Pam yes I agree with everything you say. Thankfully there are a few docs that see this as a GUT DISEASE That it is. Here is Dr. Chris Decker on IC (IF I were you I would get under her care, or Dr. Brizman’s. We should find a way to connect so we can discuss more):
Interstitial cystitis and vulvodynia both wreak great misery, which is too bad, because they’re both eminently treatable once one understands what causes them. Anybody who’s ever suffered from either of these things probably doesn’t need them defined, but just so we’re all on the same page, “interstitial” means between cells (of the bladder in this case) and “cystitis” means bladder inflammation. “Dynia” is a suffix meaning pain.
To understand how interstitial cystitis and vulvodynia start, we have to look at the gut.
The thing that gives rise to interstitial cystitis and vulvodynia is the same thing that causes so many other ills, namely, a dysbiotic, inflamed gut. This is so because because the ultimate result of such a scenario is a sieve-like intestinal wall–a leaky gut–through which toxins can pass into the bloodstream, where some of them must eventually be filtered by the kidneys. From there, toxins reaching the bladder cause inflammation, the condition known as interstitial cystitis. There are many things that can throw our gut flora out of balance, including antibiotics, oral contraceptives (which decimate gut flora), processed foods (which feed abnormal gut flora), various toxic exposures from food and environment, radiation, excessive alcohol consumption, food sensitivities (such as to gluten. casein, or anything else), and, certainly, a carbohydrate-heavy diet (especially when insulin resistance or any other kind of dysglycemia is the result).
Abnormal microbes in the gut mean abnormal microbes elsewhere, including the vagina, urethra, bladder, and groin in general. The vagina, urethra, and bladder normally are populated mainly by Lactobacilli, particularly L. crispatus and L. jensenii. These bacteria produce hydrogen peroxide, which, because it lowers the local pH, prevents potentially pathogenic bacteria from adhering to the mucosal walls. Without the protection of these Lactobacillus species, bacterial infection can ensue much more easily.
But interstitial cystitis is not an infection. It’s an inflammation. When normal flora are present, they produce sulphated glycosaminoglycans, or GAGs, which provide a viscous, mucous coat to the inner wall of the bladder, protecting it from harm. Naturopathic supplements that are used to treat the symptoms of interstitial cystitis almost always contain something to help restore the normal GAG layer, substances like n-acetyl glucosamine (NAG) or glucosamine HCl. Such medicines often also contain herbal demulcents like corn silk, which coat and soothe the bladder lining. Pre-formed vitamin A is always a useful healing agent anytime epithelial tissue pathology is involved, as it is here. Because urine nitric oxide synthase is decreased in interstitial cystitis, with consequently decreased urine nitric oxide levels, L-arginine, a precursor in nitric oxide synthesis, is often beneficial.
While these strategies typically quickly relieve symptoms and bring welcome relief from pain, of course we must also look to the deeper level of treating the true cause of the symptoms, namely, the dysbiotic gut. In my practice I use a paleo/primal/GAPS approach, which I find very effective. It’s important to identify and eliminate food sensitivities–not allergies, but sensitivities–that we may be completely unaware exist. It’s important to use foods that will heal and seal the gut wall, and to eat in ways to which we are genetically adapted. And, especially with everything else in place, homeopathy can be dramatically effective at relieving the symptoms of interstitial cystitis and vulvodynia. I’ve seen the most distressing chronic pain turn off almost like a light switch, usually at least within a few days, sometimes within hours.
So, to conclude, if you or someone you know is dealing with interstitial cystitis or vulvodynia, please pass the word and know that this lousy, miserable condition does indeed have effective treatment and that it’s very much within reach.