If you’re one of the estimated one million people in the United States living with interstitial cystitis, commonly referred to as IC, you’re well aware that the condition can have a profound effect on your daily life. But, you should also know that you’re not alone as there are many support groups and organizations who understand life with interstitial cystitis. These groups offer invaluable resources and information about coping, living, and thriving with the condition.
If there isn’t a group or association for IC in your area or neighborhood, you can always start your own by contacting the Interstitial Cystitis Association (ICA) who will offer helpful information about becoming a support group leader. Starting your own group can be a highly rewarding experience as you’ll play an active role in bringing individuals together who are dealing with the same issues.
Once you’ve established your group, spread the word to publicize upcoming meetings. Many urologists, general practitioners, gynecologists, and hospitals will post notices in their waiting rooms about relevant support groups for their patients. Informative flyers can be posted in libraries, at supermarkets, on community bulletin boards, and in hospital newsletters. Some groups feature guest speakers such as pain management specialists, and offer participants informative hand-outs containing the latest news on IC.
Some of the topics and issues discussed at a typical IC support group meeting include:
– Treatment topics including traditional as well as alternative approaches
– Diet, nutrition, and exercise
– Self-help tips and techniques
– Pain management
– Stress reduction
– Sexuality and pregnancy with IC
Support groups can be a wonderful place for sharing personal experiences with like-minded individuals who can offer understanding as well as helpful up-to-date information about interstitial cystitis. Although IC affects both men and women of all cultures and socioeconomic groups, many aren’t familiar with the condition or its painful effects. And many people aren’t comfortable discussing this type of condition with those who don’t have it themselves.