Q&A with Jill Osborne MA, Founder IC Network
What is a Hunner's Lesion or Hunner's Ulcer?
A lesion or ulcer is an area of profound inflammation in the bladder wall. It can have several shapes, from round to what look like cracks in the bladder tissue.
What causes lesions?
The cause of lesions have been one of the great mysteries of IC. There are two dominant theories:
Viral Infection
Research has linked it to two potential viral infections of the bladder wall - the polyoma BK virus and the Epstein Barr virus which may help us understand why lesions haven't responded to traditional therapies, are known to recur and are, in general, somewhat challenging to treat. European IC researchers first identified the polyoma BK virus in the urine of patients with Hunner's lesions. Polyoma has long been known to occur in patients who are immune compromised and is associated with the development of hemorrhagic cystitis (aka profuse bleeding from the bladder wall. The Epstein Barr study is the first to imply that viruses normally found outside of the urinary tract can indeed be found there. Our own research on the ICN found that patients with Herpes also noticed more intense IC flares. We need much more research here.
- Eisen DP, et al. Decreased viral load and symptoms of polyomavirus associated chronic interstitial cystitis after intravesical cidofovir treatment. Clin Infect Dis 2009 May 1;48(9):e86-e88.
- Bennett S, et al. BK polyomavirus: emerging pathogen. Microbes Infect. 2012 Aug: 14(9):672-683
- Van der Aa F, et al. Polyomavirus BK–a potential new therapeutic target for painful bladder syndrome/interstitial cystitis? Med Hypotheses. 2014 Sep;83(3):317-20.
- Winter B, et al. A Case Control Study Reveals that Polyomaviruria Is Significantly Associated with Interstitial Cystitis and Vesical Ulceration. PLoS One. 2015; 10(9): e0137310.
- Jhang JF, et. al. Epstein-Barr Virus as a Potential Etiology of Persistent Bladder Inflammation in Human Interstitial Cystitis/Bladder Pain Syndrome. J Urol Sept. 2019, Vol. 200, No. 3
- Robles M, et al. Analysis of viruses present in urine from patients with interstitial cystitis. Virus Genes. Published online May 15, 2020
Uterosacral Ligament Damage
In 2021, a case study was published of a woman with severe Hunner's lesion disease who experienced an unexpected cure. During the surgical repair of the prolapse, surgeons discovered that her Cardinal/Uterosacral Ligament, which helps to hold the uterus in place, was weak and her uterus was out of position (aka posterior fornix syndrome). Remarkably, her Hunner's lesions healed completely after the surgery.
This theory was first discussed in 1938 and then again in 1996. They suggest that if these ligaments are loose, gravity may stimulate visceral plexus nerves in the bladder and other sites. These then send nerve impulses to the brain where they activate a variety of inflammatory cells (T cells, mast cells, etc.). Hunner's are "extreme manifestations" of inflammation in the bladder wall. A simple test, the insertion of a speculum into the fornix (by the cervix), can determine if the ligament is lax and, if so, surgery can reinforce and strengthen the ligament.
- Scheffler K, et al. Cure of Interstitial Cystitis and Non-Ulcerating Hunner's Ulcer by Cardinal/Uterosacral Ligament Repair. Urol Int. 2021;105(9-10):920-923
- Petros, P. IC: A Consequence of Weakened Uterosacral Ligaments Failing to Support Visceral Plexuses and Bladder Stretch Receptors, and therefor Potentially Curable. Letter to the Editor. Int Neurourol J Volume 26(4); 2022
- Goeschen K, et al. Non-Hunner's Interstitial Cystitis is Different from Hunner's Interstitial Cystitis and May Be Curable by Uterosacral Ligament Repair. Urol Int. 2022;106(7):649-657
What treatments are suggested for Hunner's lesions?
A new study found that lactoferrin (bLf) is remarkably helpful at calming the bladder wall and preventing IC flares. Thirty one patients with an active history of IC flares in the previous six months used lactoferrin (Valpalf®) for 17 weeks.(1) Out of 31 patients, 28 women experienced no IC flares after treatment while only 3 experienced just one flare. Remarkably, a significant decrease of inflammatory markers (serum IL-6 and D-dimers) was found after treatment. Most intriguing was the improvement in the appearance of the bladder wall. Both inflammation and Hunner’s ulcers appear to have resolved and their bladders apparently returned to its normal pink color: “the bladder showed a decrease of inflammation (lighter color) and the Hunner’s lesion appeared to have almost completely disappeared.” No side effects were reported. LEARN MORE
Lesions respond best to lesion specific therapies, including: fulguration, laser therapy and triamcinolone injections. Hyperbaric oxygen therapy has also been found helpful with some emerging new research about the use of platelet rich plasma. Of course, if the uterosacral ligament is involved, surgery may be necessary. If viral infection is found, antiviral therapy may be suggested. LEARN MORE
What's the most important thing that a patient can do?
Aside from working with your doctor and getting a proper diagnosis, the single most important thing for you to do is to stop drinking or eating any foods or beverages that contain high amounts of acid and caffeine, such as: coffee (Decaf & Regular), black tea, green tea, all sodas, artificial sugars, fruit juices. Learn more about the IC diet here!
Will one cup of coffee a day hurt?
YES! Your job is to create an environment in your bladder that will support healing. When you have open wounds, such as lesions, acid on that wound every day will not only prevent it from healing, it will probably make it worse. In our experience, the patients who drink just one cup in the morning often suffer the most intense and prolonged pain because their bladder simply cannot withstand that daily acid assault.
Are there holistic or alternative ways to treat lesions?
At this time, we know of no holistic method which has reduced or removed Hunner's lesions from the bladder wall. That said, anything that you can do to reduce inflammation in your body is helpful, such as reducing your consumption of sugar, eating healthy, organic foods and drinks, reducing stress can all help you become more healthy. If it is confirmed that lesions are viral in some patients, that would explain why lesions recur. Anti-virals may be a future treatment.