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Bladder Instillations Help! (Re-Post)

This is a re-post. My blog has been getting lots of traffic on the topic of interstitial cystitis lately. So, I thought I’d republish a couple of articles.

Over the weekend I did a bladder instillation. As I mentioned in yesterday’s post, it really helped.

Clearly I am having an interstitial cystitis (IC) flare because I just did another bladder instillation. It is very unusual for me to do bladder instillations so close together. The instant relief it provides is beyond amazing.
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I am very grateful to have a doctor who knows IC and is experienced at treating it. After 12 years undiagnosed and 3 doctors prior to the one who finally diagnosed my interstitial cystitis, I know it can be very difficult to get a proper diagnosis (even amidst classic symptoms and even when the person, like me, has a commonly co-existing condition to interstitial cystitis… endometriosis).

I am fully aware that in some geographical areas doctors with the expertise mine has simply don’t exist… and I feel badly for those who do not live near health care professionals equipped to diagnose and treat interstitial cystitis. For me, a qualified doctor is within an hour’s drive. Not everyone is this fortunate. I fail to understand why there isn’t better training in medical school about IC so that urologists would be better equipped to diagnose and treat it. The three doctors who told me I didn’t have IC were all urologists. The doctor who finally diagnosed my IC is a pelvic pain specialist who regularly sees in his practice many women who have IC, endometriosis, fibromyalgia, vulvodynia, etc. In other words, he sees patients who have all of the conditions I just mentioned and I have all of them (and then some).

If you have IC or suspect you do, I would encourage you to research to find a doctor closest to where you live who understands interstitial cystitis and takes it seriously.

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For more information about interstitial cystitis, please contact the Interstitial Cystitis Association.

Right now, I am grateful that the very sudden IC pain I just experienced is much better simply by doing a bladder instillation.

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Bladder Instillations Help! (Re-Post)

4 comments

1 Jannie FunsterNo Gravatar { 01.15.10 at 9:47 pm }

I checked out the link to the association. Luckily I do not think I have IC. I do pee quite a lot, especially now I’m swilling all this green tea, but I have no pain, or infections.

I’m lucky I guess.

And so nice to meet you.
.-= Jannie Funster´s last blog ..A Beautiful Jumble =-.

2 JeanneNo Gravatar { 01.16.10 at 1:08 am }

Jannie,

Yes, the ICA is a very helpful organization. I’m glad you don’t think you have IC. Yes, silly Jannie, you may have urinary frequency induced by, what did you call it (?), swilling too many beverages.

Trust me when I tell you that the urinary frequency and urgency that I began experiencing in 1992 was such that it could not be confused with excess “swilling” of green tea.

Luckily for me, I finally got properly diagnosed with interstitial cystitis after 12 years of experiencing symptoms and after seeing a 4th doctor. Clearly, I would have been a whole lot luckier if it hadn’t taken 12 years! I say “luckily” because IC is, sadly, one of those infamous illnesses that does not typically get diagnosed promptly. So, I know there are many people out there suffering with it, as I did, without a proper diagnosis. There are also geographic areas that simply don’t have sufficient numbers of doctors (or any) who are trained to be able to properly diagnose IC and treat IC patients. I’m glad you have no pain.

All kidding aside…

Important note:

“Interstitial cystitis” and “cystitis” are NOT interchangeable terms. Urinary tract infections are sometimes referred to as “cystitis”. Urinary tract infections are completely different from interstitial cystitis.

You referenced “infections”. Sadly, many patients are misdiagnosed with UTIs for years before being properly diagnosed with interstitial cystitis. Long before I was diagnosed with IC, my symptoms were chalked up by some doctors (wrongly) to having had UTIs. These doctors didn’t bother doing a culture to verify that there was, in fact, an infection causing my severe symptoms. They were quick to prescribe antibiotics to me, though.

The thing is I DID NOT HAVE THE UTIs they were trying to prescribe antibiotics for.

Needless to say, giving antibiotics used for UTIs to a patient who doesn’t actually HAVE a UTI does not help the patient’s symptoms! Worse than that, overuse of antibiotics/mis-prescribing antibiotics CAUSES problems for patients.

So, it’s important for people to understand that “interstitial cystitis” is a chronic condition. Urinary tract infections (“cystitis”) are acute. IC can have flare-ups (like what I am having today) that can be confused with UTIs (which are acute infections).

It’s easy to see why the average person generally doesn’t distinguish between “cystitis” and “interstitial cystitis”. The similarity in names and symptoms explains the confusion.

The thing that kills me is that there are so many healthcare professionals who do not distinguish between urinary tract infections and interstitial cystitis. I believe medical schools have room for improvement in this area!

The three urologists who told me I did not have IC, prior to my proper diagnosis, had various theories for my symptoms. I was put on everything from overactive bladder prescriptions (no help at all!) to hormones that were supposedly going to improve my symptoms (made symptoms much worse)!

I am grateful that my pelvic pain specialist finally diagnosed me with IC after 12 years of pain and even sleep deprivation (yes, urinary urgency during my most severe flare-ups prior to treatment had me sleeping in chunks of about 15 minutes at a shot throughout the night because as soon as I’d finally fall asleep, the bladder pain would jolt me back awake). It was AWFUL!!!

So, I may have occasional flare-ups… like today. However, I cannot complain! I know from experience it can be much, much worse without diagnosis and treatment!

Last but not least, Jannie, honey… I don’t know how to ask you this but… are you having any memory problems? Here is why I ask…

You left this comment:

“And so nice to meet you”.

When? Today??

This makes it sounds like we just “met”. No?

You do recall “meeting” me before, right? Was that statement just a re-emphasis of your fond, warm/fuzzy feelings of peace and love? (To which I say “ditto”!)

Were you just re-iterating how happy you are that we “met” many moons ago? If so, I am equally happy to have met you… Funny Jannie!! 😉

Jeanne

xo

3 Jannie FunsterNo Gravatar { 01.18.10 at 11:52 am }

Ahhhhh, thank you!

There was this guy who came into our shop everyday and said “nice to meet you.”

Silly me.

Glad you got diagnosed after 12 years, you little Sweetie.
.-= Jannie Funster´s last blog ..Am I The Only One…? =-.

4 JeanneNo Gravatar { 01.18.10 at 4:58 pm }

Jannie,

Hmmmmm. Have you been hanging out and swilling beet juice with your virtual blogging assistant, Blue Bunny? Was it fermented… by chance? How about butter beer? Did Blue Bunny apparate to Hogsmeade and get some? (Man, I can’t wait for you to read the Harry Potter books)! Were you swilling that? Were you drinking to excess, perhaps?

We “met” quite awhile ago. Granted, we haven’t met (in person) yet. However, I’m not sure I follow the logic of the man who came to your shop every day and said, “nice to meet you”. Did he not remember having been there the day before and the day before??

Yes, you are silly. That much is for sure. 😉 That’s one of many reasons why we love you, Jannie. You make people smile and laugh! That makes your role an important one indeed.

Also, I am grateful to have finally found a doctor who diagnosed me properly. The improvement of symptoms thanks to obtaining IC treatment is dramatic.

Jeanne
xo

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