'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.

Endometriosis Blog: Spotlight On The Interstitial Cystitis Association!!

Since so many readers of this blog have interstitial cystitis as well as endometriosis and since the illnesses have been correlated in studies, I would like to spend some time today on interstitial cystitis.

Founded in 1984, the Interstitial Cystitis Association (ICA) is the authoritative source of interstitial cystitis (IC) information in the United States.

The ICA:

+ Provides the most comprehensive & up-to-date information on IC

+ Offers IC patients, their families, and friends support

+ Educates the medical community and the public about IC

+ Represents patients and advocates for research funding

+ Provides pilot research funding to find effective treatments and a cure for IC

Since I'm on the email list for The Interstitial Cystitis Association, I receive wonderful updates on interstitial cystitis on a regular basis. The one I just received, however, is special enough to warrant some extra attention. It is full of information on what's happening in the interstitial cystitis world.

I'll include the link to it in a moment but first I'd like to explain a bit about my personal experience as an interstitial cystitis patient. As an interstitial cystitis patient... I know firsthand the unbearable pain it can cause! I also know that it's often misdiagnosed or under-diagnosed. (It took 12 years and 3 urologists telling me I didn't have interstitial cystitis for me to finally find a pelvic pain specialist who said, "you definitely do have IC"!)

The interstitial cystitis treatment regimen he has me use isn't always super-convenient but it is well worth the effort because it really reduces the severity of my symptoms significantly!! (In addition to taking an oral prescription that reduces my symptoms, I self-catheterize at home to administer what's called a 'bladder instillation'. Essentially, the medications (there are two of them) that are instilled into my bladder (temporarily) are helpful for me for controlling my symptoms (in combination with the oral medication therapy).

Annual Report of The International Cystitis Association: A Year of Transformation

http://www.ichelp.org/Portals/0/AnnualReports/2007AnnualReport.pdf

In this report, you'll hear that there has been a "changing of the guard" at ICA:

Vicki Ratner stepped down and the ICA welcomed a new Executive Director. After almost 25 years as the ICA’s guiding force, Vicki Ratner, MD, stepped down from her positions as ICA President and Chief Medical Officer. The ICA is profoundly grateful to Dr. Ratner for her tireless efforts on behalf of IC patients worldwide. Her work has had direct impact on the quality of life for all people with interstitial cystitis.

Barbara Gordon, MBA, RD, is the new ICA Executive Director. Drawing upon a wide range of healthcare and managerial experience, as well as a deep understanding of the special challenges confronting people who suffer from chronic diseases, Gordon fully embraces the goal of the ICA to give hope to countless interstitial cystitis patients around the world.

Several themes emerged in the International Cystitis Association's report.

These are some of the words they used regarding the past year for ICA: transforming, embracing, advocating, increasing awareness, empowering, appreciating, ensuring...

Research programs---

Some key points made in the research report cited in the above link include:

+ Research confirmed that IC doesn't travel alone, and that patients often have other problems such as irritable bowel syndrome and fibromyalgia.

+ Researchers explored the cost of IC and found it to be much higher than that of many other chronic illnesses such as peripheral neuropathy, low back pain, fibromyalgia, or rheumatoid arthritis.

+ Many innovative treatments for IC were further developed this year. Oral medications, bladder instillations, external and internal stimulator devices, and hands-on interventions advanced along the pipeline, all with the potential to provide better IC symptom relief.

Personal Impact:

Researchers from the National Opinion Research Center (NORC) at the University of Chicago presented the first results from the NORC/ICA METRIC epidemiology survey at the American Public Health Association’s 135th Annual Meeting and Exposition in Washington, DC.

The study was based on nearly 3,000 responses to a 28-page survey that gathered information on IC patients’ life experience.

The study found that:

40 percent of respondents reported low self-esteem as a result of IC

42 percent believed that IC caused them to “miss out on life”

31 percent admitted that IC led them to have suicidal thoughts

22 percent noted that IC has caused them to lose close, meaningful relationships

66 percent said IC had negatively affected intimacy

71 percent noted pain during sexual activity

Patients Have Record Impact on Capitol Hill:

“Because of the efforts of IC patients, policymakers on Capitol Hill are recognizing and more aggressively addressing the challenges chronic pain patients face from a fractured healthcare system that limits access to the multimodal therapies patients need and from the Social Security Administration’s bureaucracy in granting disability benefits. Our advocates have also helped legislators recognize the need to influence the direction of federal research so that NIH is investing in future therapies and cures for these intractable conditions,” said Government Affairs Consultant Libby Mullin.

Here is the contact information for the ICA:

Interstitial Cystitis Association
110 North Washington Street
Rockville, MD 20850
800-HELP ICA (800-435-7422)
www.ichelp.org

Thank goodness for all of the great work this organization does. It helps so many people!

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

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

*** Please read the disclaimer at the top of this blog. ***

As many of you know, interstitial cystitis is one of the illnesses often found in women who have endometriosis. Interstitial cystitis affects both men and women but there have been research studies showing a higher incidence of IC in endometriosis patients than in non-endometriosis patients.

Wow! I found a great interstitial cystitis video clip (on http://youtube.com/watch?v=myjd4UMtCfw) and I decided to include it here. It was posted on YouTube by “YourUpdate” on June 21, 2007.

Here is the description of the clip from www.YouTube.com: The Interstitial Cystitis Association (ICA) educates both patients and healthcare providers to better understand and treat people with IC. Contact The International Cystitis Association (ICA) at for info at: http://www.ichelp.org/



Another source of information on IC is the National Institute of Diabetes and Digestive Disorders and Kidney Diseases (NIDDK):

See their website at:

http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

I had had interstitial cystitis for 12 years before finally finding a doctor who properly diagnosed me. My 4th cystoscopy (with hydrodistention) was performed while I was under anesthesia for one of my laparoscopies for endo.

The cystoscopy was done at that time because I still presented with classic IC symptoms despite 3 previous negative cystoscopies prior to my diagnosis by a different doctor. (Ironically my first 3 cystoscopies were done by 2 different urologists and my proper diagnosis was finally made by a pelvic pain specialist).

Anyway, I have a regimen that I follow and it does help. I believe I had IC for the 12 years leading up to my official diagnosis. Whether the appearance of the inside of my bladder lining changed much in those 12 years or whether my pelvic pain specialist was better at properly diagnosing IC than the urologists had been, I may never know. All I know is my IC has responded to IC treatment.

It is crucial to advocate for yourself. Like the interstitial cystitis patient in the video clip, I believe it is crucial for IC patients to “take an active role” AND to “get the correct diagnosis from your doctors”. IC is often misdiagnosed.

HINT: If you do get diagnosed with IC and your doctor prescribes medications to be instilled into the bladder, the pediatric size catheters are a 'must' in my opinion. So if you suspect you have IC and you DO end up getting diagnosed with it, just keep that in the back of your mind. My doctor automatically ordered the pediatric size for me but not all doctors may think to do this.

That reminds me… for anyone who is unaware of this, you can request a smaller sized speculum for Pap smears. Just ask your GYN and you may find pelvic exams are less painful!

Last but NOT LEAST: I found this amazing blog today on chronic illnesses. Actually I found this blog a couple of weeks ago & subscribed to it then --- BUT the IC stuff just jumped out at me today's mailing. There are just TONS of IC links near the bottom part of the (emailed via my subscription) link listed below.

http://chronichealthblog.com/category/interstitial-cystitis/

If you even think you might have IC, these links (the last link above) are worthwhile reading (I think) from what I saw when I skimmed through them. (I simply didn’t have time to read through them ALL but there are just LOADS of them)!

Follow your gut and find the medical care you deserve. After all, we ALL deserve a decent quality of life.

Let's skip past "striving to get well" and skip right to "thriving" if at all possible.

Be well!

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