by Dr. Bill Rawls
Early in my career practicing OBGYN, I became aware of a subset of patients who suffered from a condition called interstitial cystitis (IC), sometimes referred to as painful bladder syndrome (PBS). People with interstitial cystitis feel like they have a bladder infection that never goes away.
They describe symptoms like debilitating pain and intense urinary frequency and urgency, which don’t respond to antibiotics, and urine cultures are typically negative. Because IC patients are often treated repeatedly with antibiotics, however, they frequently end up having chronic urinary tract infections with antibiotic-resistant bacteria induced by taking the antibiotics.
The condition occurs more often in women than men at a 5:1 ratio, and it can occur 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.
Interstitial cystitis is considered idiopathic — meaning the cause is unknown. It is notoriously difficult to treat, but we know it often overlaps with other chronic diseases, including fibromyalgia, irritable bowel syndrome (IBS), Lyme disease, and mast cell activation syndrome (MCAS). If you suspect you have IC and/or an overlapping chronic illness, here’s what you should know to find some much-needed relief.
Diagnosing Interstitial Cystitis
I developed a 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 short-lasting.
Similar to Lyme disease testing methods, there are no tests to accurately diagnosis IC. Therefore, IC is a diagnosis of exclusion using patients’ health histories, symptom checklists, and other supporting tests, procedures, and labs. (Sound oddly familiar?)
The Interstitial Cystitis — Lyme Connection
With my professional interests now focused on chronic Lyme disease, I’m hearing from more chronic Lyme patients 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).
And, interestingly, remembering back to patients from the past, sufferers of IC frequently had chronic pain in other areas of the body. Many of them, in fact, also had fatigue and symptoms common to fibromyalgia and chronic Lyme disease.
However, I would lay odds on mycoplasma and a closely related bacterium called ureaplasma. About 75% of chronic Lyme disease sufferers have been found to harbor at least one species of mycoplasma.
It fits. Mycoplasma and ureaplasma are the smallest of all bacteria. They are obligate intracellular microbes — which means they must live inside cells of a host to survive. They typically infect linings of the body — linings of lungs, intestines, joints, and the urinary tract.
Different species of mycoplasma and ureaplasma prefer certain areas of the body, but any species of these microbes can be found in different places the body. The most common species found in the urinary and reproductive tract are Ureaplasma urealyticum and Mycoplasma hominis.
These microbes typically spread sexually, but they can be acquired by other routes. Mycoplasma pneumoniae, a frequent cause of respiratory infections, can also be found in the urinary tract.
Mycoplasma and ureaplasma are notoriously difficult to culture. Twenty-five years ago, when I first started practicing medicine, routine testing for mycoplasma and ureaplasma was not available. That’s starting to change: DNA testing has become more reliable, and providers are testing for these microbes more routinely. And they are finding 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 are actually very common microbes. Some experts have even defined them as a 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 do not? What I didn’t know 25 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 and not have symptoms. People become chronically ill only when a perfect storm of factors comes together to disrupt immune function, which allows the harmful microbes to flourish.
Therefore the solution must go beyond killing or suppressing microbes — you must restore immune system functions to optimal levels to overcome this illness.
Conventional Approaches to Treating Interstitial Cystitis
For the treatment of IC symptoms, there’s one FDA-approved drug called pentosan polysulfate sodium, or Elmiron. Unfortunately, Elmiron is only helpful in approximately 38% to 61% of patients, and it can come with a host of unwanted side effects such as digestive distress, hair loss, and itching or skin rash. If your symptoms are due to mycoplasma and ureaplasma, there’s a good chance pentosan polysulfate sodium won’t do a whole lot for you.
In addition to pentosan polysulfate sodium, other conventional treatments for IC include:
- Other medications: The pain associated with IC can be debilitating. Medications like over-the-counter aspirin or ibuprofen can be helpful to some people. Older tricyclic antidepressants, such as amitriptyline, can be useful for mitigating pain and relaxing the bladder. Additionally, some patients will find that antihistamines quell the bothersome symptoms of urinary urgency and frequency.
- 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 coffee, green tea, alcohol, citrus and citrus juices, cranberry juice, acid foods, spicy cuisine, and foods that contain artificial preservatives and sweeteners.
But 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 Interstitial Cystitis and Diet from the Interstitial Cystitis Association (ICA).
- Bladder instillations: During a bladder instillation, 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 is aimed at reducing bladder pain and 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 where there are areas of weakness or imbalance.
Note that antibiotics aren’t considered a treatment for IC, and the condition rarely improves as the 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 respond poorly to antibiotics: Mycoplasma and ureaplasma live inside cells, grow very slowly, and occur in low concentrations in tissues. In addition, mycoplasma and ureaplasma do not have a typical cell wall and other characteristics common to bacteria.
Natural Remedies and Relief for Interstitial Cystitis
Some conventional treatments, including monitoring your diet and pelvic floor physical therapy, will 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.
Herbs provide a more practical solution. Herbs suppress these stealth types of microbes, but do not disrupt normal flora, so they can be used for extended periods of time (months to years) without concern. Herbs also reduce inflammation and boost immune functions — especially natural killer cells important for eliminating cells infected with microbes.
And because many herbs have antimicrobial properties, there’s an assortment to try in the event that an herb causes your bladder to flares up. (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:
- 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 the 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: In his book defining therapy for mycoplasma, Stephen Buhner recommends these herbs for a primary herbal protocol. I consider cordyceps and Chinese skullcap to be part of a core herbal protocol for chronic Lyme in general.
- CBD oil: Recently, I’ve also been recommending adding cannabidiol oil (CBD) from hemp to ease pain. It works it 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 with the use of 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 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: Lastly, 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.
The recovery protocol for overcoming mycoplasma and ureaplasma 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 is not enough; immune system function must be restored.
Primary antimicrobial herbs and immune-modulating herbs, complemented by cultivation of a healing environment within the body and reducing your dietary triggers, are your best allies in the fight against interstitial cystitis and Lyme disease.