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Thyroid Disease uses a blue paisley ribbon or a blue ribbon for awareness.  The cause switched from blue to blue paisley since the paisley pattern looked like thyroid follicle cells under the microscope. A pink, teal, and purple multi-colored ribbon is also used for awareness.  A butterfly image or picture is frequently used with the ribbon since the thyroid gland is butterfly shaped.

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Thyroid diseases contain many different types from an overactive thyroid called “hyperthyroidism” or a low performing thyroid called “hypothyroidism”.  Your thyroid make thyroid hormones.  When it produces too much this is “hyper-” and not enough is “hypo-”.  The thyroid gland can also become enlarged.  This condition is called “goiter”.  If the thyroid gland swells it is called “thyroiditis”.  When there are lumps in the thyroid gland they are called “thyroid nodules”.  “Thyroid Cancer” of the gland is also included in thyroid diseases.  Women are more likely than men to develop thyroid diseases.

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What is the thyroid?

Your thyroid (THY-roid) is a small gland found at the base of your neck, just below your Adam's apple. The thyroid produces two main hormones called T3 and T4. These hormones travel in your blood to all parts of your body. The thyroid hormones control the rate of many activities in your body. These include how fast you burn calories and how fast your heart beats. All of these activities together are known as your body's metabolism. A thyroid that is working right will produce the right amounts of hormones needed to keep your body’s metabolism working at a rate that is not too fast or too slow.

What is hyperthyroidism?

Some disorders cause the thyroid to make more thyroid hormones than the body needs. This is called hyperthyroidism (hy-pur-THY-roi-diz-uhm), or overactive thyroid. The most common cause of hyperthyroidism is Graves' disease. Graves’ disease is an autoimmune disorder, in which the body's own defense system, called the immune system, stimulates the thyroid. This causes it to make too much of the thyroid hormones. Hyperthyroidism can also be caused by thyroid nodules that prompt excess thyroid hormones to be made (see What are thyroid nodules?).

What are the symptoms of hyperthyroidism?

At first, you might not notice symptoms of hyperthyroidism. They usually begin slowly. But over time, a speeded up metabolism can cause symptoms such as:

• Weight loss, even if you eat the same or more food
• Eating more than usual
• Rapid or irregular heartbeat or pounding of your heart
• Anxiety
• Irritability
• Trouble sleeping
• Trembling in your hands and fingers
• Increased sweating
• Increased sensitivity to heat
• Muscle weakness
• More frequent bowel movements
• Less frequent menstrual periods with lighter than normal menstrual flow

In addition to these symptoms, people with hyperthyroidism may have osteoporosis, or weak, brittle bones. In fact, hyperthyroidism might affect your bones before you have any of the other symptoms of the disorder. This is especially true of postmenopausal women, who are already at high risk of osteoporosis.

What is hypothyroidism?

Hypothyroidism (hy-poh-THY-roi-diz-uhm) is when your thyroid does not make enough thyroid hormones. It is also called underactive thyroid. The most common cause of hypothyroidism in the United States is Hashimoto's disease. Hashimoto’s disease is an autoimmune disease, in which the immune system mistakenly attacks the thyroid. This attack damages the thyroid so that it does not make enough hormones. Hypothyroidism also can be caused by:

• Treatment of hyperthyroidism
• Radiation treatment of certain cancers
• Thyroid removal

In rare cases, problems with the pituitary gland can cause the thyroid to be less active.

What are the symptoms of hypothyroidism?

Symptoms of hypothyroidism tend to develop slowly, often over several years. At first, you may just feel tired and sluggish. Later, you may develop other symptoms of a slowed down metabolism, including:

• Weight gain, even though you are not eating more food
• Increased sensitivity to cold
• Constipation
• Muscle weakness
• Joint or muscle pain
• Depression
• Fatigue (feeling very tired)
• Pale dry skin
• A puffy face
• A hoarse voice
• Excessive menstrual bleeding

In addition to these symptoms, people with hypothyroidism may have high blood levels of LDL cholesterol. This is the so‑called "bad" cholesterol, which can increase your risk for heart disease.

What are thyroid nodules?

A thyroid nodule (NAHD-yool) is a swelling in one section of the thyroid gland. The nodule can be solid or filled with fluid or blood. You can have just one thyroid nodule or many.

Most thyroid nodules do not cause symptoms. But some thyroid nodules make too much of the thyroid hormones, causing hyperthyroidism. Sometimes, nodules get to be big enough to cause problems with swallowing or breathing. In fewer than 10 percent of cases, thyroid nodules are cancerous.

Thyroid nodules are quite common. By the time you reach the age of 50, you have a 50 percent chance of having a thyroid nodule larger than a half inch wide. The NIH does not know why nodules form in otherwise normal thyroids.

You can sometimes see or feel a thyroid nodule yourself. Try standing in front of a mirror and raise your chin slightly. Look for a bump on either side of your windpipe below your Adam's apple. If the bump moves up and down when you swallow, it may be a thyroid nodule. Ask your doctor to look at it.

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What is thyroiditis?

Thyroiditis (thy-roi-DY-tiss) is inflammation, or swelling, of the thyroid. There are several types of thyroiditis, one of which is Hashimoto's thyroiditis. Other types of thyroiditis include:

Postpartum thyroidits
Like Hashimoto's disease, postpartum thyroiditis seems to be caused by a problem with the immune system. In the United States, postpartum thyroiditis occurs in about 5 to 10 percent of women. The first phase starts 1 to 4 months after giving birth. In this phase, you may get symptoms of hyperthyroidism because the damaged thyroid is leaking thyroid hormones out into the bloodstream. The second phase starts about 4 to 8 months after delivery. In this phase, you may get symptoms of hypothyroidism because, by this time, the thyroid has lost most of its hormones. Not everyone with postpartum thyroiditis goes through both phases. In most women who have postpartum thyroiditis, thyroid function returns to normal within 12 to 18 months after symptoms start.

Risk factors for postpartum thyroiditis include having:

• An autoimmune disease, like type 1 diabetes
• A personal history or family history of thyroid disorders
• Having had postpartum thyroiditis after a previous pregnancy

Silent or painless thyroiditis
Symptoms are the same as in postpartum thyroiditis, but they are not related to having given birth.

Subacute thyroiditis
Symptoms are the same as in postpartum and silent thyroiditis, but the inflammation in the thyroid leads to pain in the neck, jaw, or ear. Unlike the other types of thyroiditis, subacute thyroiditis may be caused by an infection.

What are the symptoms of thyroid cancer?

Most people with thyroid cancer have a thyroid nodule that is not causing any symptoms. If you have a thyroid nodule, there is a small chance it may be thyroid cancer. To tell if the nodule is cancerous, your doctor will have to do certain tests (see How are thyroid diseases diagnosed?). A few people with thyroid cancer may have symptoms. If the cancer is big enough, it may cause swelling you can see in the neck. It may also cause pain or problems swallowing. Some people get a hoarse voice.

Thyroid cancer is rare compared with other types of cancer. It is more common in people who:

• Have a history of exposure of the thyroid to radiation (but not routine X-ray exposure, as in dental X-rays or mammograms)
• Have a family history of thyroid cancer
• Are older than 40 years of age

What is a goiter?

A goiter is an abnormally enlarged thyroid gland. Causes of goiter include:

• Iodine deficiency. Iodine is a mineral that your thyroid uses for making thyroid hormones. Not getting enough iodine in your food and water can cause your thyroid to get bigger. This cause of goiter is uncommon in the United States because iodine is added to table salt.
• Hashimoto's disease
• Graves' disease
• Thyroid nodules
• Thyroiditis
• Thyroid cancer

Usually, the only symptom of a goiter is a swelling in your neck. But a very large or advanced goiter can cause a tight feeling in your throat, coughing, or problems swallowing or breathing.

Having a goiter does not always mean that your thyroid is not making the right amount of hormones. Depending on the cause of your goiter, your thyroid could be making too much, not enough, or the right amount of hormones.

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How are thyroid disorders diagnosed?

Thyroid disorders can be hard to diagnose because their symptoms can be linked to many other health problems. Your doctor will start by taking a medical history and asking if any of your family members has a history of thyroid disorders. Your doctor will also give you a physical exam and check your neck for thyroid nodules. Depending on your symptoms, your doctor may also do other tests, such as:

Blood tests
Testing the level of thyroid stimulating hormone (TSH) in your blood can help your doctor figure out if your thyroid is overactive or underactive. TSH tells your thyroid to make thyroid hormones. Depending on the results, your doctor might order another blood test to check levels of one or both thyroid hormones in your blood. If your doctor suspects an immune system problem, your blood may also be tested for signs of this.

Radioactive iodine uptake test
For this test, you swallow a liquid or capsule containing a small dose of radioactive iodine (radioiodine). The radioiodine collects in your thyroid because your thyroid uses iodine to make thyroid hormones. Then, a probe placed over your thyroid measures the amount of radioiodine in your thyroid. A high uptake of radioiodine means that your thyroid is making too much of the thyroid hormones. A low uptake of radioiodine means that your thyroid is not making enough of the thyroid hormones.

Thyroid scan
A thyroid scan usually uses the same radioiodine dose that was given by mouth for your uptake test. You lie on a table while a special camera creates an image of your thyroid on a computer screen. This test may be helpful in showing whether a thyroid nodule is cancerous. Three types of nodules show up in this test:

• Thyroid nodules that take up excess radioiodine are making too much of the thyroid hormones, causing hyperthyroidism. These nodules show up brightly on the scan and are called "hot" nodules.
• Thyroid nodules that take up the same amount of radioiodine as normal thyroid cells are making a normal amount of thyroid hormones. These are called "warm" nodules.
• Thyroid nodules that do not take up radioiodine are not making thyroid hormones. They appear as defects or holes in the scan and are called "cold" nodules.

Hot nodules are almost never cancerous. A small percentage of warm and cold nodules are cancerous.

Thyroid fine needle biopsy
This test is used to see if thyroid nodules have normal cells in them. Local anesthetic may be used to numb an area on your neck. Then, a very thin needle is inserted into the thyroid to withdraw some cells and fluid. The withdrawal of cells and fluid is called a biopsy (BY-op-see). A special type of doctor called a pathologist (path-ol-uh-jist) examines the cells under a microscope to see if they are abnormal. Abnormal cells could mean thyroid cancer.

Thyroid ultrasound
The thyroid ultrasound uses sound waves to create a computer image of the thyroid. This test can help your doctor tell what type of nodule you have and how large it is. Ultrasound may also be helpful in detecting thyroid cancer, although by itself it cannot be used to diagnose thyroid cancer. You may have repeat thyroid ultrasounds to see if your nodule is growing or shrinking.

How is hyperthyroidism treated?

Your doctor's choice of treatment will depend on the cause of your hyperthyroidism and how severe your symptoms are. Treatments include:

• Antithyroid medicines block the thyroid's ability to make new thyroid hormones. These drugs do not cause permanent damage to the thyroid.
• Radioiodine damages or destroys the thyroid cells that make thyroid hormones. For this treatment, your doctor will give you a higher dose of a different type of radioiodine than is used for the radioiodine uptake test or the thyroid scan.
• Surgery to remove most of the thyroid.
• Beta (BAY-tuh)-blockers are medicines that block the effects of thyroid hormones on the body. These medicines can be helpful in slowing your heart rate and reducing other symptoms until one of the other forms of treatment can take effect. Beta-blockers do not reduce the amount of thyroid hormones that are made.

If your thyroid is destroyed by radioiodine or removed through surgery, you must take thyroid hormone pills for the rest of your life. These pills give your body the thyroid hormones that your thyroid would normally make.

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How is hypothyroidism treated?

Hypothyroidism is treated with medicine to supply the body with the thyroid hormones it needs to function right. The most commonly used medicine is levothyroxine (le-voh-thy-ROK-suhn). This is a man-made form of T4. It is exactly the same as the T4 that your thyroid makes. When you take T4, your body makes the T3 it needs from the T4 in the pills. A man-made form of T3, called liothyronine (ly-oh-THY-roh-neen), is also available. Some doctors and patients prefer a combination of T4 and T3 or T3 by itself. Most patients with hypothyroidism will need to be on thyroid hormone treatment for the rest of their lives.

How are thyroid nodules treated?

Treatment depends on the type of nodule or nodules that you have. Treatments include:

• Watchful waiting. If your nodule is not cancerous, your doctor may decide to simply watch your condition. This involves giving you regular physical exams, blood tests, and perhaps thyroid ultrasound tests. If your nodule does not change, you may not need further treatment.
• Radioiodine. If you have nodules that are making too much of the thyroid hormones, radioiodine treatment may be used. The radioiodine is absorbed by the thyroid nodules, and it causes them to shrink and make smaller amounts of thyroid hormones.
• Alcohol ablation (uh-BLAY-shuhn). In this procedure, your doctor injects alcohol into thyroid nodules that make too much of the thyroid hormones. The alcohol shrinks the nodules and they make smaller amounts of thyroid hormones.
• Surgery. All nodules that are cancerous are surgically removed. Sometimes, nodules that are not cancerous but are big enough to cause problems breathing or swallowing are also surgically removed.

How is thyroid cancer treated?

• Surgery. The main treatment for thyroid cancer is to remove the entire thyroid gland, or as much of it as can be safely removed. Often, surgery alone will cure the thyroid cancer, especially if the cancer is small.
• Radioiodine. A large dose of radioiodine will destroy thyroid cancer cells with little or no damage to other parts of the body.

How is goiter treated?

The treatment for goiter depends on the cause of the goiter. If your goiter is caused by not getting enough iodine, you may be given an iodine supplement to swallow and T4 hormone, if need be. Other treatments include:

• Radioiodine to shrink the goiter, especially if parts of the goiter are overactive
• Surgery to remove part or almost all of the thyroid

Are there any complementary or alternative treatments for thyroid problems?

To date, the NIH doesn’t know enough about alternative treatments for thyroid problems. Your doctor can explain which treatment options are best for you. 

Can thyroid disorders cause problems with pregnancy?

Both hyperthyroidism and hypothyroidism can make it more difficult for you to become pregnant.

Hyperthyroidism that is not properly treated during pregnancy can cause:

• Early labor and premature babies
• Preeclampsia (pre-ee-CLAMP-see-uh), a serious condition starting after 20 weeks of pregnancy that causes high blood pressure and problems with the kidneys and other organs
• Fast heart rate of the developing baby
• Smaller babies
• Stillbirths

Women who have hypothyroidism that is not diagnosed or properly treated during pregnancy may be at increased risk for:

• Anemia (lower than normal number of healthy red blood cells)
• Preeclampsia
• Low birth weight babies
• Problems with brain development in the baby
• Abnormal bleeding after giving birth

If you are pregnant or are thinking about becoming pregnant, ask your doctor if you need a thyroid test. This is especially true if you or a family member has a history of thyroid problems or conditions related to thyroid disorders, including:

• Prematurely gray hair
• White patches on the skin
• Type 1 diabetes

Can I exercise if I have a thyroid problem?

Some people with thyroid problems may find exercise difficult. It is important to talk to your doctor about the right amount of physical activity for you.

Should I get tested for thyroid diseases?

Ask your doctor or nurse if you need to have a thyroid test. This is especially important if you are of childbearing age, have already had a thyroid problem, or have had surgery or radiotherapy affecting the thyroid gland. You may also be at higher risk if you have:

• Goiter
• Pernicious anemia
• Type 1 diabetes
• Vitiligo
• Prematurely gray hair

At any age, be sure to ask your doctor about any thyroid disorder symptoms you might have.

The above information is from the National Institutes of Health (NIH) and their department of Women’s Health.

Read more online at their websites:

http://womenshealth.gov/publications/our-publications/fact-sheet/thyroid-disease.html

http://www.nlm.nih.gov/medlineplus/thyroiddiseases.html

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Twin to Twin Transfusion Syndrome (TTTS) Awareness Ribbon Angel

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Twin to Twin Transfusion Syndrome, or TTTS, is a disease of the placenta. This condition affects twins or other multiples that share a single placenta containing blood vessels going from one baby to the other.

Blood from the smaller "donor" twin is transferred to the larger "recipient" twin through interconnecting vessels causing an unequal exchange of blood.

The recipient twin is at risk for heart failure receiving too much blood from both the placenta and donor twin, forcing its heart to work harder, while the donor twin is at risk for loss of blood.

Laser surgery may be performed to correct the problem. A laser is endoscopically inserted into the womb to burn and seal the interconnecting blood vessels, restoring the normal flow of blood. Following treatment, the babies are regularly monitored.

The above information is from the NIH http://www.nlm.nih.gov/medlineplus/ency/anatomyvideos/000132.htm.

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Interstitial Cystitis (IC) / Painful Bladder Syndrome (PBS) Awareness uses a Turquoise Ribbon

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What is IC/PBS?

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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 may sometimes experience pain during vaginal intercourse.

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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 terms bladder pain syndrome (BPS) or 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 (NIDDK).

In IC/PBS, the bladder wall may be irritated and become scarred or stiff. Glomerulations— pinpoint bleeding—often appear on the bladder wall. Hunner’s ulcers—patches of broken skin found on the bladder wall—are present in 10 percent of people with IC.

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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 when measured under anesthesia or during urologic testing. 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 more common in women than in men. 

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.

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.

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How is IC/PBS diagnosed?

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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. In women, endometriosis is a common cause of pelvic pain. 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 of urination
• 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 and urethra, and distention of the bladder under anesthesia.

Urinalysis and Urine Culture

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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.

Culture of Prostate Secretions

Although not commonly done, in men without a history of culture-documented urinary tract infections, the doctor might obtain prostatic fluid and examine it for signs of a prostate infection, which can then be treated with antibiotics.

Cystoscopy under Anesthesia with Bladder Distention

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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.

Biopsy

A biopsy is a tissue sample that can be examined with a microscope. Tissue samples of the bladder and urethra may be removed during a cystoscopy. A biopsy helps rule out bladder cancer.

What are the treatments for IC/PBS?

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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

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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 4 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.

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The only drug approved by the U.S. Food and Drug Administration (FDA) for bladder instillation is dimethyl sulfoxide (Rimso-50), also called DMSO. 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 garliclike 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 milligrams (mg), three times a day. Patients may not feel relief from IC pain for the first 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. If 6 months of Elmiron therapy provides no benefit, it is reasonable to stop the drug.

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. Because Elmiron has mild blood-thinning effects, it should be discontinued prior to planned surgery.

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.

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 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.

Smoking

Many people feel smoking makes their symptoms worse. How the by-products of tobacco that are excreted in the urine affect IC/PBS is unknown. Smoking, however, is a major cause of bladder cancer. One of the best things smokers can do for their bladder and their overall health is to quit.

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.

Physical Therapy

New evidence indicates that certain types of physical therapy, when administered by an experienced physical therapist, may improve IC/PBS symptoms. Patients should discuss this option with their health care provider.

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—also called 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.

Removing the bladder is not always done in patients with severe disease. Some urologists recommend rerouting urine to a piece of bowel connected to the abdominal wall. Urine is then collected in an external bag that is emptied periodically. While this procedure may or may not improve pelvic pain, it can decrease frequency and improve quality of life for patients who experience frequent urges to urinate.

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 maintains a list of support groups that can viewed at www.ichelp.org

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 NIDDK’s investment in scientifically meritorious IC/PBS research across the United States 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 epidermal growth factor-like growth factor (HB-EGF) and anti-proliferative factor (APF).

In 2003, the ICCTG became the ICCRN, which has conducted additional clinical trials over a second 5-year period. One of these trials studied the effectiveness of amitriptyline 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. The study could not prove that amitriptyline was effective in treating IC/PBS, although many patients seemed to benefit from a combination of amitriptyline and behavioral modification with stress reduction.

In 2008, the NIDDK launched the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network. The MAPP Research Network is designed to take a collaborative, whole-body approach to the study of IC/PBS and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS). This program brings together experts from nonurologic fields such as neurology and epidemiology as well as traditional urologic researchers to study IC/PBS and CP/CPPS in the context of other chronic pain syndromes such as fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome. While traditional research has focused on the bladder as the source of pain in IC/PBS and on the prostate as the source of pain in CP/CPPS, researchers now believe that an underlying cause common to all chronic pain syndromes may lie somewhere outside these specific organs. The MAPP Research Network includes six Discovery Sites that will conduct individual and collaborative trials and two Core Sites for data and tissue banking and analysis. The program is scheduled to be funded for 5 years.

Participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research. For information about current studies, visit www.ClinicalTrials.gov.

The above information is from National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), which is a division of the National Institutes of Health (NIH).

Read more on the NIDDK website at http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/

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