Interstitial Cystitis - Describe Your Experience

The eMedicineHealth doctors ask about Interstitial Cystitis.
Please describe your experience with interstitial cystitis.
Share your story with others:
eMedicineHealth appreciates your comment. Your comment may be displayed on the site and will always be published anonymously.

Tell us a bit about your background to make your comments more useful to other eMedicineHealth users. (Optional)

Screen Name: *

Gender of Patient: Male Female

Age Range of Patient:

I am a: Patient Caregiver

Enter your comment (required)

* Screen Name will appear next to the published comment. Please do not include your full name or email address.

By submitting your comment, and other materials (collectively referred to as a "Submission") to eMedicineHealth, you grant eMedicineHealth permission to use, copy, transmit, publish, display, edit and modify your Submission in connection with its Web site. eMedicineHealth will not pay you for your Submission. You represent that you have all rights necessary for eMedicineHealth to use your Submission as set forth above.

Please keep these guidelines in mind when writing your comment:

  • Please make sure you address the question asked.
  • Due to the overwhelming number of comments received, not all comments will be published.
  • When selecting comments to publish, our staff will choose those that are educational and complement the topic. Please try to stay on topic.
  • Your comment may be edited. We would typically edit comments to make them clearer and more readable. We will remove personal information such as last names, email and web addresses, and other potentially harmful information.
  • We will not notify you if your comment has been published. We suggest that you check back on the topic article regularly.
  • We do not provide medical or healthcare advice, treatment, or diagnosis.

Thank you for participating!

I have read and agree to abide by the eMedicineHealth Terms and Conditions and the eMedicineHealth Privacy Policy (required).

To prevent our systems from spam, please complete the following prior to submitting your comment.

Please select the black triangle:

See what others are saying

Published: February 27

I was diagnosed with interstitial cystitis (IC) in 1994 when I was 42, I'm now 62. The first thing my urologist said after the diagnosis was that IC is acerbated by stress, and I have to get out of the 9-1-1 center. From my experience physical and emotional stress does affect. I went through all the treatments, medications and dietary restrictions. I felt like I was in hell for 3 years. I have been in remission for 20 years. Now it's back in full force! My urologist retired years ago, so I'm seeing a new one next week. I have 9 days to go. I'm in so much pain, confined to my home and not able to get more than 30 to 45 minutes of sleep at a time. I'm so afraid I am in another nightmare..

Published: September 10

I began my experience with interstitial cystitis with awful and extreme pain in my lower pelvic area. The pain became so bad that I could not do any simple household chores or complete sentences. I was first sent to my urologist where a cystoscopy was performed. Then I was put on medications including, Hydroxyzine, Elmiron, Levsin SL and Flexeril. This slightly relieved my pain but not enough to make me feel I was still among the living. I then was sent to a pain specialist where they went over my test results and spoke to many of my doctors. I have had Crohn's disease, chronic fatigue, osteoarthritis and thyroid disease for many years. I was told that this interstitial cystitis was part of an auto-immune disease grouping that many people get. It’s as if your body is attacking itself, thinking good cells and tissue are bad and trying to destroy them. But of course, there are no bad cells or tissues, and my good tissues are being destroyed in this process. I would greatly urge anyone with this to be seen by as many doctors as possible for the ultimate in medication coverage. Then one must see a pain specialist to be given the most amount of pain relief medication possible without making a zombie out of you. With these things being done you will not be cured, but you will be able to “live” a better, more enjoyable life. .