Is it a urinary tract infection or interstitial cystitis?

Wow, such a great thread with fantastic info. Thank you Weesa for getting this started and all your great info. Sandeeonherown, where do you buy grapefruit seed oil????? I think it would definitley compliment my cranberry extract that I take. I never want a kidney stone or UTI again if I can help it. Thanks again for all the great info. Kathy

Here is what I know based on my experience--a few important things to add and a different perspective from different docs.  IC is now reserved in a good portion of the medical community for a bladder condition with ulceration of the lining, called glomerulations.  A generalized pain disorder with no bacterial or other bladder disease present is part of what is often being called PBS, or painful bladder syndrome.  It is believed by many doctors to be a hypersensitivity issue, often triggered by an initial insult.  Vaginal atrophy and lack of estrogen can be that insult, so can a UTI.

The "IC diet" works for some, and not others.  Everyone is different in terms of what diet modifications are needed.  Generally, clean, moderate pH water like Evian is best.  Stress triggers some people, food others.  It usually goes in and out of remission.

Foul urine is not necessarily a sign of IC.  IC, or PBS is a very mysterious disease with sadly very little understood about it.  No one medication or intervention seems to help a majority of patients.  Some are on tricyclics, others opioids.

There is no definitive test, hydrodistention is considered by many docs to be an inaccurate diagnostic.  The potassium test is also up for a lot of debate.  Some doctors have called it "barbaric", as well as inaccurate.  Many non-IC patients have pinpoint bleeding on hydrodistention.  As some doctors consider the available tests inaccurate, it is diagnosed by symptom elimination (you can find this test online, though I forget what it is called--it has an acronym).

The good news is, it is not considered a degenerative disease in the PBS state.  Many doctors do not speak in terms of "mild" or "moderate" in this context, as it is not understood to be progressive. The concern in the medical community, as with many pain disorders, is that chronic pain is believed to cause changes in the dorsal horn, thus creating an endless pain cycle.

IC Network is wonderful, but it is important to understand one size does not fit all with this issue. It's important to work with a doctor who is willing to experiment with medications and support you with the latest research on this disease.

Weesa,it is my job, in some way, to make my experience educational for others!  I went through so much, and I still do.  But I am under control generally speaking.

Just wanted to clarify a bit further.  My doctors in NYC felt that only in ulcerative glomerulations could the diagnosis of IC be made. My specialists didn't do hydrodistention.  They did to cystoscopy to rule out cancers.  But their diagnosis was made more than 10 years ago, and I realize my doctor was actually on the cutting edge (if their is one in this game). She told me I had "hypersensitive bladder" spurred by a UTI.  Flash forward 10+ years, and that is known as PBS.

As many people have gloms on hydro, you do not need to feel like you have a bladder dysfunction per se (a mental state I believe leads to anxiety and worsens the condition). Many non-ICers have gloms on hydrodistention.  It can be as simple as lower bladder capacity, not necessarily a faulty lining (by the way, the concept of a faulty mucosa is also seriously up for debate, many docs no longer subscribe to this idea).

What you need is good pain management. I ended up at a wonderful pain clinic, and after years of experimentations and instillations,found some relief.

I'm nervous about a naturopath as I have kidney issues already from medications and don't want to exacerbate the with anything. What to do? What to do????

Barbe, my naturopath would take all my health issues into account, I trust her to work with medications that only fit with my profile.  She has done a beautiful job so far.