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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.

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


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Reading: Endometriosis Blog: Conversation With Penny Allen Of The Interstitial Cystitis Association About Bladder Instillations And Self-Catheterization

5 comments

1 Kerry { 11.12.08 at 6:25 pm }

Jeanne, Want to tell you how much your constant advocacy for endometriosis, IC, chronic illnesses and for those in the midst of other adversity inspires me.

I can relate to your joy in getting much of your life back through self-catharization.

Want to share my little IC miracle tx. in case it might work for someone–Hydroxyzine HCL. I take it everynight and it changed my life, much like your tx. has altered yours Jeanne (I was able to take the bathroom out of our van!)

When I first got IC (1985) there were no tx’s. It gives hope that progress is being made. I hope in twenty years we might have a cure!

Congrats…on your interview and for spreading the word about IC!

Kerry

2 Jeanne { 11.12.08 at 6:33 pm }

Kerry,

Thank you!!

I’m so glad you found something that helps you!! 🙂

Yeah, it was interesting to talk with Penny. ICA had found my blog somehow. Penny’s going to quote me in an article she’s writing on self-catheterization.

Thank you!

Jeanne

3 Barbara MessnerNo Gravatar { 03.12.13 at 10:22 pm }

I’m a little embarrassed that as somebody who works in the medical field I had never heard of using catheters as a way to deliver drugs. I’ve had plenty of experience with catheterization for urinary issues, but this was totally new to me. Thanks for talking about this–it sounds like it could be a huge help to those who need it!
Barbara Messner´s last [type] ..Self Catheterization Supplies: A Beginner’s Guide

4 Shelia MagillNo Gravatar { 03.16.13 at 12:34 pm }

I just wanted to say thanks for having the courage to talk about this subject. I work in the medical field and many of the people who would benefit SO MUCH from self-catheterization refuse to talk about it because they’re embarrassed.

Even though I can understand why they feel that way, it kills me because they are giving up so much freedom and independence! Hopefully some of them will see posts like this and be inspired to talk to their doctor more seriously about cathing options.

-She
Shelia Magill´s last [type] ..Self Catheterization Supplies: A Beginner’s Guide

5 JeanneNo Gravatar { 03.23.13 at 2:32 pm }

Welcome Barbara!

Honestly, I don’t think many people outside of interstitial cystitis patients and their medical providers are aware of the use of catheters for the administration of medication. It really does help many IC patients.

Welcome Shelia!

Thanks. It’s unfortunate that some people are not getting the benefits they could due to being embarrassed about it.

~~~

Jeanne

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