Interstitial cystitis (IC) is a chronic disease of the bladder that can cause scarring and stiffening of the bladder walls. Researchers1 found that only 10% of those who suffer from IC are men. In the male population, characteristic symptoms include pelvic pain, dysfunction of urination, and chronic prostatitis with pain associated with sexual activity. Women with this condition often suffer from chronic pain in the bladder, irritable bowel syndrome, and other problems.
In a population-based study, researchers found that the median age of onset was 40 years and that up to 50% would experience spontaneous remission ranging from one month to 80 months. People with IC were twice as likely to have a history of urinary tract infections.
The researchers found that the quality of life of people with IC was lower than that of people undergoing chronic dialysis for kidney failure. It is estimated that more than one million people in the United States suffer from this disease, most of whom are women. To date, there is only one drug approved by the United States Food and Drug Administration to treat IC.2
The drug Elmiron was approved for use in October 1996 as a treatment for pain and discomfort associated with the disease.3 Since it has been the cornerstone of treatment for decades, it is estimated that hundreds of thousands of people have used the drug.
Elmiron increases the risk of retinal damage
In 2018, Dr Nieraj Jain of the Emory Eye Center in Atlanta reported that six of his patients developed changes in the central area of the retina called the macula, which resulted in reading difficulties and visual changes that patients had felt in the dark.4 Six patients underwent genetic testing as part of an investigation to identify the reason for the damage, but none were found other than long-term use of Elmiron.
The macula, located in the central area of the retina, is responsible for clear central vision. After reviewing the patient’s medical history and diagnostic tests, Jain found nothing to explain the pattern of the abnormalities and therefore issued a warning that long-term use of Elmiron may have damaged his patient’s retinas.5
Afterwards, three Kaiser Permanente ophthalmologists examined 4.3 million patients in northern California and found that nearly 25% of those who took Elmiron had signs of eye damage. The researchers determined that the damage caused by the drug’s toxicity may have been disguised as other conditions, such as model dystrophy or Macular degeneration.6
Of the 4.3 million patients examined by the team, 140 had taken an average of 5,000 tablets over 15 years. Of these, 91 accepted an examination and 22 showed obvious signs of toxicity. The researchers found that the rate of toxicity and damage increased as the dose taken by the patients increased.7
Dr Robin Vora is the chair of ophthalmology at Kaiser Permanente and the study’s principal investigator. He commented on the result of treating HF using Elmiron:8
“It’s unfortunate. You have a patient with a chronic disease like interstitial cystitis, for which there is no cure and no effective treatment. They take these drugs because they are thought to have little effect. side effects and little risk, and no one thinks about it again, and year after year the number of pills they take keeps increasing.
Retinal damage may be reduced if the drug is stopped
If the damage is identified early, the researchers hope it can be alleviated when the drug is stopped.9 Vora recommends annual screening for those taking the medicine who have no symptoms and no signs of retinal toxicity.ten
It’s unclear how the retinal damage is caused by Elmiron, but Jain’s team suggests that a component of the drug may play a role. Researchers at the Cleveland Clinic suggest that Elmiron is an antagonist of fibroblast growth factor signaling pathways.
To date, no research has identified the mechanism triggering the damage. The FDA has not taken any action or issued an alert despite reports that the drug is associated retinal damage in those who use it.
There is concern that visual damage may be an unrecognized effect of IC because its presentation does not resemble any other maculopathy identified. Researchers report that in later stages, the toxicity resembles late age-related atrophic macular degeneration, which results in permanent vision loss.
Interstitial cystitis: what is it and how is it treated?
Your bladder is a hollow muscle designed to collect urine excreted by the kidneys before it signals your brain that it’s time to empty.11 This communication takes place through the pelvic nerves and creates an urge to urinate. Unfortunately, those who suffer from IC get the signals mixed and feel the need to urinate more frequently.
The condition is also called painful bladder syndrome because it triggers recurring pain attacks. People with the condition may feel the urge to urinate up to 60 times a day, including at night. Only half of people with the disorder are able to work full time. People with IC may also suffer from migraines, irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome and allergies.
The exact mechanism of the disease is unknown, but biopsies indicated abnormalities in the bladder wall. The focus of research on the trigger focuses on the inner layer of the bladder wall that can allow toxins to escape or substances that block the normal growth of cells lining the bladder.
Others have speculated that a viral agent could trigger an infection or that an autoimmune disease could be responsible. Since the trigger is unknown, the diagnosis is made excluding other similar conditions. Testing and treatment is usually done by a urologist or gynecologist to rule out infections, bladder stones, kidney disease, multiple sclerosis, and sexually transmitted diseases, among other disorders.
Management of the disease often begins with conservative measures. The most commonly used drug was Elmiron, the only drug approved specifically for the treatment of IC. It may take several months to feel an effect, and the effect may be modest. Other drugs used include pain relievers, tricyclic antidepressants to help relax the bladder, and antihistamines to block the release of mast cells.
Trigger Foods and the IC Diet
In addition to medication, management may also include diet modification, stress reduction, and therapy.12 The IC network13 recommends identifying foods that trigger your symptoms and irritate your bladder, as changing your diet is a critical first step in managing your condition and helping protect your bladder.
It can take up to six months to develop a personalized list of foods that will trigger your symptoms. However, the IC network offers a starting list of three types of food which are:
- Well tolerated by most
- Usually harmless but may irritate some bladders
- Should be avoided as they cause discomfort in many
Some of the most troublesome foods include any type of beverage containing caffeine, alcohol, citrus fruits, spicy foods, and artificial sweeteners. The least troublesome ones seem to be mostly fruits and vegetables, water, milk, meat, and eggs.
Options for the drug-free management of interstitial cystitis
The Interstitial Cystitis Association14 recommends that those in pain be proactive and plan ahead. The sooner a flare is treated, the sooner it can be resolved. They recommend self-help techniques to reduce bladder irritation, such as learning self-hypnosis, stress reduction techniques, and relaxation techniques.
Some flare-ups are triggered by wearing restrictive clothing such as tights, tight jeans, or slimming clothes. Some people experience relief from simple strategies at home, including:
- Reduce urine concentration by drinking more water
- Using a hot compress or a cold compress in the perineum area, experiment to see what works best
- Take a warm sitz bath with or without Epsom salt
- Relax your pelvic muscles by placing your knees against your chest or lying on your back with your legs apart
- If you are not on a low salt diet, a glass of water mixed with 1 teaspoon of baking soda to help reduce the burning sensation
If you think you have a urinary tract infection, see a doctor quickly because an infection can start a flare-up and can be difficult to resolve if not treated immediately. An animal study found that melatonin improved symptoms and reduced histological damage in the bladder.15 Another preliminary study in 17 women and 5 men found oral supplementation with quercetin provided a significant improvement.16
In addition to the health problems listed above, people with IC can also suffer from pelvic floor dysfunction. Exercises with a physical therapist focus on strengthening and relaxing the core and can help relieve pain as the pain tends to tighten the pelvic muscles and increase discomfort during urination.17
Reducing stress and muscle tension often helps relieve pain and discomfort, including in people with IC. Emotional Freedom Techniques (EFT) are quite effective and can be used in private or in public without fear of side effects. In two of my previous articles, I wrote about EFT and the techniques you can use to reduce your discomfort:
- Crying can help relieve stress, but for optimal health you need better tools for relieving stress.
- Have you tried Emotional Freedom Techniques (EFT)?