It took four months but! My theory was right


A padded elfin enby
Est. Contributor
  1. Diaper Lover
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  3. Incontinent
Today I went into the urogynecologist's office with the full intent on firing the man. There was brief confusion — the nephrologist referred me back to him, which confused him because he doesn't do kidneys — but between the other questions I was able to once again explain what my body is doing.

I think he finally got it when I explained my pain radiates UP.

Then I repeated the whole thing.

And I heard something I wasn't expecting:

"I know what this is!"

And I walk out today with a diagnosis of interstitial cystitis.

Now we can treat it. :)
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It's amazing what doctors can do... if they would simply listen! I'm glad you're getting answers.
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I’m glad that the doctors listened and that you got a diagnosis to treat. It’s good to put a name to something.
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I'm glad you finally got a diagnosis. It's not a very nice diagnosis to get, but at least you can start working to treat it once you know what you're dealing with.
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Welcome to the IC club.

My bladder pain got a little better with avoiding caffeine and orange juices. It got much better with avoiding food high in histamines:

Clinical studies have demonstrated that patients with PBS/IC have elevated levels of mast cells in the bladder. Mast cells are a type of immune cell that secret histamine. Furthermore, patients with PBS/IC have elevated levels of methyl-histamine in their urine. Methyl-histamine is a major metabolite of histamine.

Histamine contributes to all symptoms of PBS/IC being inflammation, pain, urinary urgency and frequency.

In PBS/IC the immune system responds to the bladder irritant by stimulating the release of histamine. However, with general bladder irritation (urgency, frequency, incomplete voiding), histamine that is building up from other sources (see below) is adding to the overall load of histamine in the body, and for some people this excessive histamine will irritate the bladder.“
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"If only doctors would listen", yes!

I went to the clinic to be tested for diabetes in my 40s because I knew that my insatiable thirst was not normal (I would crave grapefruit juice). Nobody craves grapefruit juice like I was. So after a few months, I finally decided to get checked.

The doctor looked at me and said "you're wasting my time". "You're not overweight and in mid 40s yadda..". When he started to review the results on his monitor, he apologized. He apologized three times before I left that appointment because yes indeed, I had extremely elevated glucose levels, indicating diabetes type-2! If I had continued undiagnosed, I could have caused severe organ damage to kidneys or eyes.

Yes doctors - we do sometimes know when something is not right with our bodies. So listen up. Unfortunately, in fairness to them, they get jaded by all the folks that bug them about every little thing. So this is the reality that we have to work with.

Bottom line:
push them like the OP to get the correct answer. You are your own best ombudsman.
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