Endometriosis Blog: Follow-Up To Yesterday's Post On Interstitial Cystitis (LINK TO VIDEO)

I'm including an abbreviated disclaimer here since I will touch on methods of diagnosing IC (see full disclaimer at the top of the homepage). Please consult your health care provider(s) for questions on treatment options for your chronic illness. Anything posted by me, or anyone who comments on my blog, should NOT be construed as medical advice.

This is a follow-up to yesterday's post on interstitial cystitis. Yesterday's post referred to a PBS documentary on interstitial cystitis. I just watched it online at the Healthy Body Healthy Mind website (see below) and it was really interesting. It's approximately 30 minutes long.

Just click the link below, click on "Women's Health" and you'll see "Interstitial Cystitis: Private Pain" about halfway down the list titled: "As Seen On Public Television"...

PBS Documentary "Interstitial Cystitis: Private Pain" on "Healthy Body Healthy Mind"

One thing I found interesting was that the potassium test was repeatedly mentioned as the means of diagnosing IC and there was no mention of "cystoscopy with hydrodistention" as being a means of diagnosing it. I have heard of the potassium test mentioned in the documentary but my IC was diagnosed (after 12 years of suffering) with a "cystoscopy with hydrodistention".

While I had had 3 previous cystoscopies by 2 different urologists, it was my 4th cystoscopy (by a pelvic pain specialist) that resulted in me finally being diagnosed, properly, with IC.

Since my diagnosis, I have had dramatic symptom relief with a combination of oral medication and bladder instillations.

The pelvic pain specialist I see treats many IC patients. His staff taught me how to self-catheterize so that I can do my own bladder instillations at home. This idea scared me at first but I have gotten used to it.

Some advantages for me of doing my own bladder instillations at home are:

* No driving to/from my pelvic pain specialist (about 45 minutes each way) for bladder instillations in between regular appointments...

* No co-pay for each treatment since there is not an office visit for each bladder instillation...

* The convenience of doing bladder instillations when I need them (according to my doctor's instructions)... rather than needing to be fit into my doctor's office hours...

There are different types of medications used for bladder instillations. My doctor has prescribed two different medications for instillation into the bladder.

I am also fortunate that my pelvic pain specialist had the foresight to order pediatric sized catheters for me. With my vulvodynia/vestibulitis, I can't imagine using anything else!

As I mentioned above, I take oral medication to treat IC as well.

In addition, I avoid acidic foods that can aggravate IC (something that is also mentioned in the documentary).

I thought this documentary was very well done. The part I found especially interesting was where they showed pictures of a normal bladder lining as opposed to the bladder lining of an IC patient. The difference in appearance was striking!

Related link:

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

Here is more info on interstitial cystitis that was just emailed to me today by my local IC support group. Just click the links below for more information. Everything below is copied straight from the email I received:

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There are a lot of good links here, but you need to go to each website to have them connect.

Copied directly from the IC Network’s email...

Interstitial Cystitis Network

It's IC Awareness Week

Please join us in celebrating Interstitial Cystitis Awareness Week 2008, a week full of activities to help raise awareness for this little-known bladder condition and recognize the challenges of living with IC. This year’s theme is “When the going gets tough, could it be ‘123 IC’? Living with IC is tough. People with this painful and little-known condition need support and understanding. By increasing awareness of the symptoms most commonly associated with IC – Pain, Urgency, Frequency – which we call “the 123 of IC,” we aim to help people ask “could it be IC?” sooner.

This week, the National Association of Nurse Practitioners in Women's Health (NPWH), the Interstitial Cystitis Network and Ortho Women's Health & Urology invite you to participate in the following activities:

MONDAY, October 20

• A brand new documentary on interstitial cystitis, produced by Healthy Body Healthy Mind, will begin broadcasting on PBS stations across the country (PBS), a follow up to a documentary produced a few years ago. It will feature David Kaufman MD, Jeffrey Dell MD and IC patient spokesperson Terry-Jo Myers. Contact for your local PBS station for broadcast times or visit the Healthy Body Healthy Mind. You can also catch a highlights of the documentary in podcast form at: All About IC.

• “123 IC” contest winners & 2008 IC Ambassadors announced on All About IC

TUESDAY, October 21

• IC Week Podcast: “Interstitial Cystitis 101”

WEDNESDAY, October 22

• IC Week Podcast: “Talk to your healthcare professional when the going gets tough” with NPWH’s Susan Wysocki on All About IC

THURSDAY, October 23

• IC Week Podcast: “When the going gets tough, don’t let IC isolate you!” with ICN’s Jill Osborne on All About IC

FRIDAY, October 24

• Check out real patient stories and encouraging words on All About IC

For more information, please visit: All About IC. Please check out our Facebook and MySpace pages.

Don’t forget to pass this on and help to spread the word!

Ortho Women’s Health & Urology sponsors this week to help raise awareness about IC.

Bring IC Awareness Week To Your Local Community

A formal press release has been created for media outlets. Click here to view! I encourage each of you to share this by email with your local newspapers. Ask the health or lifestyle editors if they will do a story on IC in your community and, better yet, consider sharing your personal IC story with them. If you get interest, please let the editors know that the ICN would be happy to provide quotes, background information and more to help make that story a reality. They can contact Jill directly at: jill@ic-network.com or by calling (707)538-9442.

IC Support Leader Recognition

IC Awareness Week is also the perfect opportunity to express our thanks to those people who have made our journey so much easier, the local IC support group leaders. Talk about unsung heroes. IC support group leaders often work, with little or no help, to make meetings happen in their communities. They spend hours with patients in need on the phone or at the hospital. They raise awareness with their local newspapers. The advocate for the needs of IC patients with local doctors and the medical community. All for no pay and with little, if any, recognition. They are, in our opinion, the most important part of the IC community because they work at the local level and directly with patients.

When a support group leader finally retires, we have to make sure that they know just how important their efforts were. Case in point and one of my personal IC heroes, Molly Glidden, long time Boston support group leader who is stepping down this month. I’d like to take a moment to say “Thank You” to Molly for being such a great friend, for always being willing to help so many other patients and for working with me, behind the scenes, to offer support to some patients who were very, very ill. Molly is the epitome of a kind soul and she, along with countless other past and current support group leaders, deserves our recognition for a job very well done. Thank you for everything you’ve done Molly. You’re an IC hero!

We'd also like to say a fond farewell to Alice Terry who has, for many years, run the IC Support Group of Australia. She published their national IC newsletter and helped spread the word about IC throughout that country. That group is now being run by Dr. Katya Buc Stooke (Contact details below).

So please join us in using IC Awareness Week to thank your local IC support group leaders!! Give them a call, send an email, card or flowers. Better yet, ask if they can use some help in 2009! Remember, they can’t do it all by themselves. The more hands and minds involved the better!"

AND THIS....copied from ICA’s email news:

The website address follows:

Interstitial Cystitis Association

"The Interstitial Cystitis Association (ICA) would like to inform you about three exciting events sponsored by other groups that are taking place in the coming weeks. While these are not ICA-sponsored events, we thought these activities might be of interest to you.

Interstitial Cystitis Awareness Week 2008 October 20 - 24, 2008

The National Association of Nurse Practitioners in Women's Health (NPWH, a non-profit organization), Ortho-McNeil (the makers of Elmiron), along with the Interstitial Cystitis Network (ICN, a for-profit publishing company), invite you to participate in a week full of activities to help raise awareness for IC and recognize the challenges of living with it.

Click here to find out more about the 123 IC Campaign."

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.

Endometriosis Blog: Interstitial Cystitis Awareness Week October 20th-26th, 2008 (RE-POST)

RE-POST (with added link below):

IC Disease - It's IC Awareness Week: What's Happening

I apologize for posting the above link a little later than I had hoped. I am having a really rough week with pain.

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Original Post:

I wanted to give readers some notice that National Interstitial Cystitis Awareness Week is October 20th through 26th, 2008.

There are numerous ways interstitial cystitis (IC) patients and their loved ones can help raise awareness about interstitial cystitis.

Here are some ideas for how you can make your voices heard about this illness, which can often be debilitating...

++ You can write to your legislators and explain how interstitial cystitis affects you and your loved ones. Advocating for ourselves is so important. Contacting our representatives can have a positive impact! Awareness and research dollars are crucial to making headway and progressing in improving the quality of life for interstitial cystitis patients.

++ Another idea is to contact the media (print, radio, local TV news, etc.) and volunteer to share your story. You might be surprised that they might be responsive to your offer to be interviewed. I was interviewed about endometriosis a few years back on the health segment of the local TV news and it was an interesting experience that reached more people than we could have from other methods. If you contact media, you may want to do so as soon as possible. Newspapers have lots of deadlines... so the sooner you approach them, the better your odds for being featured. I would definitely suggest mentioning to them that Interstitial Cystitis Awareness Week is October 20th-26th, 2008! It could greatly increase your odds your being featured.

Thank you to Sandy of IC Disease: Life With Interstitial Cystitis, Vulvodynia, Incontinence, and & Other Bladder Conditions for bringing this awareness week to my attention.

See the "IC Disease" article about awareness week: October 20 - 26: National Interstitial Cystitis Awareness Week

For a resource on interstitial cystitis, see: The Interstitial Cystitis Association.

Related links that have mentioned interstitial cystitis previously:

Sunday, October 12, 2008 Endometriosis Blog: Vulvodynia And Vestibulitis, Launch Of Polish Website About Vulvodynia

Wednesday, October 8, 2008 Endometriosis Blog: Obituary Of An Endometriosis Support Group Or Beginning Of A Better System?

Monday, September 22, 2008 Endometriosis Blog: Interstitial Cystitis & Endometriosis

Friday, September 19, 2008 Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Sunday, September 7, 2008 Endometriosis Blog: NEW YouTube Video Clips! Endometriosis, Chronic Illness And Other Topics Of Interest!!

Monday, August 11, 2008 Endometriosis Blog: Check Out Newly-Added Co-Existing Illness/Chronic Illness Links in "Frequently Visited Sites" At Bottom Of Homepage!!!

Friday, August 8, 2008 Endometriosis Blog: SEVENTH Anniversary Of My Local Endometriosis Support Group!!!

Saturday, July 26, 2008 Endometriosis Blog: The Importance of Relaxation To Your Health...

Friday, July 25, 2008 Endometriosis Blog: Results Of YOUR FEEDBACK On Endo Blog TOPIC CHOICES POLL!

Tuesday, July 22, 2008 Endometriosis Patient Survives Yet Another Annual Exam Without Perishing On The Table :) :)

Wednesday, July 9, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

Saturday, June 21, 2008 Endo Blog Spotlight: Interstitial Cystitis, Endometriosis, and Co-existing Conditions/Chronic Illnesses

This article was posted by Jeanne via "Jeanne's Endo Blog" at www.endendoat.blogspot.com.