In the coming months we plan to cover issues related to IC/bladder pain on this blog. In the meantime, we wanted to call your attention to a great resource for those struggling to find support for and gather information about this often complex pelvic pain-related issue.
The IC/Bladder Pain Network, provides support for millions of men and women around the world with IC/bladder pain.
In fact, the organization worked hard during the month of September, which was IC/Bladder Pain Awareness Month, to spread the word about this often disabling condition. Now, Jill Osbourne, the president and founder of IC/Bladder Pain Network, will say a few words about the symptoms of IC/bladder pain as well as give us a look into an important effort now underway to help better understand the complexities of IC/bladder pain. Take it away Jill!
Jill Osbourne, president and founder of the IC and Bladder Pain Network
Thank you Steph and Liz!
IC Awareness Month was about asking for respect, compassionate care, and a cure for IC/Bladder Pain, not just during the month of September, but everyday!
IC patients struggle with symptoms very similar to those of a bladder infection including urinary frequency, a constant sensation of urgency, pressure and/or pain as their bladder fills, yet their urine cultures are negative. The frustration and the profound effect this condition has upon the patients’ ability to function at work, their ability to socialize, travel, and even upon their sexual function is undeniable. It can be a devastating blow to their quality of life!
An IC bladder is, essentially, a wounded bladder. Patients may have pinpoint hemorrhages or larger Hunner’s ulcers. Urine enters the wounds causing inflammation and/or pain. In addition to the search for new therapies that can help heal the bladder wall, researchers are trying to determine why patients often suffer from other, related conditions including: irritable bowel syndrome, endometriosis, chronic fatigue, chronic headache and TMJ. An abnormal pain processing or nerve hypersensitivity disorder may be part of the problem.
In late 2011, the National Institute of Health convened a multidisciplinary Working Group on Chronic Overlapping Pain Conditions to help unravel this mystery.
Now, I’d like to tell you a little bit about the IC and Bladder Pain Network. It started out as a small regional support group in Northern California has grown to be a vibrant internet based publishing company that now helps more than a million patients a year. Our goal has always been to bring support to patients who were too ill to attend their local meetings yet desperately needed that support. If you are dealing with IC/Bladder Pain, please check us out at www.ic-network.com.
If you have any questions about IC/bladder pain, please do not hesitate to leave them in the comment section!
Be well,
Jill
Comments
Hello, it is such a revelation reading the page on the role on scar tissue. I just couldn`t find any answer to why I have these tears at the perineal muscles although I have never had a natural birth just a C section and 3 Fibroid removal operation and one final histerectomy, which last proved to be Endometrial Stromal Sarcoma.
Just the word fibrotic muscle as scar tissue makes me scared.
So far I`ve been telling my problems about my tears and discomfort whilst intercourse to many doctors but nobody really figured it out.
I live in UK, could somebody recommend some good doctors under NHS? Might this have anything to do with the sarcoma? Thank you very much and I look forward for a reply.
Camelia