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7/09/2008

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.

2 comments:

Yaya said...

Thanks for all this info. It is really important to have a good team of doctors who are educated with endometriosis (as I'm learning from you!). I did not know that about the catheter. I did know that about the speculum and it makes me wonder why they use the big one when they don't have to?

Jeanne said...

Alicia,

No problem!

Yes, having a good team of doctors is so important! Many doctors are alarmingly uneducated about endometriosis!

So the burden is on the patient to seek out doctors who will provide appropriate treatment options.

I use the pediatric-sized catheter for bladder instillations that I do at home in addition to taking an oral medication for my interstitial cystitis.

Self-catheterizing may not be my favorite thing to do --- but it beats the alternative!

The nurse in my pelvic pain specialist's office taught me how to do it. Since going into the office for bladder instillations would involve a 40 minute commute each way PLUS a copay for each office visit, the idea of doing my own bladder instillations at home became more appealing to me (while intimidating at first)!

It's not really that hard once one gets used to it. It really helps me with my IC symptoms. So that really motivates me to do it.

I do both the bladder instillations and the oral medication because that combination works best for me.

It has really had a positive impact to regain some control over the bladder symptoms and decrease the pain.

You pose a VERY good question about the speculum! I have no idea why doctors would use the larger sized one on ANYONE when the smaller one does the trick!!

Having vulvodynia/vestibulitis, IC, and endo... the smaller speculum is a must for me! I still jump off the exam table (a reflex I cannot help!!) during an exam but at least I don't have tears streaming down my face from the horrible pain of a larger speculum.

Jeanne

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