Understanding Interstitial Cystitis Flares
Interstitial cystitis patients often struggle with “IC flares,” a sudden and dramatic worsening of their bladder symptoms. Lasting from hours to weeks, IC flares can be unpredictable, disruptive and difficult to manage for both newly diagnosed and veteran IC patients. Over the years, we discovered that a number of events can trigger an IC flare. Many IC patients quickly learn the subtle, yet distinct differences in the onset, duration and symptoms of flares depending upon the trigger. Food related flares, for example, can be felt within minutes or hours of eating a risk food and may last a day or longer. A sex induced flare may occur 24-48 hours after intimacy and last for several days. Hormone induced flares, such as the flare which may occur during ovulation, may last just a few hours. The good news, however, is that many IC flares are preventable and are often predictable.
Guide to Managing IC Flares (2011)
The ICN Guide to Managing Flares will give you practical, easy tips that you can use to manage and prevent the most common IC flares!
(1) Hour by hour customized "rescue plans" that you can use to control your symptoms and, we hope, reduce the length of your flares.
(2) In Sickness and In Health: the Critical Role Spouses Play
(3) Decreasing IC Pain Naturally
(4) Comfort Foods During Flares
If you're uncertain about what a flare is or what you can do to manage and prevent them, this guide is a must read!!!
What does an IC flare feel like?
Depending upon the triggering event, an IC patient may experience a variety of symptoms during their flare.
- Frequency: During flares, patients can experience urinary frequency, especially at night. Mild IC patients may urinate 11 or more times in a 24-hour period, while more severe IC patients urinate 40 or more times a day.
- Urgency: Some IC patients struggle with a sudden need to urinate and/or a sensation of constant pressure to urinate.
- Pain: Flares can provoke mild to severe pain. During most IC flares, the pain worsens as the bladder fills with urine and may be relieved after urination. Bladder pain is most commonly felt in the subrapubic region, directly above the pubic bone. However, it’s not unusual for pain to radiate into the lower back, upper legs, perineum, rectum and/or reproductive tract. Women may complain of vulvar, vaginal or clitoral pain while men may experience pain at the tip of the penis or in the testicles. Both men and woman have reported that their urine may feel hot or burn during urination.
- Urethral Symptoms: Some patients experience discomfort entirely in their urethra. It can be a sharp, burning pain.
For many patients, flares can be the worst at night when there are fewer distractions and it's much harder to ignore. Here's a typical flare. A patient may go to bed at 10PM and by 11PM they've woken up with a strong need to urinate. They might actually empty their bladder of, say, 1/2 cup of urine. They return to bed, to awaken at forty five minutes later with another intense need to void. Their bladder may feel very full, but when they try to urinate, only a teaspoon or so of urine comes out. They then return to bed, and sometimes within minutes, have yet another sensation that their bladder is very full. But, when they actually urinate, nothing comes out. They then struggle with symptoms of frequency and/or pain for the rest of the night, often resulting in little, if any, sleep. Sound familiar?? You are not alone!
Perhaps the most frustrating symptom is the "false" sense of fullness that drives you to the restroom over and over and over. Your bladder may feel so full that you desperately need to urinate but when you try, there is little if any volume. You might strain and strain only to get a drop of urine. (Straining is BAD! Don't do it!)
Why does this happen?? The bladder has two sets of nerves. One set controls urinary frequency (alpha afferent nerves) and the other, normally silent, nerves control pain signals (c-fibers). When the bladder becomes irritated, the first nerves that usually react and become irritated are the nerves that control frequency. Thus, when you have a flare, often the very first sign is increased frequency and a need to urinate. The pain nerves are much harder to activate but once they do turn on, they can cause overwhelming pain and discomfort. So... that "false sense of fullness" is really sign that you're in a major flare and that your bladder is severely irritated. And, yes, if you drink coffee or soda at this time, you're a fool because that will only irritate the nerves more.
Could my flare be a bladder infection (UTI)?
Many IC patients automatically assume that if they have bladder symptoms, they must have a UTI. In fact, some have taken antibiotics for years only to discover after the fact that they never had infection. They were just having IC flares. The symptoms are virtually identical. Patients with a UTI, however, may have an additional burning sensation in the urethra during urination.
It can be very helpful to a UTI Test Kit on hand so that you can, when worried, do a preliminary test on your urine to determine if you might have a UTI. UTI Test Kits are very easy to use. They provide a small strip of paper which you briefly insert into your urine stream. Easy as pie! If the test strip turns color, then you know that you should contact your physician immediately so that you can leave a urine sample for a culture and, if necessary, receive antibiotics. But, if your home test kit shows no reaction, it may be that you really are just having an IC flare.
The Secret To Managing IC Flares
Here's an example that we often use in our phone support. You walk through your living room with a glass of water and see a flicker of flames at the bottom of your drapes. You walk out of the room and come back ten minutes later with that same glass of water, and see that your drapes are a raging inferno. At what point of time would that one glass of water stopped that fire?? Early! The same is true for managing IC flares and pain. The earlier you catch them, the easier it can be to stop them and the less it takes to stop them. Veteran patients often recognize their early warning signs (such as a specific type of pain) and then immediately begin using the tips below. Often, this can stop the flare in its tracks.
Other patients, though, feel that if they stop and rest, they are letting IC win. And so they push and push through the pain. They don't use their pain medications until it's a desperate situation. They wait much too long and often hurt themselves more.
Try thinking of your IC as an injury. Your bladder wall has tiny wounds in it. So, how would you care for any painful wound on your body. You'd clean it with water. So make sure that you're an adequate amount of plain water. Moderate your diet. You certainly wouldn't pour coffee or tea on a wound on your hand.. so why are putting it on wounds in your bladder. You would also rest. So, don't try to run a marathon on your aching bladder. When your IC symptoms start to flare, give yourself permission to stop and rest.
Typical Flare Triggers
(1) DIET - The most common IC flares are diet induced. There is nothing sadder than talking with a patient, crying in pain, who has never been told about diet. One IC patient called our office quite desperate, bemoaning the fact that no therapy had ever helped her. She later admitted that she drank a six-pack of ginger ale each day. In our opinion, few therapies would work when various irritants are assaulting the bladder, day after day.
(2) HORMONES - The bladder is extremely sensitive to the hormone changes that occur each month during the menstrual cycle. However, each patient may respond differently to hormones. Some patients flare when their progesterone levels are higher, while others flare when their estrogen levels are higher. Many women struggle with an IC flare on the day that they ovulate and a few days before their period. The good news is that these hormone-induced flares are often predictable and short term. One thing that you might find helpful is to do avoiding diary for a few months and also track your menstrual cycle. This will help you determine if you are having any hormone induced flares and will also help you see that they can be very short term and often not worth worrying about.
(3) VIBRATION - If you had a broken leg, would it hurt if you shook it up and down? Well, yeah! When an IC bladder is jarred or bounced around it can hurt, thus driving, flying and traveling are well known IC triggers. In fact, one research study found that 50% of all IC patients had pain while driving or riding in a car. The culprit is the vibration of the car on the bladder and pelvis. Because the bladder and surrounding muscles are already so sensitized, jarring and bouncing over roads can create more irritation and also trigger painful muscle spasms. Thus, IC patients frequently report that they cannot drive long distances without experiencing great discomfort. If you’re in an IC flare, it’s best to limit car travel to short distances.
(4) STRESS - Does stress cause IC? Not that we’re aware of but it can certainly trigger an IC flare. IC patients frequently report that their symptoms worsen during periods of high physical or emotional stress. Consider the fact that when patients get very cold, they often have more bladder symptoms. Emotional stress creates similar reactions in the bladder through no fault of the patient. In the past few years, several IC researchers have focused on how nerves in the spinal cord and bladder react in highly stressful situations. They have found that intense stress causes an euroendocrine response throughout the body, brain, spinal cord and that appears to be contributing to our bladder symptoms and pain levels.
(5) CHEMICAL EXPOSURE - Do you have a very sensitive sense of smell?? If so, you're not alone. Many IC patients seem to have varying levels of sensitivity to smells, sounds and, yes, chemicals. IC patients often report that various chemical exposures and/or medications can trigger an IC flare. The usual culprits are soaps, detergents and laundry products that leave an irritating chemical film in our clothing or skin that can irritate our sensitive tissues. Sometimes harsh smells in the home, such as cleansers, can trigger discomfort.
(6) VITAMINS & SUPPLEMENTS - Visit any IC support group and you’ll find that most patients can’t tolerate multivitamins of any type. Multivitamins are well known IC triggers because they contain Vitamins C and B6, both infamous for irritating the bladder and creating discomfort. Patients often do better when taking individua lvitamins and/or supplements, such as a simple Calcium Citrate pill. The book “A Taste of the Good Life: A Cookbook for an IC Diet”has an extensive discussion of vitamins, as well as suggestions on IC friendly forms of each.
(7) SEX & INTIMACY - A number of IC patients report that sexual intercourse can trigger an IC flare. Men with IC may experience a searing pain at the moment of orgasm. Women with IC often feel their worst 24-48 hours after intercourse, with increased levels of frequency, urgency or pain. Men and women can also struggle with intense pelvic floor muscle spasms. Read more in the ICN Guide To Sex and Intimacy.
(8) EXERCISE - Exercise, particularly workouts that involve the pelvic area, can trigger an IC flare. Bicycle seats put unusually high pressure on the pelvic floor muscles, thus exacerbating ICsymptoms. Other patients have reported that workouts that jar the pelvis, such as running or stair master, can provoke pain. Exercise is possible as an IC patient, but it’svery important to pace yourself and pick your exercises carefully.
Flare Coping Tips
How you manage a flare depends, in great part, upon what you triggered it. For example, if you're having a flare from a long car ride or intimacy, your primary goal is to calm and soothe the muscles, by using a heating pad, a muscle relaxant and/or even a vaginal valium suppository. Of course, this isn't the time to go aggravate the muscles further by exercising in depth.
If you're having a flare from diet, which tends to be more sharp and uncomfortable, you may want to drink some extra water (not alot, mind you) to help dilute the urine in your bladder. You could help alkalinize your urine by using Prelief, taking some TUMS or by drinking a large glass of water with 1/2 teaspoon of baking soda dissolved in it. Using baking soda is extreme and should not be done frequently. Of course, this is the time to go back to your conservative IC diet so that you don't irritate your bladder further.
Hormone induced flares are often so short term that you may not need much to get through it other than, again, the use of a heating pad or, if needed, some pain medication.
Flares from chemical exposures, such as laundry detergent, are also often short term but can create extreme pain and discomfort in the vulvar and perineal area. In these cases, it's important to wear loose clothing, use a periwash bottle (filled with cold water) to instantly calm and soothe those very tender tissues. Some patients report that cold packs (wrapped in a towel before placed on the crotch) can help.
Pain Treatment May Be Required
Regardless of the trigger, some flares can provoke excruciating pain that requires treatment so that you are not suffering. Worse, grinning and bearing pain, allowing yourself to suffer and/or refusing to use medications may create even more neurosensitivity, including a condition called central sensitization. Pain should be treated promptly rather than be allowed to occur for extended periods of time.
Using pain medication can be controversial. Some urologists downplay the pain of IC and refuse to provide medication. Others are very compassionate and will help you find medication that can help you sleep and function better. In any case, a proper use of pain medication is not to escape life or "get high" but so that you can regain functionality in your daily, such as go to work, church, etc. There are a wide variety of pain medications that can help:
- OPIOIDS - Opioids (i.e. Tylenol with Codeine, Morphine, etc.) are the mainstream of treatment for moderate to severe pain. Opioids are grouped into categories based on their duration of action (short half-life drugs or long-acting sustained-release agents). Opioids are available as oral medications, rectal suppositories, transdermal patches, subcutaneous injections, intravenous injections, by epidural, subdermal and intramuscular injections.
- ANTIDEPRESSANTS - Many patients are offended that a doctor would recommend a “psychiatric” medication, implying that they don’t believe the pain is real. Happily,this is not the case. Antidepressants have long been useful in the treatment of long-term chronic pain and appear to strengthen the body’s internal pain-fighting mechanism. Antidepressants can also improve the quality of sleep and may increase the effectiveness of other pain medications. Antidepressants have long been useful in the treatment of chronic pain (6) including: amitriptyline, imiprimine, doxepin, desipramine, and nortriptyline.
- ANTIHISTAMINES - Antihistamines (i.e. hydroxyzine) can play an important role in the treatment of IC discomfort. Antihistamines help reduce histamine-induced irritation in the bladder, particularly in patients with a history of allergies. When used with opioids, antihistamines apparently help to increase the pain-reducing action of the opioid.
- HYBRID PAIN MEDICATIONS - Tramadol (Ultram®) and tramadol with acetaminophen (Ultracet™) are prescription pain medications used for moderate pain. It is a weak opioid that acts on parts of the brain and spinal cord to reduce pain sensation. It also appears to reduce the size of the pain signal. Propoxyphene (Darvon®,Darvocet®) is a mild opioid analgesic related to methadone and is used for mild to moderate pain.
- MUSCLE RELAXANTS - Muscle relaxants can be helpful for patients struggling with pelvic floor tension. While known for their treatment of anxiety, diazepam (Valium®) and cyclobenzaprine (Flexeril®) have been found to be helpful in the treatment of muscle spasms.
- URINARY ANESTHETICS - Oral phenazopyridine hydrochloride (Pyridium®) is a urinary anesthetic. It is best known for turning urine orange in color and may be helpfu lfor mild discomfort. Patients may find, however, that it has little effect on moderate to severe pain. This medication is not recommended for long-term use because of its potential to affect the production of blood cells. Urised® is a “combination” medication that contains an anesthetic and an anticholinergic agent that helps to relax the bladder.
For additional information on pain control, please refer to the ICN Special Report on Bladder Pain which discusses, in depth, why pain occurs, what triggers bladder pain and the many medications and treatments that can be used to fight pain.