by Dr. Bill Rawls
Early in my career practicing OBGYN, I became aware of a subset of patients who suffered from interstitial cystitis (IC), sometimes referred to as painful bladder syndrome (PBS). People with IC feel like they have a bladder infection that never goes away.
They describe symptoms like debilitating pain and intense urinary frequency and urgency, which doesn’t respond to antibiotics, and urine cultures are typically negative. Because IC patients are often treated repeatedly with antibiotics, however, they may end up having chronic urinary tract infections with antibiotic-resistant bacteria induced by taking the antibiotics.
IC can affect anyone, but current estimates suggest it’s much more common than previously thought. Here, we’ll take a closer look at its prevalence, as well as its connection to chronic illness and solutions to help you feel better.
The Prevalence of IC
Between 2.7% to 6.5% of women and approximately 2.3% to 4.6% of men in the United States have symptoms consistent with IC. The condition occurs more often in women than men at a 5:1 ratio, and it can happen in children, too. The two most recognized subtypes of IC include:
- Non-ulcerative: Approximately 90% of patients have a bladder lining that appears normal despite having significant symptoms.
- Ulcerative or Hunner’s lesions: 5% to 10% of IC patients will have red, bleeding ulcers or lesions on their bladder wall.
Some individuals may develop “end-stage” IC, a severe form of the disease marked by intense pain, hardening of the bladder, and a reduced capacity to hold urine. Currently, IC is considered idiopathic, meaning its cause remains unknown.
It’s notoriously difficult to treat, but we know it often overlaps with other chronic diseases, including Lyme disease, fibromyalgia, mast cell activation syndrome (MCAS), irritable bowel syndrome (IBS), and more. If you suspect you have IC and an overlapping chronic illness, here’s what you should know to find some much-needed relief.
During my years of practice, I developed special compassion for patients with IC because no other physicians wanted to see them. For years, I searched for solutions, but my efforts were focused primarily on relieving symptoms — gains were minimal and often short-lasting.
Like Lyme disease testing, there are no tests to diagnose IC accurately. Therefore, IC is a diagnosis of exclusion using patients’ health histories, symptom checklists, and other supporting tests, procedures, and labs. In short, doctors try to rule out other treatable bladder conditions before making a diagnosis of IC. (Sound oddly familiar?)
Symptoms of Interstitial Cystitis include:
IC symptoms vary from person to person and in severity. Note that one person may have most of the symptoms on this list, while another may have just one or two.
- Urinary frequency and urgency
- Nocturia (severe urinary urgency at nighttime)
- Bladder pain with a full bladder
- Difficulty emptying the bladder
- Pain in the perineum and urethra
- Chronic pelvic pain
- Low back pain or leg pain
- Vulvar/vaginal pain (female)
- Testicular pain (male)
- Painful sex
- Worsening bladder pain when certain food or drinks are consumed
The Interstitial Cystitis — Lyme Connection
Because of my own journey with chronic Lyme disease, my professional interests shifted focus to that area of study. Consequently, the more Lyme patients I speak with, the more I’ve encountered those who suffer from bladder pain and symptoms consistent with IC. I’m also hearing from men with chronic Lyme who have bladder symptoms and chronic prostatitis (chronic infection of the prostate gland with similar symptoms to IC).
And when I remember back to patients from the past, those coping with IC frequently had chronic pain in other areas of the body. Many of them, in fact, also had fatigue and symptoms common to chronic Lyme disease and fibromyalgia — which got my wheels turning. This symptomatic overlap made me believe there had to be a microbial connection.
Borrelia, the microbe commonly associated with Lyme disease, could be a culprit. Previous research has found Borrelia in bladder biopsies and in the urine of people diagnosed with Lyme. The study didn’t show an active infection was present, but perhaps a past infection was the spark that set off an array of bladder symptoms.
Additionally, people with Bartonella, a common coinfection, have been known to experience symptoms affecting the urinary system, such as bladder irritation and urinary frequency.
However, I would lay odds on the often overlooked Mycoplasma and a closely related bacterium called Ureaplasma as chief instigators of bladder discomfort. About 75% of people with chronic Lyme disease have been found to harbor at least one species of Mycoplasma.
And it fits: Mycoplasma and Ureaplasma are the smallest of all bacteria. They’re obligate intracellular microbes — which means they must live inside cells of a host to survive. They typically infect the linings of the body — the lungs, intestines, joints, and urinary tract. Different species of Mycoplasma and Ureaplasma prefer certain areas of the body, but any species of these microbes can wind up in other places in the body. The most common bacterial species found in the urinary and reproductive tracts are Ureaplasma urealyticum and Mycoplasma hominis.
Typically, these microbes are spread by sexual activity, but they can be acquired by other routes, too. For example, Mycoplasma pneumoniae, a frequent cause of respiratory infections, can also make its way into the urinary tract.
Mycoplasma and Ureaplasma are particularly difficult to culture. Thirty years ago, when I first started practicing medicine, routine testing for Mycoplasma and Ureaplasma wasn’t even available. That’s starting to change: DNA testing has become more reliable, and in-the-know providers are testing for these microbes more routinely with some success. They’re beginning to find these microbes — not just in symptomatic patients but also commonly in people with no symptoms.
This fact — that Mycoplasma and Ureaplasma are commonly found in the urinary tracts of people who don’t have symptoms — suggests that they’re actually ubiquitous microbes. Some experts have even defined them as normal flora. This is why many experts discount the connection between Mycoplasma, Ureaplasma, and bladder problems.
It presents the same kind of conundrum found in chronic Lyme disease: Why do some people with these microbes develop symptoms, and others don’t? What I didn’t know 30 years ago that I learned from understanding chronic Lyme disease is that the immune system is the key.
Like other systems of the body, the urinary tract has a microbiome consisting of beneficial and pathogenic microorganisms. If people have robust immune function, they can harbor these microbes without symptoms. People become chronically ill when a perfect storm of factors comes together to disrupt immune system functions, which allows the harmful microbes to multiply.
Therefore, the solution to reducing symptoms and feeling better must go beyond killing or suppressing microbes — restoring immune system functions to optimal levels can go a long way in overcoming this illness.
Conventional Treatment Approaches to IC
For the treatment of IC, there’s one FDA-approved drug called pentosan polysulfate sodium, or Elmiron, which was approved back in 1996. Unfortunately, Elmiron is only helpful in approximately 38% to 61% of patients, and it can take several months before patients notice improvements. It can also come with a host of unwanted side effects such as digestive distress, hair loss, itching, or skin rash.
But if your symptoms are due to a microbe like Borrelia, Bartonella, Mycoplasma, or Ureaplasma, there’s a good chance pentosan polysulfate sodium won’t do a whole lot for you because it’s failing to address the underlying issue of a hampered immune system.
In addition to pentosan polysulfate sodium, other conventional treatments for IC include:
The pain associated with IC can be debilitating. Medications like over-the-counter aspirin or ibuprofen may be helpful to some people. Older tricyclic antidepressants, such as amitriptyline, can be useful for mitigating pain and relaxing the bladder, and some patients find that antihistamines quell the bothersome symptoms of urinary urgency and frequency.
Additionally, some people experience relief from urinary medications like Uribel (a combination of medications that relaxes the bladder and contains some antimicrobial properties) or Detrol LA (an anticholinergic drug for an overactive bladder). Medications are highly variable among IC patients, so what works for one person may not work for another.
IC and Antibiotics
Note that antibiotics aren’t considered a treatment for IC, and the condition rarely improves as a result of taking them. Additionally, if your IC symptoms are due to Mycoplasma and Ureaplasma, they too respond poorly to synthetic antibiotics. Why?
It’s the same reason that other microbes associated with chronic Lyme disease and coinfections respond poorly to antibiotics: They live inside cells, grow very slowly, and occur in low concentrations in tissues. In addition, microorganisms like Mycoplasma and Ureaplasma don’t have a typical cell wall, which is what many antibiotics attack to inhibit bacterial growth.
Monitoring Diet for Potential Triggers
Certain foods and beverages can act as triggers for bladder inflammation and pain. Though everyone is different, some of the more common offenders include:
- Green tea
- Citrus and citrus juices
- Cranberry juice
- Acid foods
- Spicy cuisine
- Foods that contain artificial preservatives and sweeteners
And while this list may seem overwhelming, the good news is that most vegetables, low-sugar fruits, healthy fats, and meats are bladder-friendly. For a more comprehensive look at the IC Diet, visit the Interstitial Cystitis Association (ICA) or the IC Network for more information.
During bladder instillations, your doctor delivers a cocktail of medications directly into your bladder via a sterile catheter, and then asks you to retain the contents of your bladder for a specific amount of time. Medications typically include DMSO, sodium hyaluronate, heparin, lidocaine, sodium bicarbonate, and pentosan. The treatment aims to reduce bladder pain, urinary frequency, and urgency, and the procedure may be repeated weekly for several months.
Pelvic Floor Physical Therapy
Many IC patients experience dysfunction in their pelvic floor, a network of connective tissue, muscles, and ligaments that support the pelvic organs, such as the bladder, the uterus, the vagina, and the colon. During pelvic floor physical therapy, specially trained physical therapists work to reduce pelvic pain, release muscle tension, and improve strength and tone in areas of weakness or imbalance.
Natural Remedies and Relief for Interstitial Cystitis
Some conventional treatments, including monitoring your diet and pelvic floor physical therapy, work in conjunction with natural remedies to relieve the symptoms of IC. A natural approach can also help you target any microbes at play.
To control the microbes, you must suppress them for a very long time and boost immune function at the same time. Remember that synthetic antibiotics will most likely be ineffective and highly disruptive to normal flora.
For many people, herbal therapy provides a more practical solution. Herbs suppress these stealth microbes but do not disrupt normal flora, so they can be used for extended periods (months to years) without concern. Herbs also reduce inflammation and enhance immune functions — especially natural killer (NK) cells important for eliminating cells infected with microbes.
And because many herbs have antimicrobial properties, there’s an assortment to try if an herb causes your bladder to flare up or you don’t find it beneficial. (A reminder that anything you consume orally — including herbs — can act as a trigger for IC, so it’s a good idea to start with low doses and slowly increase levels.)
Here are some good herbs to start with:
- Cat’s claw, Japanese knotweed, andrographis, garlic, and berberine: These herbs are my preference for restoring immune function, balancing the microbiome, and suppressing a range of pathogens. I consider them a foundational part of any herbal protocol for chronic Lyme or coinfections.
- Anamu (Petiveria alliacea): This is my favorite herb for Mycoplasma and Ureaplasma because the phytochemicals of the herb are concentrated in both the intestinal tract and urinary tract for maximum deliverability.
I recommend beginning slowly and working your way up to 1200 mg (two 600 mg capsules) twice daily. Generally, it is well-tolerated, with the only noticeable side effect being a mild odor to urine and stool. The herb comes from South America but is readily available from many manufacturers online.
- Mullaca (Physalis angulata): Another South American herb, it’s also good for Mycoplasma species and can be taken as a complement to anamu. It can be found online as a loose powder (add it to smoothies, or make your own capsules) or a tincture.
- Chinese skullcap, Isatis, Houttuynia, Sida acuta, and Cordyceps: These herbs have also shown activity against Mycoplasma and help combat Lyme and coinfections.
- CBD oil: I also recommend adding cannabidiol oil (CBD) from hemp to ease pain. It works in part by blocking pain-conducting nerve impulses, which reduces the perception of pain. CBD also increases dopamine, a neurotransmitter that both counteracts pain and reduces inflammation to support healing. Most people benefit from 15-30 mg of CBD, one to three times a day.
- Topical essential oils: Individuals are reporting symptomatic relief of IC symptoms using essential oils rubbed into the pubic area several times a day. I have been recommending a formula of tea tree oil and frankincense oil mixed in a ratio of 1:4 in a carrier oil, such as jojoba or grapeseed oil. Sandalwood is an excellent essential oil for bladder and urethral pain as well.
- Quercetin: People with IC may also benefit from herbs with natural antihistamine properties that reduce a key inflammatory chemical in the body that’s involved in allergic reactions and can contribute to recurring bladder irritation. Quercetin, a pigment, is one such natural antihistamine; it can be taken in supplement form or found in bladder-friendly foods such as broccoli, leafy greens, olive oil, and blueberries.
Of course, this isn’t an exhaustive list of options, but bear in mind, overcoming stealth microbes in the urinary tract mirrors recovery from chronic Lyme disease or any other condition associated with chronic immune dysfunction. Focusing on a specific microbe alone isn’t enough; immune system functions must be restored.
Finding your healing path is often a process of trial and error, but primary antimicrobial herbs and immune-modulating herbs, complemented by cultivating a healing environment within the body and reducing your dietary triggers, are your best allies in the fight against interstitial cystitis and Lyme disease.
Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.
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