Rare Disease Can Cause Severe Bladder Pain

Have your Hunner's Lesions been treated correctly? 

FACTS

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What are Hunner's Ulcers or Lesions?

Roughly 5 to 10% of patients diagnosed with IC/BPS have Hunner’s "ulcers" or "lesions" on their bladder wall, an area of severe inflammation that results in more severe bladder pain and symptoms. Patients with Hunner’s lesions have significantly lower bladder capacity and their biopsy results show profound inflammation NOT found in patients without Hunner’s lesions. Recent research studies have identified two possible viral infections (polyoma BK, Epstein Barr) that may play a role in the development of lesions. LEARN MORE

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How Are They Diagnosed?

For decades, Hunner's lesions were identified during a hydrodistention with cystoscopy. This "outpatient" procedure allows the doctor to closely examine the bladder wall, perform a biopsy and provide immediate treatment.  In 2017, researcher Laura Lamb (Beaumont Health) developed a new urine test that measures urinary cytokine levels. This is the first urine test that, with strong validity, identified Hunner's lesions. Ask your doctor if it is available at  their clinic. LEARN MORE

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How are Hunner's lesions treated?

With the new discussions about IC subtypes, researchers around the world agree that patients with Hunner's lesions represent a distinct patient group. Traditional bladder therapies, such as oral medications and bladder instillations, are largely ineffective. The most effective treatments are lesion specific, including: fulguration, laser therapy, steroid injection and/or LiRIS therapy (currently in clinical trials). Patient pain and discomfort may improve dramatically when lesions are treated correctly

Video

Watch this video made by Dr. Tomohiro Ueda that shows what a Hunner's lesion will look like during a hydrodistention. You can easily see why they trigger intense bladder pain. Notice the "waterfall" effect of bleeding that occurs from the lesion. This is a characteristic of Hunner's lesions. 


Five Steps Towards Healing

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#1 - Have an appropriate diagnostic workup. - If you have not responded to therapy, if your symptoms are getting worse over time, if you are struggling to find foods that you can eat without triggering with pain, it's time to ask "why" this could be happening. In many cases, patients have not had a thorough diagnostic workup or, worse, were diagnosed with lesions that were never treated correctly. LEARN MORE!


Quick Tip: Because urine testing is only available at a few research centers, most patients are diagnosed with a cystoscopy. Don't be afraid of the testing. Rather, talk with your doctor about how they will do the test AND  treat any lesions they find. The American Urology Association recommends  a "low pressure, short duration" procedure to minimize trauma to the patient, combined with lesion specific therapies. 


#2 - Diet Modification is critical. As you can see in the video above, patients with lesions have large, open wounds in their bladders that are aggravated by irritating foods. Foods high in acid and caffeine trigger the most discomfort. By modifying your diet to remove these foods, you can dramatically reduce your discomfort.


Quick Tip: The most irritating foods that should be eliminated by anyone with lesions are: Coffees (Regular & Decaf), Black Teas, Green Teas, Citrus Fruit Juices (orange, lemon, lime), Cranberry, Artificial Sugars and Vitamins which contain Vitamin C and B6. LEARN MORE


#3 - Lesion Specific Treatments – Providing treatment for Hunner's lesions is challenging for most urologists. Many patients have tried traditional oral medications (i.e. Elmiron) and/or bladder treatments (RIMSO-50, Heparin) with little reduction in their symptoms. According to the AUA, the "go to" treatments are   fulguration or laser therapy of lesion and/or steroid injection, both of which must be performed under anesthesia. As of today, we know of no natural therapies that have been effective in the treatment of lesions, perhaps due to a viral connection. 


Quick Tip: Lesion patients now have a remarkable new therapy that has healed lesions after just two weeks of treatment. Known as LiRIS, this small medical device is  inserted into the bladder for two weeks where it releases medication 24/day. Originally intended as a treatment for bladder pain, researchers were stunned to discover that lesions healed completely. The device was purchased by Allergan and is currently undergoing more clinical trials to prove its effectiveness. LEARN MORE


#4 - Pain Management – Hunner's lesions are known to cause intense, agonizing pain as the bladder fills with urine. Pain care is a compassionate must in these patients, especially if they are waiting for proper treatment and/or a hydrodistention. The American Urology Association suggests that "pain management should be integral part of the treatment approach and should be assessed at each clinical encounter for effectiveness.” Pain should be treated with a multimodal approach to therapy including diet modification, avoidance of triggers, and, if necessary, the use of opiate pain medication. LEARN MORE


Quick Tip: Whenever you experience bladder pain, your pelvic floor muscles will tighten in a guarding reflex. Sometimes, these muscles become so tight that they limit blood flow to the bladder and impair healing. Though your original problem may be lesions, it's important to keep the pelvic floor muscles relaxed and pliant. Physical therapy may be necessary. 


#5 - Get Support - You are not alone in your struggles with Hunner's ulcers or lesions. You have thousands of IC brothers and sisters who share your journey, your struggles and more. Don't suffer in silence at home alone. It's important that you get the support you deserve. The IC Network offers live support group meetings and a support forum with dedicated message boards dedicated to Hunner's Lesions where you can meet others, ask questions and gain your confidence back!  LEARN MORE


Quick Tip: The ICN streams twice monthly live support chats through our Facebook and YouTube Channels. We hope that you will join us! All questions welcome! LEARN MORE

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