SCLERO.ORG
Search
Patient & Caregiver Stories Main Menu

(English) by First Name: A B C D E F G H I J K L M N O P Q R S T U V-Z

By Language: French   German   Greek   Italian   Polish   Romanian   Russian   Spanish   Turkish

By Illness: Main List, Linear/Morphea, Systemic Scleroderma, By Symptoms

Michael K: Interstitial Cystitis

After nine months of going through pain I had a total breakdown.

For Michael by Sherrill Knaggs, ISN Artist I was first diagnosed with interstitial cystitis (IC) when I was twenty-two years old. But I want to go back a bit in time.

In the summer of 1994, I was having anxiety attacks. My doctor prescribed Valium. After taking Valium I still had the anxiety. Instead of taking more drugs I thought I would take antihistamines to help sedate me. But instead of taking the recommended dosage, I took more than suggested. It did calm me down. It actually felt good in a sense. My anxiety was all but gone.

About a month later I noticed I had trouble emptying my bladder! I was alarmed. I also noticed I was making more trips to the bathroom. Every time I would void I could feel the urine dripping into my bladder. I could not get comfortable. Of course, I stopped taking the antihistamines, but the damage been done.

I went to a urologist soon after. He was very nice. He gave me medication to relax my enlarged prostate, which was caused by the overuse of antihistamines. I thought I made it out of the forest unscathed, but it was just a precursor of things to come.

The medication made my IC much worse. I would go to the bathroom at least twenty times a day. I would cry and ask why me. My doctor was clueless. He kept giving me different drugs, but they all made my symptoms worse. After nine months of trial and error, I went to Stanford University Medical Center to have my bladder examined. The end result was I had a severe case of IC. I was upset. I often blame myself for getting IC, because I only had this problem when I took too many antihistamines. Although looking back, when I was a child, I realized I always went to the bathroom more frequently than others. Maybe the disease was dormant for all those years.

In 1996, I had a procedure done to enlarge my bladder walls. DMSO was also used. That must have upset the IC! After the procedure I felt razor blade type pain in my rectum, and it hurt when I urinated. I found out I had an infected prostate and a bladder infection.

After taking antibiotics to cure the infection I got a yeast infection. When taking a drug to cure the yeast infection I got a bacterial infection. This went on at least two to four times. I feel like I play musical chairs with bacterial and yeast infections.

After going to countless doctors and spending thousands of dollars as I did not have insurance because no insurance company at the time would take me because I had a pre-existing condition, the antibiotics have left me with chronic tonsillitis. To this day I have yet to have them removed. I know I should as they hurt now and then. Sometimes the pain is much worse. I also noticed this pain in my rectum.

After nine months of going through pain I had a total breakdown. I stopped eating. I would sleep nineteen hours a day, and dream about dying. Until I read a book about IC that described the rectum pain. I was happy to find out I was not losing it.

I went to another doctor that my therapist recommended, and he put me on Ultram, which I am still on today. Ultram really helps to kill the pain. I urinate less frequently than I did before the procedure, so it did help. I still have flare ups, where I feel a dull pain in my bladder, and I still go to the bathroom more often than normal people, but all in all, it does not really affect my life as it once did.

The most troublesome thing about IC is feeling the urine in my bladder before it is full. That always bothers me and upsets me, but I am managing my way through it.

To Contact the Author

Michael
New email address needed 09-26-06 SLE
Old Email Prefix: MRKIV
Story submitted: 11-27-02
Story posted: 11-29-02

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith R. Thompson
LINKS
Interstitial Cystitis

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

Go to Michela P: Swelling in Hands and Feet
 
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

TOLL FREE HOTLINE 800-564-7099
Free to U.S. and Canadian Callers. Ask for our Free Info Packet by mail or email!
Scleroderma, Pulmonary Arterial Hypertension, and related illnesses.
Privacy Policy.

 
The most important thing in the world to know about scleroderma is sclero.org!
Donate Now
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.