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3/14/2009

"Jeanne's Endo Blog": Interstitial Cystitis Is A Common Co-Existing Illness To Endometriosis... See Article About Interstitial Cystitis...

Are you one of the many patients with both interstitial cystitis and endometriosis like I am? If so, keep reading because I'm sure you'll find this article interesting. Even if you don't have one or both of these conditions, you may find it informative.

Is there "cross talk" between organs?

Here is a very interesting article that my friend (and local endometriosis support group member) Roberta sent me.

It's about interstitial cystitis, pelvic pain, colon nerves, bladder nerves, the spinal cord, etc. It's very interesting!

Pepperoni Pizza And Pelvic Pain

By the way, the article states, "the pelvic pain is so intense some women inject anesthetic lidocaine directly into their bladders to get relief". Well, I am here to tell you that bladder instillations are very helpful and not as scary as they may sound. There are various medications used for bladder instillations.

In addition to taking oral medication for IC, I do self-catheterization for bladder instillations. This provides tremendous relief. Learning how to self-catheterize meant I don't have to drive 45 minutes each way to my doctor for each instillation, I don't have to conform to my doctor's schedule, and I don't have to pay a co pay for each instillation. When my pelvic pain specialist first mentioned self-catheterizing at home, I looked at him like he had 10 heads. I have to say, though, that I'm glad I learned how to do it. It's far more practical to do bladder instillations at home when it's convenient for me (following my doctor's directions on frequency of treatments, of course).

Related links:

Too numerous to list. Please use search engine (top left of blog) to look for other interstitial cystitis posts.

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

5 comments:

heyLyss09 said...

This is really interesting. I was diagnosed with IC years ago and I'm now about to have a lap for suspected endo.

Jeanne said...

Hi heyLyss09!

My IC went undiagnosed for 12 years. I knew I had all the classic symptoms but 3 urologists said no.

Finally, I found a pelvic pain specialist who deals with IC all the time. While I was under anesthesia for a lap, he did my 4th cystoscopy and said, "you definitely have IC"!

Thankfully, now that I am being treated for IC... my IC symptoms are under better control than for the 12 years that doctors brushed me aside.

If you have never had a lap, be sure to read my laparoscopy post (see below). It might help.

http://endendoat.blogspot.com/2009/02/jeannes-endo-blog-what-can-i-expect.html

Also, please check out my YouTube channel. Just click on the YouTube channel link in my right sidebar (top) to access my YouTube channel. (I just started promoting the channel 2 days ago. Any ratings or comments on videos are welcome)!

If you have any questions, let me know. I've had endo for 27 of my 40 years and have been involved with in-person endo support groups since 1992. (I started a group here locally in 2001). So I may know something that would be helpful to you.

If you're on twitter, join us in coding all endometriosis-related messages with this:

#endo

Also, here's our endometriosis awareness petition that anyone (male, female, young, old) can sign to support the 89 millon women and girls wordlwide with endo.

Endo is more common than AIDS and more common than cancer (per Ohio State University Medical Center). Endo awareness is vital.

The typical delays between onset of symptoms and diagnosis need to be improved. Patients are suffering in silence.

Here's the petition (300th signature came in yesterday):

http://www.gopetition.com/online/22963.html

Sorry to overwhelm you. I'm just excited because it's Endometriosis Awareness Month and we've actually been making some headway at getting endo some increased awareness. :)

Have a great day and thanks for stopping by.

Jeanne

Jeanne said...

Alyssa,

I checked out your blog. (Welcome to blogging!)

For some reason, it would not allow me to comment on any posts. It kept locking up. So hopefully you'll see this message. I can't think of any other way to contact you.

Have a wonderful vacation!

I'm sorry about what happened (ultrasound flashbacks). :( Your feelings are very common and normal after what you've been through.

By the way, I think you'd really like my friend Alicia's blog "Yaya Stuff". She has been through multiple miscarriages and blogs about it eloquently...

http://yayastuff.blogspot.com/

She also has a great sense of humor, despite all of the adversity she's been through.

Take care,

Jeanne

P.S. I'm "following" you on Blogger. :)

heyLyss09 said...

thanks for all of the info. Jeanne!

I've been told a couple of times about the comment problem. I'm not sure what's causing it since I don't have any security preferences set for it.

It's great to be in touch with someone who understands the endo AND IC stuff!

I'll be following your blog as well, and will check out Alicia's.

Alyssa

Jeanne said...

Alyssa,

My pleasure! :)

Sometimes Blogger can be "mysterious". Goodness knows I've had my own Blogger issues!

I've had endo since 1982 and my IC symptoms started in 1992. So, yes, I understand. After 12 years of battlings doctors/switching doctors, I finally got that crucial IC diagnosis in 2003.

The combination of oral medication and bladder instillations (self-catheterization at home) has helped tremendously!

With endo, I wish I had known "then" what I know now regarding alternative medicine. There's far more available for treating endo besides Traditional Western Medicine's "drugs & surgery".

Drugs and surgery have their place but there's a world of other options out there that too often aren't well-understood.

I have learned so much from the women in my (in person) endo support groups and from fellow patients online as well.

That sounds great. Alicia is a good person for you to connect with. She blogs about loads of topics but if you search her blog (with the search box in the top left corner) for what you're looking for, you'll find it more easily.

Have a great day!

Jeanne

HAVE YOU SIGNED YET?? Please Sign Endometriosis Awareness Petition Below! Awareness YEAR-ROUND!