Hello!
In case you're wondering who we are, we are a group of individuals in and around the Oklahoma City area suffering with Interstitial Cystitis, which is a painfully chronic bladder condition that currently affects over 3-8 billion women and 1-4 billion men worldwide.
Interstitial Cystitis*in-ter-stish-uhl-si-sti'tis* not to be confused with "cystitis" is disease of the bladder that causes the lining to deteriorate, leaving it raw and inflamed. The best way I can describe it is if someone had lit a match and put it inside my bladder.
Currently there is no cure for the condition and many of the treatments are often not enough to manage all of the symptoms. Treatments include medications as well as surgery.
The disease varies in severity, but is known for being quite debilitating. More so than not, the individual goes undiagnosed for years, going from doctor to doctor without any kind of answer. The symptoms resemble that of a bladder infection, but is far from your typical case as the condition does not just go away on its own. For many the symptoms wax and wan from day to day, ranging from frequency, urgency, bladder spasms, burning while voiding, retention, moderate to severe pelvic pain, backaches and a long list of other uncomfortable symptoms. The condition is more times than not seen in those suffering from other auto-immune diseases. In the end, the sufferer has to learn to make many lifestyle changes and ultimately accept the challenges that this disease brings to their life.
Currently there is no cure for the condition and many of the treatments are often not enough to manage all of the symptoms. Treatments include medications as well as surgery.
The disease varies in severity, but is known for being quite debilitating. More so than not, the individual goes undiagnosed for years, going from doctor to doctor without any kind of answer. The symptoms resemble that of a bladder infection, but is far from your typical case as the condition does not just go away on its own. For many the symptoms wax and wan from day to day, ranging from frequency, urgency, bladder spasms, burning while voiding, retention, moderate to severe pelvic pain, backaches and a long list of other uncomfortable symptoms. The condition is more times than not seen in those suffering from other auto-immune diseases. In the end, the sufferer has to learn to make many lifestyle changes and ultimately accept the challenges that this disease brings to their life.
But with the support of others, we come together sharing in the journey of this disease and know that we're not alone. We find hope through sharing our stories, treatments and struggles, bringing to light more advocacy for a disease hardly discussed.
We hold support group meetings and will post the dates regularly.
We are always looking for new members!
Although we are a small group, our support is ever-growing.
For more information on this disorder please visit the links below:
We hold support group meetings and will post the dates regularly.
We are always looking for new members!
Although we are a small group, our support is ever-growing.
For more information on this disorder please visit the links below:
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