IC/BPS Patients Refuse To Suffer In Silence

Demanding Compassionate and Humane Pain Care

September 1, 2017

When IC/BPS patient Lisa Benshabat took her life on February 9, 2016, her dreams could no longer sustain her. Daily, agonizing pelvic pain and a medical community that was unresponsive to her needs led her to the ultimate choice. By her 24th birthday, Lisa had been to more than ten specialists and most doctors dismissively said “it’s all in your head.” Her pain was real, her diagnosis undeniable and confirmed by multiple urologists yet, in the end, most refused to believe that she was suffering.

Her mother Gail said “What would bring a young woman or young man to the brink of ending of their life? It’s called lack of hope. Lisa had very few options offered to her. There was no collaboration between her medical care providers to ensure that her pain was controlled and that her emotional health was monitored.” As a spokesperson for IC Awareness Month this year, her message is simple. She wants physicians to work together and give patients the pain care and hope that they desperately need.

“Lisa’s story is a tragic representation of what many patients have gone through. Many physicians in the USA and Canada simply don’t believe pelvic and/or bladder pain can be severe enough to require pain medication. We’ve seen patients with bleeding, damaged bladders (Hunner’s lesions) who are unable to eat, sleep or function who have pain levels equivalent to cancer pain and are sent home with nothing more than an OTC pain reliever,” said Jill Osborne, President & Founder of the Interstitial Cystitis Network.

Now these patients face a more serious obstacle. The opiate crisis and passage of the CDC Guidelines for chronic pain has resulted in tens of thousands of chronic pain patients being denied care and/or being forced off pain medication despite the fact that they are using it in low doses, successfully and without any sign of addiction. “Thirty percent of IC patients participating in a recent ICN Pain survey reported that they were cut off their medication in the past year with no warning nor a referral to a pain center” offered Ms. Osborne. With their pain now under-treated, some cannot work, are forced onto disability where they struggle to maintain relationships and function on a daily basis. Depression, anxiety and suicidal ideation is the predictable result.

During the 2017 IC Awareness Month campaign, we join clinicians and pain experts around the country who urge the CDC withdraw their opiate guidelines and rewrite them with assistance of pain management experts, pain organizations and pain patients. The CDC guidelines should be rewritten to consider the individual needs of chronic pain patients who require low doses of opiate medication to be function effectively.

An estimated 3 to 8 million women and 1 to 4 million men in the USA have symptoms of interstitial cystitis / bladder pain syndrome. Ms. Osborne said “We no longer consider IC/BPS a bladder disease unless a patient has Hunner’s lesions. New subtypes have identified pelvic floor muscle dysfunction, pudendal neuralgia and/or a systemic pain processing disorder in many patients thus explaining why bladder centric therapies are often ineffective and leave patients struggling with intense pain.” Patients who have not responded to therapy should be re-evaluated for their subtype and treated accordingly. Additional information can be found at – www.ic-network.com

Patients can participate by telling their #myicpain #mypelvicpainisreal stories!

Learn more about IC/BPS and the campaign by visiting our website – https://www.icawareness.org

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Download a PDF file of the press release here

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Additional media materials, backgrounders, expert interview opportunities, and IC fact sheets are also available.

Contact: Jill Osborne, President 
Interstitial Cystitis Network – PO Box 2159, Healdsburg CA 95448
(p) 707.538.9442 or 707.538.9446 (f) 707.538.9444 (e) jill@ic-network.com

Founded in 1995, the Interstitial Cystitis Network (https://www.ic-network.com) is a woman owned, “social advocacy” health education company dedicated to interstitial cystitis and other pelvic pain disorders. Using the internet, we create innovative solutions to the pressing problems facing patients diagnosed with urologic conditions, medical care providers who care for them and the research community seeking new treatments and cures. For the past 18 years, we have provided critical 24/7 support to patients in need, developed new educational materials, conducted vital research, provided webinars/lectures and created IC awareness campaigns, all at NO COST to the patients who visit our website.