Saturday, September 28, 2013

my experience with interstitial cystitis

interstitial cystitis - i've mentioned it here a few times but never bothered to really explain it. truth is, i still don't understand it, nor do i believe i "have it". urologists admittedly have no firm grasp on it, either, which brings me back to 2008, when my life was hell and i was peeing fire.

experience incessant pain in my you-know-what. seek medical attention. test negative for urinary tract infection. take doctor prescribed combination pain killer/antibiotic anyway. end up with yeast infection from the antibiotic. curse living. go back to the doctor for more meds.

and so the torture went. i saw a handful of doctors over the course of a few months and even went to the emergency room because the burning was so awful. they all gave me something that helped the pain temporarily (and turned my pee bright orange), but none seemed willing to help me heal.

then i got my first big piece of the puzzle. my regular gyno was out of the office so i (reluctantly) saw the nurse midwife instead. i'm so glad i did, because she was the only one to give me some information instead of a prescription. she asked me questions, listened attentively, and said my symptoms sound like interstitial cystitis. she then urged me to heal myself by changing my diet.

haaaa-lelujah! this was the start of my natural healing journey (which then sparked my animal-friendly eating). after cutting out the acidic items found on the problematic foods list, my inflammation began to heal, and soon my symptoms were completely gone!

since i felt cured, i went off my diet. but then some time in 2011, the symptoms came back. not wanting to see another doctor or medicate with pharmacy drugs, i found a urinary tract support tea with cornsilk, couchgrass, uva ursi, and rosehips that helped the pain. then i read about plantain tea and to my amazement, found plantain growing all over my yard!

with herbal teas and loosely avoiding "problematic foods", i was able to stay relatively pain-free, only needing plantain tea about once or twice a month for minor discomfort - the burnsies, i call it. then in february of 2013, i experienced the worst flare-up i'd had in years.

my diet leading up to the flare-up wasn't the best and i knew it. with the holidays and cold winter months, i was eating pretty much anything and everything. my lax eating was reeking havoc on my digestive system, and there were times my bloated belly looked five months pregnant.

enter a slew of information and a radical diet transformation. this is where it gets interesting. something told me to look into oxalates. the term kept popping up everywhere. apparently they are found heavily in spinach, quinoa, almonds and kiwi, foods that i was consuming almost daily.

calcium oxalate crystals in urine

oxalates are naturally-occuring molecules found in many plants and animals that are indigestible to humans. in a healthy gut, they should stay in the g.i. tract and pass through to the stool. but under certain conditions, they can link up with calcium and crystallize. the crystals can be quite irritating and painful to tissues where they cause or increase inflammation. some have even described them as tiny shards of glass. (see picture above).

sources say a lack of calcium and magnesium can cause oxalate issues (weird because they say oxalates link up with calcium to form the crystals. see, it's confusing). our water is filtered of everything, including those beneficial minerals, and it's always been on my mental list of things to do to find a mineral supplement. i now supplement, but i could probably do better with that. 

a leaky gut can also cause oxalate problems. with the way my stomach was feeling, i knew something wasn't right with my digestive system. so i put myself on a "clean", low-oxalate diet free of processed foods, gluten and high oxalate greens, nuts, grains, and fruit. i was also mindful to chew my food thoroughly, because digestion starts in the mouth.

for a month pretty much all i ate was red lentils, avocado, white rice, mushrooms, peas, pumpkin seeds and nutritional yeast. i also supplemented with raw enzymes and probiotics, magnesium, calcium and herbal teas: marshmallow, uva ursi, plantain, and juniper berry*. the urinary symptoms quickly subsided though i felt discomfort in my lower back. oxalate build-up is what usually causes kidney stones, so i may have been passing mini stones. it could also have had something to do with the muscles, as i remember feeling like i pulled something doing some yoga stretches.

some people wanted to know why i didn't just go to the doctor?! once i got the pain under control, i didn't feel as though i needed to seek medical attention. i watched for the signs of infection and trusted in the sources that were helping me to heal naturally. my chiropractor assured me that the body knows what to do to heal. with my experience going to doctors for tests back in 2008, i didn't feel they would help me much anyway, though i am looking for a naturopathic doctor in the area to assess where i am now, feeling pretty good but experiencing minor irritation here and there.

my mom would tell me she thought i was eating too many greens. too many greens?! impossible, i'd say! turns out she was right. mother's intuition. eat with awareness. everything in moderation.

though i still eat greens (moderately), i no longer consume spinach, as its oxalate content is through the roof. what's interesting is spinach always left a weird feeling in my mouth and it would never grow in our garden. signs not to eat it! and though i once used to love quinoa (also high in oxalates), the flavor started to taste different to me.

i'm not saying spinach or quinoa is bad for you! there are many nutritional benefits to both, and your body may be fine with processing oxalates. i'm sharing this because it was reading all sorts of health testimonials that led me to some answers for myself on my own healing journey.

if you would like to try a low oxalate diet to see if it helps your cystitis symptoms, the most extensive oxalate list can be found within the trying low oxalates yahoo group. warning: when you join the group, you will get every email correspondence between the members. there is a way to stop it, but i couldn't figure it out. but i'm also still in the 90's when it comes to computer skills.

*please use herbal teas with caution. pregnant women are advised not to use uva ursi, plantain or juniper berry, as well as other teas, so check with a trusted source before trying them.


  1. WOW, Kelli....what an ordeal!! I love how you hit it head on with diet and were so in tune with your little warning signs to avoid the spinach and quiona. I remember awhile back reading a raw foodists post about how awful spinach is and not to eat it, especially raw; I have since removed it from our greens smoothie rotation. At the time I thought it sounded crazy but I too cannot eat it due to the strange tooth feel!!!
    Hope you continue to heal and find the foods that work beautifully with your body.
    Peace & Raw Health,

    1. thanks elizabeth! tweaking my diet was the only thing i knew to do. learning i could help myself by making different choices made me feel like an empowered woman with a minor issue to deal with instead of a helpless victim with a debilitating disease. thank god for all the information that came to me, and still does. if you ask for it - it will come.=)

      yes, that tooth feel is so weird! john gets it too. he won't eat spinach anymore either. i've read more about how oxalates can affect autism, thyroid problems, fibromyalgia and more, and now i'd like to know who was funding that spinach-pushing sailorman!

      thank you for all of your support, elizabeth. it means so much. xoxoxo

  2. kelli, visited your blog after ages and found this post, thank you so much!! i've been reading and intuitively feeling i need to cut down my greens, specially the high oxalate ones and your post just confirms it for me....going to start right away!!!
    your health journey is very inspiring, how wonderful that you have healed yourself by being in tune with your body and its needs...thank you so much for sharing this :-)
    much love and hugsssssss

    1. hi neeta! i'm glad you saw it, i remember you asking for more information. it's been a challenge to cut back on greens, especially since they are in season here, but i feel that when they are local and organic, it's ok to have them once a day. spinach i still say no to, even when the csa was giving away extra bags. thank you for your kind words and never-ending support! xoxoxoxoxo

  3. Such an interesting post... I do not suffer from interstitial cystitis (knock on wood) but I absolutely think that certain foods are not good for certain people.

    I can't eat almonds either (or any nuts really), too many lentils, cheese, milk, or eggplant. And the instant I do I absolutely feel unwell. Avoiding certain things have really helped my eczema and overall health.

    Glad that you've found a remedy for your pain!

    1. thank you ameena!

      my chiropractor was saying something like perhaps our ancestors didn't eat some foods we eat today, so our bodies aren't equipped with the enzymes to digest them properly. cheese...that's a never-ending struggle for me. it makes me mucousy and when i'm trying to eat vegetarian out, it seems the non-meat options always have cheese. but john and i just found a pizzeria last night that makes an amazing tomato pie.

      i'm glad you've found what to avoid to help your health!


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