Interstitial cystitis (also known as Bladder Pain Syndrome) is a chronic condition involving bladder pain that you cannot attribute to another known cause. Interstitial cystitis symptoms include pain in the bladder or urethra, a frequent need to urinate, and sometimes pain throughout the pelvic floor.
Interstitial Cystitis or Bladder Pain Syndrome most commonly affects women but can also affect men. Its causes are not fully understood, and there may be multiple causes or conditions that lead to interstitial cystitis symptoms.
A Little IC Trivia:
While the term “cystitis” implies inflammation of the bladder, there isn't evidence that inflammation is always a factor in this condition. This led to the term “Bladder Pain Syndrome.” Despite its misnomer, the name Interstitial Cystitis is still commonly used, partly because there has been so much work done to increase its recognition in the medical community, which historically tends to dismiss conditions involving pain in the female experience. Throughout this article, we will use the term “interstitial cystitis.”
Who Is at Risk for Interstitial Cystitis?
Interstitial cystitis is considered an uncommon condition, but may be more common than we think. Many cases likely go unrecognized because of its confusing symptom presentation making it difficult to diagnose. Interstitial cystitis most commonly affects women in their 30s and beyond. Many people diagnosed with interstitial cystitis also experience other chronic pain syndromes, such as irritable bowel syndrome, fibromyalgia, and vulvodynia.
What Does Interstitial Cystitis Feel Like?
The most common symptoms of interstitial cystitis include:
- Chronic pain felt around the bladder or urethra, or both
- Chronic pain in the pelvis (often felt in front of the anus)
- Frequent need to urinate, even if only small amounts
- Pain that intensifies as the bladder fills and relieves after peeing
Bladder pain can range from moderate pressure or tenderness to severe pain. You usually feel it in the urethra or lower pelvis, but some people also experience pain in the low back or abdomen, particularly with a full bladder. It is also common for people with interstitial cystitis to experience more severe tenderness or sensitivity in nearby areas, like the hips, abdomen, genitals, or pelvic floor.
Why Is Diagnosing Interstitial Cystitis So Tricky?
Interstitial cystitis shares symptoms with several other illnesses, and your doctor will likely perform several tests to rule out other conditions or infections before diagnosing. Urinary tract infections (UTIs) or other infections, overactive bladder syndrome, cancers or benign growths, pain syndromes, endometriosis, and some neurological conditions can also result in bladder pain and similar symptoms.
Living with Interstitial Cystitis
The chronic pain, discomfort, urinary frequency, and fatigue (some folks need to empty their bladders several times a night) can lead to a decreased quality of life, interrupting time spent at home, at work, or enjoying hobbies.
Pain can vary day-to-day, and some people may experience symptom-free spans, with periods of worse symptoms commonly called “flares.”
Interstitial Cystitis and Sex
It's no surprise: interstitial cystitis can place extra stress on sexual or intimate relationships. Pain and a frequent need to pee can make sex or sexual touch feel impossible! It may take time, but as you discover the treatments and timing that work best for you, sexual intimacy can be possible. Open and supportive conversations with partners are always important, especially in relationships affected by interstitial cystitis. Communicate how you are feeling, what works, and what doesn't feel right.
What Causes Interstitial Cystitis?
Researchers are still seeking the root cause behind interstitial cystitis. It's possible that there may be several completely different conditions that all lead to the symptoms we call interstitial cystitis.
The root cause of interstitial cystitis is not fully understood, and many patients report no knowledge of a single trigger or event that lead to first signs and symptoms. In some cases, a bad UTI or physical trauma to the area (like surgery or a rough fall) could be a suspect.
Other possible causes include damage to the bladder's protective inner lining, leaving nearby nerve and muscle tissue more vulnerable to irritants. Changes in the nervous system could also trigger increased pain perception by merely sending some nerves into overdrive. Genes may also play a role in one's risk for interstitial cystitis.
What Triggers Interstitial Cystitis Flares?
An essential step in managing IC is recognizing the patterns that can help prevent flares. Depending on the individual, certain foods, activities, and even stress and hormones can worsen or set off symptoms.
Foods That May Make Interstitial Cystitis Worse
In general, acidic, spicy, caffeinated, or carbonated foods are common triggers for interstitial cystitis symptoms. Foods to watch out for include:
- Citrus fruits
- Vitamin C supplements
- Coffee and Tea
- Spicy foods
- Artificial sweeteners
Activities That May Increase Interstitial Cystitis Symptoms
Specific activities that put pressure or friction on the pelvis can trigger flares in some people. These include sexual activity, biking, tight clothing, driving, or long periods of sitting.
Hormonal Changes That May Affect Interstitial Cystitis
Your body is sensitive to hormonal changes in ways you often can't perceive. For menstruating women, symptoms may worsen at certain times in their cycle. For some, this occurs around the time of their period. For others, it can happen when either estrogen or progesterone are at their highest (just before ovulation or during the luteal phase.
Learn more about balancing your hormones with the free hormone starter kit.
How Long Does Interstitial Cystitis Last? Can IC Go Away?
There's no clear answer to this question. Clinically, I have helped women reverse their IC symptoms and put it into remission. For others, we have identified their triggers, which has resolved symptoms, but also have a symptom management plan in place for when flares arise again.
According to the American Urological Association, you have interstitial cystitis if this pain has continued for more than six weeks, and you cannot attribute it to another condition or infection.
Because the causes of interstitial cystitis can be varied, the duration and severity of the condition also vary. For some folks, interstitial cystitis can resolve on its own. For others, it can be a lifelong condition. Many people experience on and off symptoms, where they may go longer spans without experiencing a flare.
What Happens if Interstitial Cystitis Goes Untreated?
The longer a flare is left untreated, the longer it may take for remedies to kick in and relieve the pain.
This is the hard part: Interstitial cystitis, especially unmanaged, can mess with your quality of life. Chronic physical pain is no joke and carries a severe emotional and mental burden. Frequent discomfort and need to pee can cause difficulty sleeping, focusing on work, leaving home, enjoying socializing, or even just completing daily tasks.
Chronic pain also leads to depression and emotional stress. If you or someone you love is struggling to cope with chronic pain, seek help from a mental health professional. If you have any thoughts of self-harm, professionals are always available for immediate help through the National Suicide Prevention Lifeline number at 1-800-273-8255.
Treatments for Interstitial Cystitis
Because there are so many causes, the same treatments might not work for everyone. People with interstitial cystitis should expect to try a few different remedies or combinations of treatments before finding what works best for them. Because there is no single cause of the sensitivity behind interstitial cystitis, the treatment goal is often to identify triggers or causes, alleviate pain, and help people return to a better quality of life.
Next, we'll talk through some well-known treatments and others that are emerging and promising for treating IC. This list can be a great way to start a conversation about treatment with your healthcare provider so that together you can find the best path for you.
Identifying Triggers for Bladder Pain Flares
The best way to manage pain is to prevent it. Your experience is your own best tool, and identifying the foods, actions, or other triggers that set off an interstitial cystitis flare can be extremely useful in understanding the condition. While interstitial cystitis can be frustrating, taking the time to track symptoms can give you priceless information.
Consider keeping a detailed diary of your symptoms. Take note of your diet, water intake, when you pee, activities like sex, long drives, or biking, and (if you are a person who menstruates) where you are in your menstrual cycle. This diary may help you to realize patterns between symptoms and help identify the diet and lifestyle choices you can control.
Elimination Diet for Interstitial Cystitis
Another approach is called an elimination diet. Try eliminating the foods listed in the trigger section above, as well as any other foods that you suspect may be irritating your body. Allow your body to reset for at least two to three weeks without these foods, then slowly introduce them back to your diet one-by-one. As you try foods again, take note of how your body responds to each change, and give at least three days between re-introductions of different foods.
Common Treatments for Interstitial Cystitis
A doctor can help recommend oral medications to treat pain from interstitial cystitis.
- Over-the counter pain relievers. You can approach pain with anti-inflammatory pain relievers such as ibuprofen or naproxen sodium.
- Antihistamines. Antihistamines may help to reduce the frequency and urgency of urination.
- Elmiron®. Elmiron is an FDA-approved drug designed to protect and repair the bladder lining. While its effects take time to kick in, it effectively reduces pain and symptoms in people with interstitial cystitis.
- Instillation. Your doctor may provide an “instillation” or medicine that goes directly into the bladder through a catheter. These medications can be used regularly to repair damage to the bladder wall or for urgent pain relief during bad flares.
Those who suffer from interstitial cystitis often have tightness or sensitivity in the surrounding muscles. A pelvic floor physical therapy specialist may help identify restrictive motions, trigger points, or tightness around the pelvis, groin, abdomen, low back, butt, and thighs, and is trained to help release tightness and tenderness in those muscles and soft tissues.
Studies show that pelvic physical therapy could help relieve pain and frequency in interstitial cystitis patients by relaxing the resting tension in muscles around the pelvic floor.
Biofeedback in Physical Therapy
Some therapists recommend using biofeedback tools to treat interstitial cystitis symptoms by helping patients connect to their pelvic floor muscles. Probes in the vagina, anus, or the skin around the pelvis can record tension in these muscles and display it on a computer screen. The ability to see this tension changing in real-time can be very valuable in helping people observe their tightness and learn how to consciously relax their pelvic floor muscles.
Frequent trips to the bathroom can be a real frustration for those with interstitial cystitis. Bladder training aims to increase the intervals between urination and help people regain some control of their time.
Working under the guidance of a health provider can help you be successful with this method. It may be beneficial to combine this with additional therapies. For example, if you currently feel the need to pee every 30 minutes, try extending your intervals to 45 minutes, and continuing that goal until it feels comfortable. Week by week, continue increasing that interval by 15 minutes. The goal is to train your body to tolerate peeing on your schedule, not every time you feel the urge.
If you’re in a flare or experiencing pain, then it may not be a good time for this therapy.
Some people with interstitial cystitis find an improvement in pain following a procedure called hydrodistention, where a doctor uses liquid to stretch the bladder to capacity, usually with anesthetics. Clinical standards for this treatment are still developing, and it is essential not to risk damaging the bladder with excessive pressure or duration. Work with someone who specializes in this and be sure to ask about all the potential risks and side effects associated with it.
Electrical Nerve Stimulation
With nerve therapy, small electrical pulses delivered near the sacral nerve may help reduce symptoms by interrupting the pain signals delivered to the brain while also increasing blood flow to the area to help strengthen muscles. This can be performed with a “TENS” device (transcutaneous electrical nerve stimulation) as needed or by surgically implanting a more permanent sacral nerve stimulator.
Other surgeries are available to help relieve symptoms, but this approach is only recommended in extreme cases for specific patients, once all other possible treatments have been exhausted. Surgical options include urinary diversion to bypass the bladder, or cystectomy, the removal of the bladder.
Natural Treatments for Interstitial Cystitis
Many of my patients have benefited from natural therapies alone or a combination of conventional and holistic therapies. The good news about natural therapies is that they can be combined with other therapies to help you get relief.
Hot and Cold Therapy
You can use simple heat or cold to potentially relieve pain from interstitial cystitis flares. Depending on the source of your pain, try applying either a hot or cold pack to the abdomen or the perineum (the area between the anus and vulva).
Some people benefit from alternating hot and cold therapy. Applying heat for no more than 20 minutes and then following up with cold as tolerated is one approach that may be helpful.
The ancient practice of acupuncture could relieve pain and increase blood flow as treatments for many different conditions. Regular sessions with a Licensed Acupuncturist (LAc) may help relieve symptoms from interstitial cystitis.
Balancing stress with any chronic pain condition is a vital step towards taking control of your life and actively managing symptoms and treatments. Finding ways to maintain your mental health will help you have the energy to problem-solve triggers, manage diet, stay active, and cope with symptoms when they arise.
Herbal Remedies for Interstitial Cystitis
- Marshmallow Root: Marshmallow root acts similarly to the drug Elmiron by gently coating and protecting the bladder wall. Try it as a tea or in a capsule. Talk to a doctor if you are using other medications, as it can reduce absorption.
- Aloe Vera: Aloe vera capsules are another natural option to help soothe bladder pain and reduce urinary frequency. Do not take aloe vera during pregnancy.
- Kava: Kava is a root used to make a bitter, relaxing tea. Frankly, it tastes like dirt, but it's happy dirt. Kavalactones in Kava help reduce anxiety, relax muscles, and decrease pain. Sipping on Kava tea could also make your tongue and mouth a little numb, so don’t be alarmed if that’s what you experience!
A practitioner with a background in herbal medicines and natural remedies can also help recommend combinations of herbs to treat interstitial cystitis symptoms. An experienced, qualified practitioner will assess your individual constitution and recommend herb blends tailored to you.
Studies show mixed results, but in some trials, L-Arginine supplements decreased pain from interstitial cystitis. L-Arginine could help the body increase Nitric Oxide production, which helps relax smooth muscles, release hormones, and regulate bacteria.
For many people, acidic foods, spicy foods, or other foods listed above can lead to flares of interstitial cystitis symptoms. A 2001 study showed that supplementing with Calcium Glycerophosphate before eating problematic foods could significantly reduce their negative impact on symptoms. This could act as a remedy to have on hand for situations where you accidentally eat something on your irritant list.
Does Drinking Water Help Interstitial Cystitis?
There's no doubt that a constant need to pee is inconvenient, not to mention painful when it comes to interstitial cystitis. While it could seem tempting to reduce your water intake, maintaining healthy hydration is essential for interstitial cystitis – and all aspects of health. Sipping a steady intake of water throughout the day, rather than large quantities at once, could help calm aggravating symptoms. Upping water intake can also help dilute the urine, reducing symptoms caused by something you ate.
Living with Interstitial Cystitis, or Bladder Pain Syndrome
If you live with interstitial cystitis, it is important to learn to listen to your body and understand your unique triggers, symptoms, and treatments. You are your best advocate and the most qualified to observe and communicate your own feelings. Finding the perfect treatments that work for your unique body may take time, but I hope this article can be a helpful guide in your journey.
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