The Urinator

Since this blog is supposed to coincide with my Women's Studies course and the International Womens Media Foundation, this week we will be discussing a topic that fits perfectly into the subject of Women's health. I believe that many health problems that affect women aren't discussed openly or researched nearly enough. Drugs to treat ailments are usually only experimented and dosed for men and their needs (See Viagra, Flomax, and Rogaine.) Since November is Bladder Health Month, I would like to discuss and describe a health problem that millions of women live with, many of which go undiagnosed. Men are suseptable to it too, but many more women have it, including me.

Its name is Intersticial Cystytis. It is a chronic irritation of or complete lack of the lining of the kidney, bladder, and urethral system. There is no cure and its cause is unknown. It is suspected to be autoimune, but it may also be hereditary, allergies, etc. It feels like the worst UTI you have ever had and also includes pelvic floor dysfunction, constant urination (60 times per day),burning,vuvodynia, bladder spasms, razor sharp pain, bladder ulcers, painful intercourse, and back pain. The disease is more prevelent in those with endometriosis, migraines, irritable bowel syndrom, and fibromyalgia.

The condition truly is excrusiating and often compared to that of stage 4 cancer. One's quality of life is greatly compromised. Eating, drinking, using the bathroom, sex, money (medical costs and missed work), working, exersicing, stress, and sitting for long periods of time make IC worse. So, as you see, it is very difficult to live a fulfilling life with IC. According to the IC help network, "Millions suffer in silence." I try to educate as many people as possible about the condition so Women can know that they aren't crazy. It's amazing how pain not only affects the body, but the mind as well.

Diagnosing IC is complicated and painful in and of itself. The test requires a cystoscapy, where they insert a camera into your urethra and into your bladder to look for Hunners Ulcers. They also cathiterize you and put potassium into your bladder. If it is extremely painful (it will be if there is a damaged lining) than one is presumed to have IC. IC patients visit an average of five doctors before receiving a diagnosis. I would like to be a part of changing this.

In addition to the pain, IC is an extremely expensive disease to have. There is only one FDA approved medication for IC, Elmiron, and it is still patented. It also takes six months to one year to work and makes your hair fall out. Most of the other medication used to treat IC include antidepressants(not a disease of the mind, it's physiological), bladder tighteners (bad for pelvic floor dysfuntion and stresses the muscles) or are meant for men (Flomax, a prostate medication) and not FDA approved for IC or for use in women. The last resorts for treatment include lidocaine bladder instillations, narcotics, nerve blocks, and bladder surgery (usually ineffective.)

Ok, so where is the good news. Well, all of last year I flared and was on all sorts of medication including pain pills, pyridium, and Flomax. One day, a women stopped me in my Urologist's office. We were both there for bladder instillations. She sat me down and told me about how she has lived with IC for over 15 years. I started crying. I had lived with it for four and had been in constant pain for most of it. She told me about the IC diet. From that day on, my life changed. How could no one have told me about this earlier. I followed the diet and started at a chiropracter. I passed on her knowledge to other IC'ers and found that the more I talked about it, the more I found others like me. Everyone seemed to have a tip or trick that helped. I found a physical therapist, a support group, a mentor, and a Urogynecologist in addition to my Urologist. My life changed. I flare only two to four times a month instead of four to five times a day. I know that there is pain in the future for me, but I also know that there will be a way out. That is a start.

The lesson: If women felt free or were encouraged to talk about their health, how much more would we know? I hope this post helps women to talk about the stuff that pains them, even if it is uncomfortable or embarrasing. Now, I talk about my bladder as if it is my friend, well my frenemy at least and laugh at the crazy things it does sometimes. I embrace the name my boyfriend gave me, "The Urinator" and laugh until the pain subsides.

If you or someone you know are suffering from a painful bladder sydrome or just want to learn more, please visit the following links.

IC At A Glance Fact Sheet
http://www.ichelp.org/Portals/0/pdf/InterstitialCystitisAt-a-Glance.pdf

Interstitial Cystitis Association Help Network
phone: 1-800-HELP ICA
web: http://www.ichelp.org

IC Art
www.art4ic.com

"You Don't Have to Live With Cystitis" (The book that changed my life)

The PBS film Interstitial Cystisis: Private Pain

Glamour magazine's article on Painful Intercourse
http://www.glamour.com/sex-love-life/2008/11/better-sex-for-women?printable=true

US News and World Report Article
http://health.usnews.com/articles/health/healthday/2008/11/15/many-ignore-symptoms-of-bladder-trouble.htm

The blog is mainly about endometriosis but also about associated conditions, including IC. http://www.endendoat.blogspot.com