'Jeanne's Endo Blog' Is Featured In Interstitial Cystitis Association's Newest Cafe ICA Newsletter!!

Recently I had the pleasure of speaking with Penny Allen who is a Medical Writer for The Interstital Cystitis Association.

I had previously written here about our conversation regarding interstitial cystitis. (We specifically discussed self-catheterization and bladder instillations as a treatment method). Please see related links on IC at the bottom of this post.

The latest edition of Cafe ICA (November 2008 Cafe ICA, Volume 8, Number 11) was published today.

To sign up for the Interstitial Cystitis Association's Cafe ICA (a free online monthly news digest), just click here:

Cafe ICA (see left side of screen to sign up)

When I was first diagnosed with interstitial cystitis, I joined the Interstitial Cystitis Association and found them very helpful and informative!

To learn more about the Interstitial Cystitis Association and/or to become a member, just go to their website:

Interstitial Cystitis Association

The ICA has more in-depth articles in addition to the free monthly Cafe ICA digest mentioned above. So check out their site for more info.

Here is today's mention of this blog from the Cafe ICA online digest!

(November 2008 Cafe ICA, Volume 8, Number 11)

Endometriosis Blogger Makes the IC Connection

Just as bloggers have transformed political news, they are also transforming health news. Newspapers, magazines, and TV have reported much more on IC in recent years. But now, IC and the ICA are also getting reported on in the blogosphere.

Blogs by savvy patients help raise awareness every day and get good information out to those like them, like Jeanne's Endo Blog. The blog is mainly about endometriosis but also about associated conditions, including IC. In fact, a substantial share of IC patients have endometriosis (estimates range from 30 to 85 percent) and vice versa. And sometimes, IC is misdiagnosed as endometriosis. This blogger knows both well, and on September 19, 2008, she put the spotlight on the ICA and its work. She took note of the ICA's Annual Report for 2007, a year that brought much more awareness that IC doesn't travel alone. Now, major research effort is focused on the connections between the conditions in the hope of homing in on the cause and better treatments. She has also blogged about the PBS documentary "Interstitial Cystitis: Private Pain," Interstitial Cystitis Awareness Week, and Bladder Health Month.

In addition, Jeanne keeps her finger on the news pulse of many other related conditions, such as fibromyalgia and vulvodynia, and on awareness and support efforts from all over the world. Often, she just plain inspires, pointing her readers to moving art, poetry, and thoughts, such as this:

"Life's most urgent question is: What are you doing for others?"
-Martin Luther King Jr.

Please note that there are over a dozen links on IC on this blog but here are a couple of related links:

Friday, November 7, 2008 Endometriosis Blog: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization


Wednesday, October 22, 2008 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: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization

Today I had the pleasure of chatting with Penny Allen, Medical Writer for the Interstitial Cystitis Association.

Ms. Allen interviewed me about bladder instillations and self-catheterization after reading on my blog that I do this at home to treat my interstitial cystitis.

I was diagnosed with interstitial cystitis by my pelvic pain specialist after having a cystoscopy and hydrodistention while under general anesthesia. (I had one previous cystoscopy and hydrodistention while awake. I don't recommend this)!

For my IC diagnosis, my doctor performed the cystoscopy and hydrodistention while I was under anesthesia for a laparoscopy to remove endometriosis.

After my diagnosis, my doctor prescribed a combination of an oral medication and bladder instillations. The bladder instillations are a method of putting medications into the bladder by self-catheterizing. My doctor's office taught me how to self-catheterize and this is something I do at home.

When my doctor first brought up the idea of self-catheterizing at home, I was a bit taken aback. I couldn't imagine doing it myself versus going in to the doctor's office to have it done.

As my doctor's office pointed out, if I learned how to administer these medications at home I wouldn't need to drive in to their office, pay a co pay for each bladder instillation, or conform to the doctor's office hours. I could do the bladder instillations at home when I needed them (following the doctor's directions on frequency of bladder instillations, of course). Doing them at home would be more convenient and less expensive. I wouldn't need to "commute" 45 minutes each way to the doctor's office to get the bladder instillations.

Ms. Allen is writing an article about bladder instillations and self-catheterization for the Interstitial Cystitis Association newsletter.

When I was diagnosed with interstitial cystitis, I learned of the Interstitial Cystitis Association through my doctor. I joined the ICA and received informative newsletters about IC. I found these newsletters very helpful.

Ms. Allen interviewed me because she wanted my input about the process of self-catheterizing to administer bladder instillations and the results I have had from bladder instillations to treat interstitial cystitis. I explained that I used to have SEVERE urgency and frequency.

Prior to diagnosis and treatment for IC, I was used to trekking to the bathroom about every 15 minutes during my periods and the remainder of the month I was going about once an hour.

Since taking the oral medication combined with the self-administered bladder instillations, my frequency has decreased to about once an hour during periods and once every 3 hours at other times in my cycle. That's quite an improvement!!

Many IC patients may not be aware of this treatment option. Others may be fearful of self-catheterizing. I have to say that once I got used to doing bladder instillations (which wasn't as difficult as one might think), I appreciated the convenience of doing them at home.

Hopefully, spreading the word about this helpful treatment option can help other IC patients.

After 12 years seeing 2 urologists and having 3 cystoscopy procedures come up negative, I was finally properly diagnosed by my pelvic pain specialist on the 4th cystoscopy. I am grateful for the relief my IC treatment has provided.

For a blog about interstital cystitis, see IC Disease:
Life with Interstitial Cystitis, Vulvodynia, Incontinence, & Other Bladder Conditions

For more information about interstitial cystitis, contact the Interstitial Cystitis Association. I found becoming a member of ICA helpful and informative.

It was a pleasure to speak with Ms. Allen of Interstitial Cystitis Association today about bladder instillations. My regimen for treating IC (bladder instillations plus an oral medication) has significantly decreased my urgency, frequency and pain issues and has improved my quality of life. For IC flare-ups, I can increase the frequency of my bladder instillations as per my doctor's orders.

For more information about interstitial cystitis, please refer to previous articles I have written about IC. The link listed below will refer you to NUMEROUS posts about interstitial cystitis.

Related link:

Wednesday, October 22, 2008 Endometriosis Blog: More Information About Interstitial Cystitis Awareness Week

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