women with chronic illness build fabulous lives. I've re-posted and commented on some ChronicBabe posts in the past.

Founder Jenni Prokopy is putting together a book based on over ten years of running ChronicBabe, and she is using Kickstarter to fund it. Kickstarter is an "all-or-nothing" platform, so hop on over, even a buck will help: 

Donate to ChronicBabe Kickstarter Fund!

Like all Kickstarter projects, each donation level gets a 'reward,' a thank you for your contribution. Unlike other projects that require you to lay out big bucks to get a reward, Jenni's rewards start at yes, just a buck, so no excuse not to chip in!

Deadline is Friday March 27th, but you'll totally donate right now, right?

If you don't already get Jenni's weekly blog/vlog posts, sign up here.

 

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.