I hope this pain doesnt last forever...that there will be a cure, or a way for me to get the relief i need soon. I'm at the point where teaching is almost impossibe, and sadly Im looking at short or long term leave from teaching. I've missed a lot of teaching days for theapy and doc visits. I'm out of leave and have taken many MANY hours without pay. It is so hard for me to even think of leaving my special kindergarten kids! But, tomorrow I am going to the district to ask for qualification paperwork for extended leave.
It hurts my heart soooooooooooooooooo much. I've taught so many days in pain, not taking pain meds because I am responsible for these little spirits. I've seen childlike love in their eyes as they have comforted me with back rubs, pillows, heated rice bags, letters, cards, ice packs...tender hugs and loves.
I've told them I know Heavenly Father sent each one of them here to be together in my kindergarten class. I've told them, and shown them the ways to be compassionate and empathetic toward all good people. I don't know if my heart can go on without seeing them every day. I miss them already, and I don't even know if I'll qualify for leave. I know my body may be unable to go on right now, but my heart won't let go. I've had a hard time expressing that to my principal, friends, and students.
My principal thinks it would be best if I just take a 30 day leave without telling the kids, and then returning for the last 2 weeks of school. I hope their heart understands... I hope my heart makes it. I know it is what's best for my health for now. I just worry so much about those little hearts, but I know Heavenly Father will show us the way. He's been with me all along and I know He will not leave me comfortless!I've had several therapists working together, I've met some of the sweetest caregivers, and some who are not so caring! Many of them are truely angels----they just have to be angels from Heaven blessing me in this journey. I feel Heavenly Father's love all around me.I have met hundred's of women via face book who suffer as I do. They are fabulous and couragious women! Many of them suffer this journey alone without the support of family and friends. I message many IC & PNE sisters all over the world. Although some of my posts sound like I am compaining with pain, I am in pain, but I'm sending out "bait" to find those who suffer this same journey. And to my surprise there are thousands of us on face book, more each day. We don't know what is causing the breakdown in our bladder inner lining...possibly something enviromently. It's absolutely frightening that this disease is running rampid through so many bladders, just as breast cancer started so many years ago. Medical Science has been caught off guard with this autoimmune disease. YES I hurt, I work in pain tirelessly, and come home exhausted. I love you all so much, and I won't stop until I am whole and healthy! I know I will get there. Thank you Chrissy for the techniques you've learned that I'm sure we will use in the future. The chiro told me some ne things that will be painful but if you help me I can make it, I can do it! Right now things are very painful but it won't last forever, I promise. I have to have that kind of faith to help me navagate this journey.
3/22/10 District meet with Nayola@ DistrictNeed to apply for Family Medical Leave.... Sharon and Dave went with me. They were my voice and my recorder as I was in TERRIBLE PAIN. I have to take 10 days without pay! Then 30 calendar days without pay. I have to pay my insurance premiums and flex spending dollars. I feel SICK!!! I KNOW I pushed the button donating to the catasrophic leave bank. I always do!But here I am, PNE & IC taking over my life. I hurt. I can't think!
I've lost me!I've lost my voice.
Ive lost all my favorite foods
Ive lost the energy to shop.
Ive lost the desire to cook & clean.
Ive lost the ENERGY to park & shop.
Ive lost the ability to sit in church.
Ive lost my mind.
Ive lost my favorite clothes.
Ive lost TIME with my grandKids
Ive lost sitting; car, plane, boat, watching tv, movies, restaraunts, SCRAPPING & crafting, vacations.
I've lost my hobbies.
Ive lost time with my hubby.
Ive lost my career's passion teaching.
Ive lost money.
it continues.... Treatment after treament drug after drug.
Ive lost all sick leave.
I've lost all vacation leave.
Im giving up my classroom, kids, materials I've created over the years to a "long term sub!" I've spent much of the day planning the rest of the year for someone else to carry on without me. Ive lost time teaching Tage.
And seeing Kyle's family at the end if the school day. School was my safe place to see them.
Ive lost energy, joy...
I've lost trust in doctors & therapists. I know they TRY, but the bottom line is they don't know how to help me, I'm not even sure they understand or believe me!
IVE LOST ME
I havent lost my FAITH, but I still..,want to run as far & fast as i can away from this gnawing, nagging twisting, hot aching PAIN.
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Adding Humor to the Flare's of IC: Welcome to My IC Home
Enjoy the Bright Moment: Every Day Has One...
* Interstitial Cystitis * An Auto Immune Disease causing Painful Bladder Disorder
Huggles & Kissels
Adding Humor to the Flare's of IC: Welcome to My IC Home
I'm VERY short, and I feel like a child..................... and just want IC Pain to go away!
I hope to share my story insights with other's who have this disease.... the good and the bad... and to be accepted for doing so, and to accept graciously if you choose to share! I hope anyone visiting will COMMENT... and leave your story & insights: Sharing makes us feel so not alone! Huggles and Kissels to all who will
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**To learn what IC is... read along the right hand side bar...
just below the tummy picture... the green print...
For most of you, OMaGosh YOU already know what it is! LOL X a Million!!!
hover here!
**To learn what IC is... read along the right hand side bar...
just below the tummy picture... the green print...
For most of you, OMaGosh YOU already know what it is! LOL X a Million!!!
Interstitial Cystitis
Enjoy the Bright Moment: Every Day Has One...
My Story Posts
- 1st Hydro/Cysto Surgical Procedure
- Adhesions: My Biggest Challenge
- After Dr. Sharp
- Asking For Help
- Counting My Blessings: 1st PT Visit
- Couragew
- Cranial Sacral Massage
- Digi's of My Bladder
- DMSO At Home
- DMSO: The Big Step to Do It Myself
- Email Intro to Family
- Flare: Oh Crap AGAIN!
- Going Out: New Moon
- I Feel Lost
- I Killed The Fruit Bowl
- Insurance Grrrr
- Look What I Got!
- My Flare Monitoring
- My Life
- Note to Neighbor
- Olive Oil Therapy
- Pain Scale Charts
- Physical Therapy
- Preparing for the Doctor Visit
- Pudendal Nerve Entrapment
- Scared
- Short Term Disability
- Sorry: I'm just NOT myself!
- Throw Out Perfectness !
- Throwing In The Towel
- What's In Your Ice Box?
- Will I Ever Find Me?
- Yah! Scrapped This Too!
- You Scrapped What? My Med Bed! AKA Pill Box
Alphabetical Posts
- * Share Your Story
- Constipation Relief Ideas
- Coping: I Can Do This
- Coping: Keep Climbing
- Coping: The Tinkerbell Phylosophy
- Coping: Your Spirit is Tapping
- Diagnosing IC
- DMSO Home Treatment
- Eating the IC Way
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- IC : Life Changes
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- ICN FQ's & Links - AWESOME!
- Invisible Illness
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- Medication: Elmiron
- News: Only on 46
- Pain Scale Charts
- Pelvic-Physiotherapy
- Preparing for Dr. Visits
- San Diego IC Conference
- Spoon Theory
- The After Holiday CRASH
- The Perfect IC Bathroom
- Understanding IC
- UpDate Dec. 2, 2009
- Urology Center of Colorado
- We Need A Cure
- What does an IC Bladder look like?
But you don't LOOK sick!
Interstitial Cystitis is Real
What is IC/PBS?
Interstitial cystitis (IC) is a condition that results in recurring discomfort or PAIN in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often get worse during menstruation. They generally experience pain during vaginal intercourse.
The urinary system.
Because IC varies so much in symptoms and severity, most researchers believe it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC/PBS includes all cases of urinary pain that can’t be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases.
In IC/PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations—pinpoint bleeding caused by recurrent irritation—often appear on the bladder wall. Hunner’s ulcers are present in 10 percent of people with IC. Some people with IC/PBS find that their bladder cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination, also called nocturia.
IC/PBS is far more common in women than in men. Of the estimated 1.3 million Americans with IC, more than 1.2 million are women.
What causes IC/PBS?
Some of the symptoms of IC/PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of people with IC/PBS. Furthermore, people with IC/PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC/PBS and to find effective treatments.
In recent years, researchers have isolated a substance found almost exclusively in the urine of people with IC. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.
Many women with IC/PBS have other conditions such as irritable bowel syndrome and fibromyalgia. Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.
Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.
How is IC/PBS diagnosed?
Because symptoms are similar to those of other disorders of the bladder and there is no definitive test to identify IC/PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC/PBS. The most common of these diseases in both sexes are urinary tract infections and bladder cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome. IC/PBS is not associated with any increased risk of developing cancer.
The diagnosis of IC/PBS in the general population is based on the
* presence of pain related to the bladder, usually accompanied by frequency and urgency
* absence of other diseases that could cause the symptoms
Diagnostic tests that help rule out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.
Urinalysis and Urine Culture
Examining urine with a microscope and culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC/PBS. A urine sample is obtained either by catheterization or by the clean catch method. For a clean catch, the patient washes the genital area before collecting urine midstream in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC/PBS.
Cystoscopy under Anesthesia with Bladder Distention
The doctor may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the doctor uses a cystoscope—an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light—to see inside the bladder and urethra. The doctor might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful for people with IC/PBS, they must be given some form of anesthesia for the procedure.
What are the treatments for IC/PBS?
Scientists have not yet found a cure for IC/PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear with a change in diet or treatments or without explanation. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.
Because the causes of IC/PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of treatments. As researchers learn more about IC/PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.
Bladder Distention
Many people with IC/PBS have noted an improvement in symptoms after a bladder distention has been done to diagnose the condition. In many cases, the procedure is used as both a diagnostic test and initial therapy.
Researchers are not sure why distention helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.
Bladder Instillation
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, brand name Rimso-50). DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to the doctor’s office.
Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.
A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 7 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a complete blood count and kidney and liver function tests, should be done about every 6 months.
Oral Drugs
Pentosan Polysulfate Sodium (Elmiron)
This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Doctors do not know exactly how the drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder.
The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.
Elmiron’s side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.
Elmiron may affect liver function, which should therefore be monitored by the doctor.
Because Elmiron has not been tested in pregnant women, the manufacturer recommends it not be used during pregnancy, except in the most severe cases.
Other Oral Medications
Aspirin and ibuprofen may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.
Some people have experienced improvement in their urinary symptoms by taking tricyclic antidepressants or antihistamines. A tricyclic antidepressant called amitriptyline (Elavil) may help reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some people may not be able to take it because it makes them too tired during the day. In people with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer-acting narcotics may be necessary.
All drugs—even those sold over the counter—have side effects. A person should always consult a doctor before using any drug for an extended amount of time.
Electrical Nerve Stimulation
Mild electrical pulses can be used to stimulate the nerves to the bladder—either through the skin or with an implanted device. The method of delivering impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, mild electric pulses enter the body for minutes to hours, two or more times a day either through wires placed on the lower back or just above the pubic area—between the navel and the pubic hair—or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.
TENS is relatively inexpensive and allows people with IC/PBS to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in people with Hunner’s ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.
If TENS is effective in relieving symptoms, a person may consider having a device implanted that delivers regular impulses to the bladder. A wire is placed next to the tailbone and attached to a permanent stimulator under the skin. The FDA has approved this device, marketed as the Inter-Stim system, to treat urge incontinence, urgency-frequency syndrome, and urinary retention in people for whom other treatments have not worked.
Diet
No scientific evidence links diet to IC/PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.
Exercise
Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.
Bladder Training
People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void—empty their bladder—at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress. The diary is a chart with columns for time, fluid intake, trips to the bathroom, accidental leaks, level of urgency, and activity.
Bladder Diary from What I need to know about Bladder Control for Women at www.kidney.niddk.nih.gov.
Surgery
Surgery should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has advantages and complications that should be discussed with a surgeon. A doctor may recommend consulting another surgeon for a second opinion before taking this step. Most surgeons are reluctant to operate because some people still have symptoms after surgery.
People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon, their family, and people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and failure.
People should check with their doctor to locate a surgeon experienced in performing specific procedures.
Two procedures—fulguration and resection of ulcers—can be done with instruments inserted through the urethra. Fulguration involves burning Hunner’s ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for people with Hunner’s ulcers and should be done only by doctors with the special training and expertise needed to perform the procedure.
Another surgical treatment is augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient’s bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient’s colon—large intestine—is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC/PBS can sometimes recur on the segment of colon used to enlarge the bladder.
Even in carefully selected patients—those with small, contracted bladders—pain, frequency, and urgency may remain or return after surgery, and they may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients become incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.
Bladder removal, called a cystectomy, is another, infrequently used surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using a second technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.
A third method to reroute urine involves making a new bladder from a piece of the patient’s colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.
Even after total bladder removal, some patients still experience variable IC/PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and seriously considering the potential outcome.
Are there any special concerns regarding IC/PBS?
Cancer
No evidence exists that IC/PBS increases the risk of bladder cancer.
Pregnancy
Researchers have little information about pregnancy and IC/PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC/PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.
Coping
The emotional support of family, friends, and other people with IC/PBS is very important in helping patients cope. Studies have found that people who learn about the disorder and become involved in their own care do better than people who do not.
The Interstitial Cystitis Association (ICA) maintains a list of support groups.
Hope through Research
Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC/PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.
The National Institute of Diabetes and Digestive and Kidney Diseases’ (NIDDK’s) investment in scientifically meritorious IC/PBS research across the country has grown considerably since 1987. The Institute now supports research that looks at various aspects of IC/PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC/PBS. In addition to funding research, the NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.
Clinical Research Network
The Interstitial Cystitis Clinical Research Network (ICCRN) is a product of two NIDDK programs: the Interstitial Cystitis Database (ICDB) Study and the Interstitial Cystitis Clinical Trials Group (ICCTG). Established in 1991, the ICDB was a 5-year prospective cohort study of more than 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. The study described the longitudinal changes of urinary symptoms, the impact of IC on quality of life, treatment patterns, and the relationship between bladder biopsy findings and patient symptoms. The ICCTG was established in 1996 as a follow-up to the ICDB study. The clinical trials group developed two randomized, controlled clinical trials of promising therapies, one using oral therapies—pentosan polysulfate sodium (Elmiron) and hydroxyzine hydrochloride (Atarax)—and the other administering intravesical treatment using Bacillus Calmette-Guérin (BCG). BCG is a vaccine for tuberculosis that stimulates the immune system and may have an effect on the bladder. The ICCTG also developed and conducted ancillary studies of various biomarkers such as heparin-binding-growth-factor-like-growth-factor (HB-EGF) and anti-proliferative factor (APF).
In 2003, the ICCTG became the ICCRN, which is conducting additional clinical trials, either sequentially or concurrently, over a second 5-year period. Ancillary studies will be developed and conducted in conjunction with the trials. One of these trials is studying the effectiveness of amitriptyline (Elavil) in treating PBS, which includes IC. Amitriptyline has FDA approval for the treatment of depression, but researchers believe the drug may work to block nerve signals that trigger pain in the bladder and may also decrease muscle spasms in the bladder, helping to cut both pain and frequent urination. Participants in the trial will be randomly assigned to take up to 75 milligrams of amitriptyline or a placebo each day for 14 to 26 weeks.
Interstitial cystitis (IC) is a condition that results in recurring discomfort or PAIN in the bladder and the surrounding pelvic region. The symptoms vary from case to case and even in the same individual. People may experience mild discomfort, pressure, tenderness, or intense pain in the bladder and pelvic area. Symptoms may include an urgent need to urinate, a frequent need to urinate, or a combination of these symptoms. Pain may change in intensity as the bladder fills with urine or as it empties. Women’s symptoms often get worse during menstruation. They generally experience pain during vaginal intercourse.
The urinary system.
Because IC varies so much in symptoms and severity, most researchers believe it is not one, but several diseases. In recent years, scientists have started to use the term painful bladder syndrome (PBS) to describe cases with painful urinary symptoms that may not meet the strictest definition of IC. The term IC/PBS includes all cases of urinary pain that can’t be attributed to other causes, such as infection or urinary stones. The term interstitial cystitis, or IC, is used alone when describing cases that meet all of the IC criteria established by the National Institute of Diabetes and Digestive and Kidney Diseases.
In IC/PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations—pinpoint bleeding caused by recurrent irritation—often appear on the bladder wall. Hunner’s ulcers are present in 10 percent of people with IC. Some people with IC/PBS find that their bladder cannot hold much urine, which increases the frequency of urination. Frequency, however, is not always specifically related to bladder size; many people with severe frequency have normal bladder capacity. People with severe cases of IC/PBS may urinate as many as 60 times a day, including frequent nighttime urination, also called nocturia.
IC/PBS is far more common in women than in men. Of the estimated 1.3 million Americans with IC, more than 1.2 million are women.
What causes IC/PBS?
Some of the symptoms of IC/PBS resemble those of bacterial infection, but medical tests reveal no organisms in the urine of people with IC/PBS. Furthermore, people with IC/PBS do not respond to antibiotic therapy. Researchers are working to understand the causes of IC/PBS and to find effective treatments.
In recent years, researchers have isolated a substance found almost exclusively in the urine of people with IC. They have named the substance antiproliferative factor, or APF, because it appears to block the normal growth of the cells that line the inside wall of the bladder. Researchers anticipate that learning more about APF will lead to a greater understanding of the causes of IC and to possible treatments.
Many women with IC/PBS have other conditions such as irritable bowel syndrome and fibromyalgia. Scientists believe IC/PBS may be a bladder manifestation of a more general condition that causes inflammation in various organs and parts of the body.
Researchers are beginning to explore the possibility that heredity may play a part in some forms of IC. In a few cases, IC has affected a mother and a daughter or two sisters, but it does not commonly run in families.
How is IC/PBS diagnosed?
Because symptoms are similar to those of other disorders of the bladder and there is no definitive test to identify IC/PBS, doctors must rule out other treatable conditions before considering a diagnosis of IC/PBS. The most common of these diseases in both sexes are urinary tract infections and bladder cancer. In men, common diseases include chronic prostatitis or chronic pelvic pain syndrome. IC/PBS is not associated with any increased risk of developing cancer.
The diagnosis of IC/PBS in the general population is based on the
* presence of pain related to the bladder, usually accompanied by frequency and urgency
* absence of other diseases that could cause the symptoms
Diagnostic tests that help rule out other diseases include urinalysis, urine culture, cystoscopy, biopsy of the bladder wall, distention of the bladder under anesthesia, urine cytology, and laboratory examination of prostate secretions.
Urinalysis and Urine Culture
Examining urine with a microscope and culturing the urine can detect and identify the primary organisms that are known to infect the urinary tract and that may cause symptoms similar to IC/PBS. A urine sample is obtained either by catheterization or by the clean catch method. For a clean catch, the patient washes the genital area before collecting urine midstream in a sterile container. White and red blood cells and bacteria in the urine may indicate an infection of the urinary tract, which can be treated with an antibiotic. If urine is sterile for weeks or months while symptoms persist, the doctor may consider a diagnosis of IC/PBS.
Cystoscopy under Anesthesia with Bladder Distention
The doctor may perform a cystoscopic examination in order to rule out bladder cancer. During cystoscopy, the doctor uses a cystoscope—an instrument made of a hollow tube about the diameter of a drinking straw with several lenses and a light—to see inside the bladder and urethra. The doctor might also distend or stretch the bladder to its capacity by filling it with a liquid or gas. Because bladder distention is painful for people with IC/PBS, they must be given some form of anesthesia for the procedure.
What are the treatments for IC/PBS?
Scientists have not yet found a cure for IC/PBS, nor can they predict who will respond best to which treatment. Symptoms may disappear with a change in diet or treatments or without explanation. Even when symptoms disappear, they may return after days, weeks, months, or years. Scientists do not know why.
Because the causes of IC/PBS are unknown, current treatments are aimed at relieving symptoms. Many people are helped for variable periods by one or a combination of treatments. As researchers learn more about IC/PBS, the list of potential treatments will change, so patients should discuss their options with a doctor.
Bladder Distention
Many people with IC/PBS have noted an improvement in symptoms after a bladder distention has been done to diagnose the condition. In many cases, the procedure is used as both a diagnostic test and initial therapy.
Researchers are not sure why distention helps, but some believe it may increase capacity and interfere with pain signals transmitted by nerves in the bladder. Symptoms may temporarily worsen 24 to 48 hours after distention, but should return to predistention levels or improve within 2 to 4 weeks.
Bladder Instillation
During a bladder instillation, also called a bladder wash or bath, the bladder is filled with a solution that is held for varying periods of time, averaging 10 to 15 minutes, before being emptied.
The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (DMSO, brand name Rimso-50). DMSO treatment involves guiding a narrow tube called a catheter up the urethra into the bladder. A measured amount of DMSO is passed through the catheter into the bladder, where it is retained for about 15 minutes before being expelled. Treatments are given every week or two for 6 to 8 weeks and repeated as needed. Most people who respond to DMSO notice improvement 3 or 4 weeks after the first 6- to 8-week cycle of treatments. Highly motivated patients who are willing to catheterize themselves may, after consultation with their doctor, be able to have DMSO treatments at home. Self-administration is less expensive and more convenient than going to the doctor’s office.
Doctors think DMSO works in several ways. Because it passes into the bladder wall, it may reach tissue more effectively to reduce inflammation and block pain. It may also prevent muscle contractions that cause pain, frequency, and urgency.
A bothersome but relatively insignificant side effect of DMSO treatments is a garlic-like taste and odor on the breath and skin that may last up to 7 hours after treatment. Long-term treatment has caused cataracts in animal studies, but this side effect has not appeared in humans. Blood tests, including a complete blood count and kidney and liver function tests, should be done about every 6 months.
Oral Drugs
Pentosan Polysulfate Sodium (Elmiron)
This first oral drug developed for IC was approved by the FDA in 1996. In clinical trials, the drug improved symptoms in 30 percent of patients treated. Doctors do not know exactly how the drug works, but one theory is that it may repair defects that might have developed in the lining of the bladder.
The FDA-recommended oral dosage of Elmiron is 100 mg, three times a day. Patients may not feel relief from IC pain for the first 2 to 4 months. A decrease in urinary frequency may take up to 6 months. Patients are urged to continue with therapy for at least 6 months to give the drug an adequate chance to relieve symptoms.
Elmiron’s side effects are limited primarily to minor gastrointestinal discomfort. A small minority of patients experienced some hair loss, but hair grew back when they stopped taking the drug. Researchers have found no negative interactions between Elmiron and other medications.
Elmiron may affect liver function, which should therefore be monitored by the doctor.
Because Elmiron has not been tested in pregnant women, the manufacturer recommends it not be used during pregnancy, except in the most severe cases.
Other Oral Medications
Aspirin and ibuprofen may be a first line of defense against mild discomfort. Doctors may recommend other drugs to relieve pain.
Some people have experienced improvement in their urinary symptoms by taking tricyclic antidepressants or antihistamines. A tricyclic antidepressant called amitriptyline (Elavil) may help reduce pain, increase bladder capacity, and decrease frequency and nocturia. Some people may not be able to take it because it makes them too tired during the day. In people with severe pain, narcotic analgesics such as acetaminophen (Tylenol) with codeine or longer-acting narcotics may be necessary.
All drugs—even those sold over the counter—have side effects. A person should always consult a doctor before using any drug for an extended amount of time.
Electrical Nerve Stimulation
Mild electrical pulses can be used to stimulate the nerves to the bladder—either through the skin or with an implanted device. The method of delivering impulses through the skin is called transcutaneous electrical nerve stimulation (TENS). With TENS, mild electric pulses enter the body for minutes to hours, two or more times a day either through wires placed on the lower back or just above the pubic area—between the navel and the pubic hair—or through special devices inserted into the vagina in women or into the rectum in men. Although scientists do not know exactly how TENS relieves pelvic pain, it has been suggested that the electrical pulses may increase blood flow to the bladder, strengthen pelvic muscles that help control the bladder, or trigger the release of substances that block pain.
TENS is relatively inexpensive and allows people with IC/PBS to take an active part in treatment. Within some guidelines, the patient decides when, how long, and at what intensity TENS will be used. It has been most helpful in relieving pain and decreasing frequency in people with Hunner’s ulcers. Smokers do not respond as well as nonsmokers. If TENS is going to help, improvement is usually apparent in 3 to 4 months.
If TENS is effective in relieving symptoms, a person may consider having a device implanted that delivers regular impulses to the bladder. A wire is placed next to the tailbone and attached to a permanent stimulator under the skin. The FDA has approved this device, marketed as the Inter-Stim system, to treat urge incontinence, urgency-frequency syndrome, and urinary retention in people for whom other treatments have not worked.
Diet
No scientific evidence links diet to IC/PBS, but many doctors and patients find that alcohol, tomatoes, spices, chocolate, caffeinated and citrus beverages, and high-acid foods may contribute to bladder irritation and inflammation. Some people also note that their symptoms worsen after eating or drinking products containing artificial sweeteners. Eliminating various items from the diet and reintroducing them one at a time may determine which, if any, affect a person’s symptoms. However, maintaining a varied, well-balanced diet is important.
Exercise
Many patients feel that gentle stretching exercises help relieve IC/PBS symptoms.
Bladder Training
People who have found adequate relief from pain may be able to reduce frequency by using bladder training techniques. Methods vary, but basically patients decide to void—empty their bladder—at designated times and use relaxation techniques and distractions to keep to the schedule. Gradually, they try to lengthen the time between scheduled voids. A diary in which to record voiding times is helpful in keeping track of progress. The diary is a chart with columns for time, fluid intake, trips to the bathroom, accidental leaks, level of urgency, and activity.
Bladder Diary from What I need to know about Bladder Control for Women at www.kidney.niddk.nih.gov.
Surgery
Surgery should be considered only if all available treatments have failed and the pain is disabling. Many approaches and techniques are used, each of which has advantages and complications that should be discussed with a surgeon. A doctor may recommend consulting another surgeon for a second opinion before taking this step. Most surgeons are reluctant to operate because some people still have symptoms after surgery.
People considering surgery should discuss the potential risks and benefits, side effects, and long- and short-term complications with a surgeon, their family, and people who have already had the procedure. Surgery requires anesthesia, hospitalization, and weeks or months of recovery. As the complexity of the procedure increases, so do the chances for complications and failure.
People should check with their doctor to locate a surgeon experienced in performing specific procedures.
Two procedures—fulguration and resection of ulcers—can be done with instruments inserted through the urethra. Fulguration involves burning Hunner’s ulcers with electricity or a laser. When the area heals, the dead tissue and the ulcer fall off, leaving new, healthy tissue behind. Resection involves cutting around and removing the ulcers. Both treatments are done under anesthesia and use special instruments inserted into the bladder through a cystoscope. Laser surgery in the urinary tract should be reserved for people with Hunner’s ulcers and should be done only by doctors with the special training and expertise needed to perform the procedure.
Another surgical treatment is augmentation, which makes the bladder larger. In most of these procedures, scarred, ulcerated, and inflamed sections of the patient’s bladder are removed, leaving only the base of the bladder and healthy tissue. A piece of the patient’s colon—large intestine—is then removed, reshaped, and attached to what remains of the bladder. After the incisions heal, the patient may void less frequently. The effect on pain varies greatly; IC/PBS can sometimes recur on the segment of colon used to enlarge the bladder.
Even in carefully selected patients—those with small, contracted bladders—pain, frequency, and urgency may remain or return after surgery, and they may have additional problems with infections in the new bladder and difficulty absorbing nutrients from the shortened colon. Some patients become incontinent, while others cannot void at all and must insert a catheter into the urethra to empty the bladder.
Bladder removal, called a cystectomy, is another, infrequently used surgical option. Once the bladder has been removed, different methods can be used to reroute the urine. In most cases, ureters are attached to a piece of colon that opens onto the skin of the abdomen. This procedure is called a urostomy and the opening is called a stoma. Urine empties through the stoma into a bag outside the body. Some urologists are using a second technique that also requires a stoma but allows urine to be stored in a pouch inside the abdomen. At intervals throughout the day, the patient puts a catheter into the stoma and empties the pouch. Patients with either type of urostomy must be very careful to keep the area in and around the stoma clean to prevent infection. Serious potential complications may include kidney infection and small bowel obstruction.
A third method to reroute urine involves making a new bladder from a piece of the patient’s colon and attaching it to the urethra. After healing, the patient may be able to empty the newly formed bladder by voiding at scheduled times or by inserting a catheter into the urethra. Only a few surgeons have the special training and expertise needed to perform this procedure.
Even after total bladder removal, some patients still experience variable IC/PBS symptoms in the form of phantom pain. Therefore, the decision to undergo a cystectomy should be made only after testing all alternative methods and seriously considering the potential outcome.
Are there any special concerns regarding IC/PBS?
Cancer
No evidence exists that IC/PBS increases the risk of bladder cancer.
Pregnancy
Researchers have little information about pregnancy and IC/PBS but believe that the disorder does not affect fertility or the health of the fetus. Some women find that their IC/PBS goes into remission during pregnancy, while others experience a worsening of their symptoms.
Coping
The emotional support of family, friends, and other people with IC/PBS is very important in helping patients cope. Studies have found that people who learn about the disorder and become involved in their own care do better than people who do not.
The Interstitial Cystitis Association (ICA) maintains a list of support groups.
Hope through Research
Although answers may seem slow in coming, researchers are working to solve the painful riddle of IC/PBS. Some scientists receive funds from the Federal Government to help support their research, while others receive support from their employing institution, drug pharmaceutical or device companies, or patient support associations.
The National Institute of Diabetes and Digestive and Kidney Diseases’ (NIDDK’s) investment in scientifically meritorious IC/PBS research across the country has grown considerably since 1987. The Institute now supports research that looks at various aspects of IC/PBS, such as how the components of urine may injure the bladder and what role organisms identified by nonstandard methods may have in causing IC/PBS. In addition to funding research, the NIDDK sponsors scientific workshops where investigators share the results of their studies and discuss future areas for investigation.
Clinical Research Network
The Interstitial Cystitis Clinical Research Network (ICCRN) is a product of two NIDDK programs: the Interstitial Cystitis Database (ICDB) Study and the Interstitial Cystitis Clinical Trials Group (ICCTG). Established in 1991, the ICDB was a 5-year prospective cohort study of more than 600 men and women with symptoms of urinary urgency, frequency, and pelvic pain. The study described the longitudinal changes of urinary symptoms, the impact of IC on quality of life, treatment patterns, and the relationship between bladder biopsy findings and patient symptoms. The ICCTG was established in 1996 as a follow-up to the ICDB study. The clinical trials group developed two randomized, controlled clinical trials of promising therapies, one using oral therapies—pentosan polysulfate sodium (Elmiron) and hydroxyzine hydrochloride (Atarax)—and the other administering intravesical treatment using Bacillus Calmette-Guérin (BCG). BCG is a vaccine for tuberculosis that stimulates the immune system and may have an effect on the bladder. The ICCTG also developed and conducted ancillary studies of various biomarkers such as heparin-binding-growth-factor-like-growth-factor (HB-EGF) and anti-proliferative factor (APF).
In 2003, the ICCTG became the ICCRN, which is conducting additional clinical trials, either sequentially or concurrently, over a second 5-year period. Ancillary studies will be developed and conducted in conjunction with the trials. One of these trials is studying the effectiveness of amitriptyline (Elavil) in treating PBS, which includes IC. Amitriptyline has FDA approval for the treatment of depression, but researchers believe the drug may work to block nerve signals that trigger pain in the bladder and may also decrease muscle spasms in the bladder, helping to cut both pain and frequent urination. Participants in the trial will be randomly assigned to take up to 75 milligrams of amitriptyline or a placebo each day for 14 to 26 weeks.
Followers
IC Visitors
Angels to Watch over You
"Now, this is the truth: We humble people, we who feel ourselves sometimes so worthless, so good-for-nothing, we are not so worthless as we think. There is not one of us but what God's love has been expended upon. There is not one of us that He has not cared for and carressed. There is not one of us that He has not desired to save and that He has not devised a means to save. There is not one of us that He has not given His angels charge concerning. We may be insignificant and contemptible in our own eyes and in the eys of others, but the truth remains that we are children of God and that He has actually given His Angels... charge concerning us, and they watch over us and have us in their keeping."
George Q Cannon
George Q Cannon
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