Things I haven't tried so far (Laura)

Following my earlier post listing everything I've tried in order to heal, I am aware that while this is a very long list (!), it doesn't cover everything out there. I think the more you explore, the more you find to potentially try, which is a great thing and this has taken me on an inspiring journey along the way. However, there are some more obvious things for v pain which are distinctly missing from my earlier list and I'll explain below why they are not on there:

Low Oxalate Diet

This is a diet that eliminates, or vastly reduces, oxalates in the diet, with the thought that when we eliminate said oxalates through urination, they irritate the vulva area. I read a whole book on this then decided that it didn't resonate with me. I don't have pain on urination and most of the foods it tells you to eliminate are healthy foods and I didn't want to compromise the rest of my health.

Botox Injections to Numb the Nerves in the Area

I wondered about this but:

a) it only lasts a few months before you need the injections again

b) it is a cover up, not getting to the route of the problem 

c) I discussed it with my physio who was highly alarmed! She said it totally contradicted what she was doing with me and that I cannot work with the muscles to heal if I am consciously numbing them at the same time! Fair point 

Surgery to Remove the Painful Area(s)

Gulp.

Again, this will often be carried out without knowing what caused the pain in the first place, meaning that the cause could still be there.

I have read mixed reports on success rates but it looks to be in the region of ~20% chance of improvement (and even lower chance of a complete cure) and ~50% chance that it will get worse. Not great at all.

I did ask my gynaecologist about this years ago and he immediately advised against it as it is very disfiguring and doesn't have good success rates.

 

I'd be interested to know if any of you have had any success (or disappointments) with any of these treatments. If so, get in touch!

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 itHuman 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. 

 

 

 

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: 

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