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Thursday, November 7, 2019

Interstitial Cystitis (IC)

Interstitial Cystitis (IC)





Image Source: HERE





According to the Mayo Clinic,

"Interstitial cystitis (in-tur-STISH-ul sis-TIE-tis) is a chronic condition causing bladder pressure, bladder pain and sometimes pelvic pain. The pain ranges from mild discomfort to severe pain. The condition is a part of a spectrum of diseases known as painful bladder syndrome.
Your bladder is a hollow, muscular organ that stores urine. The bladder expands until it's full and then signals your brain that it's time to urinate, communicating through the pelvic nerves. This creates the urge to urinate for most people.
With interstitial cystitis, these signals get mixed up — you feel the need to urinate more often and with smaller volumes of urine than most people.
Interstitial cystitis most often affects women and can have a long-lasting impact on quality of life. Although there's no cure, medications and other therapies may offer relief.

Symptoms

The signs and symptoms of interstitial cystitis vary from person to person. If you have interstitial cystitis, your symptoms may also vary over time, periodically flaring in response to common triggers, such as menstruation, sitting for a long time, stress, exercise and sexual activity.
Interstitial cystitis signs and symptoms include:
  • Pain in your pelvis or between the vagina and anus in women
  • Pain between the scrotum and anus in men (perineum)
  • Chronic pelvic pain
  • A persistent, urgent need to urinate
  • Frequent urination, often of small amounts, throughout the day and night (up to 60 times a day)
  • Pain or discomfort while the bladder fills and relief after urinating.
  • Pain during sexual intercourse.
Symptoms severity is different for everyone, and some people may experience symptom-free periods.
Although signs and symptoms of interstitial cystitis may resemble those of a chronic urinary tract infection, there's usually no infection. However, symptoms may worsen if a person with interstitial cystitis gets a urinary tract infection.

When to see a doctor

If you're experiencing chronic bladder pain or urinary urgency and frequency, contact your doctor.






Image Source: HERE



Causes

The exact cause of interstitial cystitis isn't known, but it's likely that many factors contribute. For instance, people with interstitial cystitis may also have a defect in the protective lining (epithelium) of the bladder. A leak in the epithelium may allow toxic substances in urine to irritate your bladder wall.
Other possible but unproven contributing factors include an autoimmune reaction, heredity, infection or allergy.

Risk factors

These factors are associated with a higher risk of interstitial cystitis:
  • Your sex. Women are diagnosed with interstitial cystitis more often than men. Symptoms in men may mimic interstitial cystitis, but they're more often associated with an inflammation of the prostate gland (prostatitis).
  • Your skin and hair color. Having fair skin and red hair has been associated with a greater risk of interstitial cystitis.
  • Your age. Most people with interstitial cystitis are diagnosed during their 30s or older.
  • Having a chronic pain disorder. Interstitial cystitis may be associated with other chronic pain disorder, such as irritable bowel syndrome or fibromyalgia.

Complications

Interstitial cystitis can result in a number of complications, including:
  • Reduced bladder capacity. Interstitial cystitis can cause stiffening of the bladder wall, which allows your bladder to hold less urine.
  • Lower quality of life. Frequent urination and pain may interfere with social activities, work and other activities of daily life.
  • Sexual intimacy problems. Frequent urination and pain may strain your personal relationships, and sexual intimacy may suffer.
  • Emotional troubles. The chronic pain and interrupted sleep associated with interstitial cystitis may cause emotional stress and can lead to depression.

Diagnosis

The following may be helpful in diagnosing interstitial cystitis:
  • Medical history and bladder diary. Your doctor will ask you to describe your symptoms and may ask you to keep a bladder diary, recording the volume of fluids you drink and the volume of urine you pass.
  • Pelvic exam. During a pelvic exam, your doctor examines your external genitals, vagina and cervix and feels your abdomen to assess your internal pelvic organs. Your doctor may also examine your anus and rectum.
  • Urine test. A sample of your urine is analyzed for signs of a urinary tract infection.
  • Cystoscopy. Your doctor inserts a thin tube with a tiny camera (cystoscope) through the urethra, showing the lining of your bladder. Your doctor may also inject liquid into your bladder to measure your bladder capacity. Your doctor may perform this procedure, known as hydrodistention, after you've been numbed with an anesthetic medication to make you more comfortable.
  • Biopsy. During cystoscopy under anesthesia, your doctor may remove a sample of tissue (biopsy) from the bladder and the urethra for examination under a microscope. This is to check for bladder cancer and other rare causes of bladder pain.
  • Urine cytology. Your doctor collects a urine sample and examines the cells to help rule out cancer.
  • Potassium sensitivity test. Your doctor places (instills) two solutions — water and potassium chloride — into your bladder, one at a time. You're asked to rate on a scale of 0 to 5 the pain and urgency you feel after each solution is instilled. If you feel noticeably more pain or urgency with the potassium solution than with the water, your doctor may diagnose interstitial cystitis. People with normal bladders can't tell the difference between the two solutions.

More Information

Treatment

No simple treatment eliminates the signs and symptoms of interstitial cystitis, and no one treatment works for everyone. You may need to try various treatments or combinations of treatments before you find an approach that relieves your symptoms.

Physical therapy

Working with a physical therapist may relieve pelvic pain associated with muscle tenderness, restrictive connective tissue or muscle abnormalities in your pelvic floor.

Oral medications

Oral medications that may improve the signs and symptoms of interstitial cystitis include:
  • Nonsteroidal anti-inflammatory drugs, such as ibuprofen (Advil, Motrin IB, others) or naproxen sodium (Aleve), to relieve pain.
  • Tricyclic antidepressants, such as amitriptyline or imipramine (Tofranil), to help relax your bladder and block pain.
  • Antihistamines, such as loratadine (Claritin, others), which may reduce urinary urgency and frequency and relieve other symptoms.
  • Pentosan polysulfate sodium (Elmiron), which is approved by the Food and Drug Administration specifically for treating interstitial cystitis. How it works is unknown, but it may restore the inner surface of the bladder, which protects the bladder wall from substances in urine that could irritate it. It may take two to four months before you begin to feel pain relief and up to six months to experience a decrease in urinary frequency.

Nerve stimulation

Nerve stimulation techniques include:
  • Transcutaneous electrical nerve stimulation (TENS). With TENS, mild electrical pulses relieve pelvic pain and, in some cases, reduce urinary frequency. TENS may increase blood flow to the bladder. This may strengthen the muscles that help control the bladder or trigger the release of substances that block pain.
    Electrical wires placed on your lower back or just above your pubic area deliver electrical pulses — the length of time and frequency of therapy depends on what works best for you.
  • Sacral nerve stimulation. Your sacral nerves are a primary link between the spinal cord and nerves in your bladder. Stimulating these nerves may reduce urinary urgency associated with interstitial cystitis.
    With sacral nerve stimulation, a thin wire placed near the sacral nerves sends electrical impulses to your bladder, similar to what a pacemaker does for your heart. If the procedure decreases your symptoms, you may have a permanent device surgically implanted. This procedure doesn't manage pain from interstitial cystitis, but may help to relieve some symptoms of urinary frequency and urgency.

Bladder distention

Some people notice a temporary improvement in symptoms after cystoscopy with bladder distention. Bladder distention is the stretching of the bladder with water. If you have long-term improvement, the procedure may be repeated.

Medications instilled into the bladder

In bladder instillation, your doctor places the prescription medication dimethyl sulfoxide (Rimso-50) into your bladder through a thin, flexible tube (catheter) inserted through the urethra.
The solution sometimes is mixed with other medications, such as a local anesthetic, and remains in your bladder for about 15 minutes. You urinate to expel the solution.
You might receive dimethyl sulfoxide — also called DMSO — treatment weekly for six to eight weeks, and then have maintenance treatments as needed — such as every couple of weeks, for up to one year.
A newer approach to bladder instillation uses a solution containing the medications lidocaine, sodium bicarbonate, and either pentosan or heparin.

Surgery

Doctors rarely use surgery to treat interstitial cystitis because removing the bladder doesn't relieve pain and can lead to other complications.
People with severe pain or those whose bladders can hold only very small volumes of urine are possible candidates for surgery, but usually only after other treatments fail and symptoms affect quality of life. Surgical options include:
  • Fulguration. This minimally invasive method involves insertion of instruments through the urethra to burn off ulcers that may be present with interstitial cystitis.
  • Resection. This is another minimally invasive method that involves insertion of instruments through the urethra to cut around any ulcers.
  • Bladder augmentation. In this procedure, a surgeon increases the capacity of your bladder by putting a patch of intestine on the bladder. However, this is performed only in very specific and rare instances. The procedure doesn't eliminate pain and some people need to empty their bladders with a catheter many times a day.

Lifestyle and home remedies

Some people with interstitial cystitis find symptom relief from these strategies:
  • Dietary changes. Eliminating or reducing foods in your diet that irritate your bladder may help to relieve the discomfort of interstitial cystitis.
    Common bladder irritants — known as the "four Cs" — include: carbonated beverages, caffeine in all forms (including chocolate), citrus products and food containing high concentrations of vitamin C. Consider avoiding similar foods, such as tomatoes, pickled foods, alcohol and spices. Artificial sweeteners may aggravate symptoms in some people.
    If you think certain foods may irritate your bladder, try eliminating them from your diet. Reintroduce them one at a time and pay attention to which, if any, worsen symptoms.
  • Bladder training. Bladder training involves timed urination — going to the toilet according to the clock rather than waiting for the need to go. You start by urinating at set intervals, such as every half-hour — whether you have to go or not. Then you gradually wait longer between bathroom visits.
    During bladder training, you may learn to control urinary urges by using relaxation techniques, such as breathing slowly and deeply or distracting yourself with another activity.
    These self-care measures also may help:
  • Wear loose clothing. Avoid belts or clothes that put pressure on your abdomen.
  • Reduce stress. Try methods such as visualization and biofeedback.
  • If you smoke, stop. Smoking may worsen any painful condition, and smoking contributes to bladder cancer.
  • Exercise. Easy stretching exercises may help reduce interstitial cystitis symptoms.

Alternative medicine

Two complementary and alternative therapies show some promise in treating interstitial cystitis:
  • Guided imagery. This type of therapy employs visualization and direct suggestions using imagery to help you imagine healing, with the hope that the body will follow the mind's suggestions.
  • Acupuncture. During an acupuncture session, a practitioner places numerous thin needles in your skin at specific points on your body. According to traditional Chinese medicine, precisely placed acupuncture needles relieve pain and other symptoms by rebalancing the flow of life energy. Western medical practitioners tend to believe that acupuncture boosts the activity of your body's natural painkillers.
These treatments have not been well-studied for interstitial cystitis, so be sure to discuss the use of these therapies with your doctor.

More Information

Coping and support

Interstitial cystitis can worsen your quality of life. Support from family and friends is important, but because the condition is a urinary problem, you may find the topic difficult to discuss.
Find a supportive doctor who is concerned about your quality of life as well as your condition. Seek someone who will work with you to help relieve your urinary frequency, urgency and bladder pain.
You might also benefit from joining a support group. A support group can provide sympathetic listening and useful information. Ask your doctor for information on support groups or see the Interstitial Cystitis Association on the web.

Preparing for your appointment

You may be asked to keep a bladder diary for a few days to record information, such as how often you urinate and how much and what kinds of fluid you consume.
For more testing, you may be referred to a specialist in urinary disorders (urologist) or urinary disorders in women (urogynecologist).

What you can do

To get the most from your visit to the doctor, prepare in advance:
  • Write down any symptoms you're experiencing. Include all of your symptoms, even if you don't think they're related.
  • Make a list of any medications, vitamins or other supplements you take. Many over-the-counter supplements can irritate the urinary tract. Also note the doses and how often you take the medication or supplements.
  • Have a family member or close friend go with you. You may be given a lot of information at your visit, and it can be difficult to remember everything.
  • Take a notepad or an electronic device with you. Use it to note important information during your visit.
  • Prepare a list of questions to ask your doctor. List your most important questions first, in case time runs out.
For interstitial cystitis, some basic questions to ask your doctor include:
  • Will my symptoms eventually go away?
  • What kind of tests might I need?
  • Will changing my diet help with my symptoms?
  • Could the medicines I take be aggravating my condition?
  • Are there any medications that would help ease my symptoms?
  • Will I need surgery?
Make sure that you understand what your doctor tells you. Don't hesitate to ask your doctor to repeat information or to ask follow-up questions for clarification.

What to expect from your doctor

Be prepared to answer questions from your doctor. Potential questions your doctor might ask include:
  • How often do you feel the urge to urinate with little or no warning?
  • Do you feel the urge to urinate immediately after you've urinated?
  • Do you ever urinate less than two hours after you finished urinating?
  • Do you wake up at night to urinate?
  • Do you have pain or burning in your bladder?
  • Do you feel pain in your abdomen or pelvis?
  • Are you currently sexually active?
  • How much do your symptoms bother you?"





Image Source: HERE








 According to Urology Care Foundation,

"What is Interstitial Cystitis/Bladder Pain Syndrome?



Interstitial cystitis (IC)/bladder pain syndrome (BPS) is a chronic bladder health issue. It is a feeling of pain and pressure in the bladder area. Along with this pain are lower urinary tract symptoms which have lasted for more than 6 weeks, without having an infection or other clear causes.

Symptoms range from mild to severe. For some patients the symptoms may come and go, and for others they don't go away. IC/BPS is not an infection, but it may feel like a bladder infection. Women with IC/BPS may feel pain when having sex.  The more severe cases of IC/BPS can affect your life and your loved ones.  Some people with IC/BPS have other health issues such as irritable bowel syndrome, fibromyalgia, and other pain syndromes.  


The bladder and kidneys are part of the urinary system  , the organs in our bodies that make, store, and pass urine. You have 2 kidneys that make urine.  Then urine is stored in the bladder.  The muscles in the lower part of your abdomen hold your bladder in place.



How the Urinary System Works 


When it is not full of urine, the bladder is relaxed.  When nerve signals in your brain let you know that your bladder is getting full, you feel the need to pass urine.  If your bladder is working normally, you can put off urination for some time.    Once you are ready to pass urine, the brain sends a signal to the bladder.  Then the bladder muscles squeeze (or "contract").  This forces the urine out through the urethra, the tube that carries urine from your body.  The urethra has muscles called sphincters.  They help keep the urethra closed so urine doesn't leak before you're ready to go to the bathroom.  These sphincters relax when the bladder contracts.


Symptoms



Pain

The symptoms of IC/BPS vary for each patient, but the most common sign is pain (often with pressure). Patients with IC/BPS may have bladder pain that gets worse as the bladder fills. Some patients feel pain in other areas in addition to the bladder, such as the urethra, lower abdomen, lower back, or the pelvic or perineal area (in women, behind the vagina and in men, behind the scrotum). Women may feel pain in the vulva or the vagina, and men may feel the pain in the scrotum, testicle, or penis. The pain may be constant or may come and go.

Frequency

IC/BPS sometimes starts with urinary frequency. Frequency is the need to pass urine more often than normal. The average person urinates no more than 7 times a day. He or she does not have to get up at night more than once to use the bathroom. A patient with IC/BPS often has to urinate frequently both day and night. As frequency becomes more severe, it leads to urgency.

Urgency

Urgency to urinate is a common IC/BPS symptom. Some patients feel an urge that never goes away, even right after voiding. A patient may not notice or see this as a problem. In other cases, the onset is much more dramatic, with severe symptoms occurring within days, weeks or months.


Many patients with IC/BPS can point to certain things that make their symptoms worse. For some, their symptoms are made worse by certain foods or drinks. Many patients find that symptoms are worse if they are under stress (either physical or mental). For women, the symptoms may vary with their period. Both men and women with IC/BPS can have sexual problems due to this health issue. Women may have pain during sex because the bladder is right in front of the vagina. Men may have painful orgasm or pain the next day. It is unusual to experience leaking of urine with this disorder, and urinary leaking might be a sign of another problem.




Who Gets IC/BPS?

Because there is no standard technique to diagnose IC/BPS, it is often hard to estimate the number of people affected. IC/BPS is typically 2 to 3 times more in common in women than in men, and data have shown the risk of IC/BPS increases with age.
The current estimate is that 1 to 4 million men and 3 to 8 million women have symptoms of IC/BPS. But the difference between men and women may not really be as high as we think, because some men diagnosed with "prostatitis" (swelling of the gland that makes semen in men) or similar conditions with different labels may really have IC/BPS. At this time, there is no evidence that stress causes IC/BPS in the first place. However, it is well-known that if a person has IC, physical or mental stress can make the symptoms worse.




How IC/BPS Can Affect Your Life

IC/BPS can get in the way of your social life, exercise and sleep, and can cause a great deal of distress. Without treatment, IC/BPS symptoms make it hard to get through your day or even be able to work. IC/BPS may affect your relationship with your spouse and family. It can also rob you of a good night's sleep. Too little sleep will leave you tired and unhappy.

Causes



Experts do not know exactly what causes IC/BPS, but there are many theories, such as:
  • A defect in the bladder tissue, which may allow irritating substances in the urine to penetrate the bladder.
  • A specific type of inflammatory cell, called a mast cell. This cell releases histamine and other chemicals that lead to IC/BPS symptoms.
  • Something in the urine that damages the bladder.
  • Changes in the nerves that carry bladder sensations so pain is caused by events that are not normally painful (such as bladder filling).
  • The body's immune system attacks the bladder. This is similar to other autoimmune conditions..
No specific behaviors (such as smoking) are known to increase your risk of IC. Having a family member with IC/BPS may increase your risk of getting IC/BPS. Patients with IC/BPS may have a substance in the urine that inhibits the growth of cells in the bladder tissue. So, some people may be more likely to get IC/BPS after an injury to the bladder, such as an infection.


Diagnosis



At this time, there is no medical test that can say a person has IC/BPS. Also, there is no test to say a person does not have IC/BPS. To make a diagnosis, your health care provider will first decide whether the symptoms are typical of IC/BPS. Next, they need to rule out other health issues that might be causing the symptoms. Some believe that IC/BPS is present if a patient has symptoms and no other cause for those symptoms is found. Others believe that more tests are needed to find out whether the patient has IC/BPS.
Below are some ways your health care provider may find out if you have IC/BPS:




Medical History

Your health care provider will ask you a number of questions about:
  • symptoms you are having
  • how long you have had the symptoms
  • how symptoms are changing your life
  • past health problems
  • current health problems
  • over-the-counter and prescription drugs you are taking
  • your diet, and about how much and what kinds of liquids you drink during the day




Physical and Neurological Exam

Your health care provider will examine you to look for the cause of your symptoms. In women, the physical exam will likely include your abdomen, the organs in your pelvis, and your rectum. In men, a physical exam will include your abdomen, prostate, and rectum. Your health care provider may also do a neurological exam to rule out any other problems. Patients with IC/BPS may have other mental health and/or anxiety disorders which may be linked to their condition.




Baseline Pain and Voiding Tests

Since the hallmark sign of IC/BPS is pain, your health care provider will conduct tests and ask you to fill out a series of questionnaires to find out your baseline pain value. The goal of the evaluation is to find pain location(s), intensity, and characteristics, and to identify factors that make pain or discomfort better or worse. Your health care provider will also ask how often you void.. A very low voiding frequency or high voided volume should prompt your health care provider to look for some other urological condition beside IC/BPS.




Other Tests

Your health care provider may run other tests to rule out health issues that may seem like IC/BPS. These include:



Urodynamic evaluation: This involves filling the bladder with water through a small catheter (tube to drain fluid from the body). This measures bladder pressures as the bladder fills and empties. In patients with IC/BPS the bladder has a small capacity and perhaps pain with filling.
Cystoscopy
Cystoscopy



Cystoscopy: Using a special tool, your doctor looks inside the bladder. This test can rule out other problems such as cancer. The doctor can see actual ulcers through the cystoscope in some patients with IC/BPS. If a person has symptoms of IC/BPS and cystoscopy shows ulcers, the diagnosis is fairly certain. Cystoscopy can also be performed in the operating room. If bladder stones, tumors or ulcers are seen during cystoscopy, the doctor can take care of them at the same time as the bladder biopsy, which is used to rule out other bladder diseases.


At this time, there is no clear answer about the best way to diagnose IC/BPS. However, if a patient has typical symptoms and a negative urine exam showing no infection or blood, then IC/BPS should be suspected.


Treatment



No single treatment works for all people with IC/BPS.  Treatment must be chosen for each patient based on symptoms.  Patients usually try different treatments (or combinations of treatments) until good symptom relief occurs.  It is important to know that none of these IC/BPS treatments works right away.  It usually takes weeks to months before symptoms improve.  Even with successful treatment, the condition may not be cured.  It is simply in remission.  But, most patients can get significant relief of their symptoms and lead a normal life with treatment.  


Most treatments are aimed at symptom control.  IC/BPS treatment is often done in phases with constant monitoring of your pain and quality of life.  It is important to talk to your health care provider about how your treatments are working so that together you can find the best treatment option for you.   






First Phase: Lifestyle Changes

Lifestyle changes, known as "behavioral therapy," are often the first treatments used to manage IC/BPS.  In behavioral therapy, you make some changes in the way you live day-to-day.  This may include changing your diet, or practicing methods that may help control your symptoms.  Most patients don't get rid of all their symptoms with lifestyle changes.  But many do have fewer symptoms using these types of treatments.

Manipulative Physical Therapy

Patients with IC/BPS often have tenderness and/or pain in the pelvic floor area, and sometime manipulative physical therapy can reduce symptoms.  There is evidence that physical therapy exercises to strengthen the pelvic floor muscles do not improve symptoms, and often make them worse, so activities such as Kegel exercises are not recommended for patients with IC/BPS.

Limiting Stress

Emotional and mental stress can worsen IC/BPS symptoms.  Patients are encouraged to come up with coping methods to deal with family, work and/or past painful experiences, and may need to seek additional help to develop the best coping strategies to help manage their pain.

Limiting Certain Foods and Drinks

Most (but not all) people with IC/BPS find that certain foods make their symptoms worse. There are 4 foods that patients most often find irritating to their bladder:
  • citrus fruits
  • tomatoes
  • chocolate
  • coffee
Other foods that bother the bladder in many patients are:
  • alcoholic drinks
  • caffeinated drinks
  • spicy foods
  • some carbonated drinks

Elimination Diet

The list of foods that have been said to affect IC/BPS is quite long, but not all foods affect all patients the same way. Each patient must find out how foods affect his or her own bladder. The simplest way to find out whether any foods bother your bladder is to try an "elimination diet" for 1 to 2 weeks. On an elimination diet, you stop eating all of the foods that could irritate your bladder. IC/BPS food lists are available from many sources (www.ichelp.org or www.ic-network.com).


If your bladder symptoms improve while you are on the elimination diet, this means that at least 1 of the foods was irritating your bladder. The next step is to find out exactly which foods cause bladder problems for you. After 1 to 2 weeks on the elimination diet, try eating 1 food from the IC/BPS food list. If this food does not bother your bladder within 24 hours, this food is likely safe and can be added back into your regular diet. The next day, try eating a second food from the list, and so on.  In this way, you will add the foods back into your diet one at a time, and your bladder symptoms will tell you if any food causes problems for you. Be sure to add only 1 new food to your diet each day. If you eat a banana, strawberries and tomatoes all in the same day, and the IC/BPS symptoms are worse that evening, you will not know which of the 3 foods caused the symptoms to flare up.



Second Phase: Prescription Drugs

When lifestyle changes do not help enough, your health care provider may ask you to try a prescription drug.  You may take the drug alone or along with behavioral therapy.    The 2 types of prescription drugs that may be recommended are, oral and intravesical drugs.  There are many types of oral drugs, and the side effects range from drowsiness to upset stomach.  Intravesical prescription drugs are placed directly into the bladder with a catheter.    Two treatments are approved by the U.S. Food and Drug Administration (FDA) to treat IC/BPS:
  1. Oral Pentosan Polysulfate

No one knows exactly how this drug works for IC. Many people think that it builds and restores the protective coating of the bladder tissue. It may also help by decreasing swelling or by other actions. Possible side effects are not common, but may include nausea, diarrhea and gastric distress. A small percentage of people may have temporary hair loss. It often takes at least 3 to 6 months of treatment with this drug before you notice improvement in symptoms. It is effective in relieving pain in about 30 out of every 100 patients.  
  1. Dimethyl Sulfoxide (DMSO)

The other FDA approved treatment is the placement of dimethyl sulfoxide (DMSO) into the bladder through a catheter. This is usually done once a week for 6 weeks. Some people keep using it now and then as maintenance therapy. No one knows exactly how DMSO helps interstitial cystitis. It may block swelling, decrease pain sensation and remove a type of toxin called "free radicals" that can damage tissue. Some health care providers combine DMSO with other drugs such as heparin or steroids (to decrease inflammation). No studies have tested whether these combinations work better than dimethyl sulfoxide alone. The main side effect is a garlic-like odor that lasts for several hours after using DMSO. For some patients, DMSO can be painful to place into the bladder, but the pain can often be relieved with a local anesthetic.

Hydroxyzine

Hydroxyzine is an antihistamine. It is thought that some patients with IC/BPS have too much histamine in the bladder that leads to pain and other symptoms. An antihistamine may be helpful in treating IC/BPS. The main side effect is drowsiness. However, this may be a benefit because it helps the patient to sleep better at night and get up to pass urine less frequently. The only antihistamines that have been specifically studied for IC/BPS are hydroxyzine and (more recently) cimetidine. It is not known whether other antihistamines also help treat IC/BPS.

Amitriptyline

Amitriptyline is described as an antidepressant, but it actually has many effects that may improve IC/BPS.  It has antihistamine effects, decreases bladder spasms, and slows the nerves that carry pain messages.  Amitriptyline is widely used for other types of chronic pain such as cancer and nerve damage.  The most common side effects are drowsiness, constipation and increased appetite.

Heparin

Heparin is similar to pentosan polysulfate and probably helps the bladder by similar mechanisms.  Heparin must be placed into the bladder with a catheter.  The usual dose is 10,000 to 20,000 units daily or 3 times a week.  Complications are rare because the heparin stays in the bladder only and does not usually affect the rest of the body.



Third Phase: Neuromodulation, Ulcer Cauterization and Injections

Neuromodulation Therapy 

If lifestyle changes and prescription drugs don't work, or pain or side effects interfere with your quality of life, more advanced therapies may be a better choice.  You will most likely be referred to a specialist who treats patients with IC/BPS, such as a urologist.  After reviewing your treatment history, the specialist may suggest neuromodulation therapy. Neuromodulation therapy is the name given to a group of treatments that deliver harmless electrical impulses to nerves to change how they work.

Bladder Ulcer Cauterization

If you have a bladder ulcer, having it cauterized under anesthesia or having steriod injections may give long-term relief for up to a year or more. This treatment can be repeated if necessary.

Injections

Some injections of Botox® can be given if other treatments have not provided adequate symptom control and there is no improvement in quality of life.  Small doses of this drug can paralyze muscles.  When injected into the bladder muscle, it may help with the pain of IC/BPS.  This treatment can wear off, and you may need to have another treatment 6 to 9 months after the first injection.  Your health care provider should follow you closely to watch for complications, including difficulty in passing urine.




Fourth Phase: Cyclosporine

When other treatments have not been successful, cyclosporine can be used.  You should discuss this drug with your health care provider to decide if your symptoms justify the risks.  There are many side effects, and because it is an immunosuppressant, it can reduce your ability to fight disease.



Fifth Phase: Surgery

Major surgery should be reserved for patients with severe, unresponsive disease, and who are willing to accept the risks and lifelong changes associated with surgery. Surgery can be offered to patients with severely limited bladder capacity or severe symptoms that have not responded to other therapies. Most patients do not require major surgery for this condition.

After Treatment



After Initial Treatment

Most patients need to continue treatment indefinitely or the symptoms return.  Some patients have flare-ups of symptoms even while on treatment.  In some patients the symptoms gradually improve and even disappear.
Some patients do not respond to any IC/BPS therapy.  However, with pain management, they can still have significant improvement in quality of life.  Pain management can include other drugs, acupuncture, and other non-drug therapies. Professional pain management may often be helpful in more severe cases.  
Although most patients will find that their symptoms improve as they are treated for IC, not all patients will become fully symptom-free.  Many patients still have to pass urine more often than normal, or will have some degree of persistent discomfort and/or have to avoid certain foods or activities that make symptoms worse.

Can IC/BPS Be Cured?

It is possible for IC/BPS symptoms to come back even if the disease has been in remission for a long time.  It is not known what causes a recurrence.  Also, there is no known guaranteed way to prevent recurrences.  Patients can try to prevent the return of symptoms by:
  • staying on their medical treatments even after remission
  • avoiding certain foods that may irritate the bladder
  • avoiding certain activities or stresses that may make IC/BPS worse.
The specific foods or activities that affect IC/BPS are different for different patients, and so each person has to form his/her own individual plan."




Image Source: HERE




 I found a great source on IC at: https://www.ichelp.org/about-ic/


It has a lot of great information about IC in men, women, and children.


"Interstitial cystitis (in-ter-stish-uhl sĭ-stī’tĭs), or as we call it, IC, is a condition that consists of recurring pelvic pain, pressure, or discomfort in the bladder and pelvic region, often associated with urinary frequency (needing to go often) and urgency (feeling a strong need to go).
The Interstitial Cystitis Association (ICA) advocates for research dedicated to discovery of a cure and better treatments, raises awareness, and serves as a central hub for the healthcare providers, researchers and millions of patients who suffer with constant urinary urgency and frequency and extreme bladder pain called IC, or interstitial cystitis.

What is Interstitial Cystitis?

Interstitial Cystitis is a chronic bladder condition affecting 4 to 12 million people in the US. We often say that interstitial cystitis is as hard to say as it is to live with. Trouble saying interstitial cystitis? It is also called IC, painful bladder syndrome (PBS), bladder pain syndrome (BPS), and chronic pelvic pain (CPP).

Causes of IC

The exact cause of interstitial cystitis (IC) remains a mystery, but researchers have identified a number of different factors that may contribute to the development of the condition.

Symptoms of IC

Learn about the symptoms of IC and how IC patients may present with varied symptoms.

Diagnosis of IC

IC is difficult to diagnosis and the diagnosis can easily be missed. Get an overview of the diagnostic procedures used by healthcare providers when diagnosing IC. Find out about potential wrong diagnoses and related conditions. Read about promising noninvasive, urine tests!

IC Treatments

There is no cure for IC, but there are effective treatments for controlling many of the symptoms of IC. A combination of therapies is recommended for most patients. Here’s information about diet and other lifestyle techniques, physical therapy, medicines, neurostimulation, and complementary and alternative treatments.

Women & IC

Pregnancy and special considerations for pelvic exams are just some of the issues associated with IC that are unique to women.

Men & IC

Yes, men also get IC! Read about the elements of this condition that are unique to men.

Children & IC

Many IC patients recall having symptoms during childhood. Although similar to adults in the way IC presents in the body, not all treatments carry over from adults to children. Learn more about treatments for children with IC.

La Cistitis Intersticial (IC Information in Spanish)

La cistitis intersticial, o CI, como nosotros la denominamos, es una dolencia que consiste en dolor pélvico recurrente, presión o incomodidad en la vejiga y región pélvica, y que frecuentemente está asociada con la frecuencia urinaria y la urgencia.

IC in Other Languages

IC information in Spanish, Chinese (Simplified), Chinese (Traditional), German, French, Italian, and Japanese.

Associated Conditions

Published studies and patient reports reveal that other chronic conditions occur more frequently in IC patients than in the general population including autoimmune diseases, rheumatic disorders, and
neurologic conditions.

IC Awareness Toolkit

An awareness event is a great way to help other understand more about IC. You’ll find ideas about how to get involved, facts about IC, epidemiology and other statistics, and links to other resources. Get involved! Help everyone Dare to be ICAware!"





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 Another great resource for IC is: https://www.niddk.nih.gov/health-information/urologic-diseases/interstitial-cystitis-painful-bladder-syndrome





"Definition & Facts of Interstitial Cystitis

In this section:

What is IC?

Interstitial cystitis (IC), also called bladder pain syndrome, is a chronic, or long-lasting, condition that causes painful urinary symptoms. Symptoms of IC may be different from person to person. For example, some people feel mild discomfort, pressure, or tenderness in the pelvic area. Other people may have intense pain in the bladder or struggle with urinary urgency, the sudden need to urinate, or frequency, the need to urinate more often.
Health care professionals diagnose IC by ruling out other conditions with similar symptoms.
Researchers don’t know the exact cause of IC. Some researchers believe IC may result from conditions that cause inflammation in various organs and parts of the body.
Severe IC symptoms can affect your quality of life. You may feel like you can’t exercise or leave your home because you have to use the bathroom too often, or perhaps your relationship is suffering because sex is painful.
Working with health care professionals, including a urologist or urogynecologist, along with a pain specialist, may help improve your IC symptoms.

Illustration of the urinary tract and pelvis with close-up cross-sections of the female bladder, urethra, and pelvic floor muscles and the male bladder, prostate, urethra, and pelvic floor muscles.
Interstitial cystitis (IC) can cause pain in your bladder and pelvic area.

How common is IC?

IC is common. The condition may affect between 3 million and 8 million women and between 1 million and 4 million men in the United States.1

Who is more likely to develop IC?

IC can occur at any age, including during childhood, but is most common in adult women and men. About twice as many women are affected as men.1 However, more men may struggle with IC than researchers originally thought.
Some research suggests that women are more likely to develop IC if they have a history of being sexually abused or physically traumatized.2

What other health problems do people with IC have?

Many women with IC are more likely to have other conditions such as irritable bowel syndrome, fibromyalgia NIH external link, and chronic fatigue syndrome NIH external link.3 Allergies and some autoimmune diseases are also associated with IC.4
Vulvodynia, which is chronic pain in the vulva that often causes a burning or stinging feeling, or rawness, is commonly associated with IC.2 Vulvodynia has symptoms that overlap with IC.

What are the complications of IC?

The symptoms of IC—such as urgency, frequency, and pain—may lead you to decrease your physical and social activity and negatively affect your quality of life.
Women with pelvic pain or vulvodynia often have pain during sexual intercourse, which can damage your relationships and self-image. Men also can experience pelvic pain that causes uncomfortable or painful sex. Sometimes sex can increase bladder pain attacks, also called symptom flares.
Sexual complications may cause people to avoid further intimacy, possibly leading to depression and guilt. Like many people who deal with chronic pain, people with IC are more likely to struggle with sleep loss NIH external link due to the frequent need to urinate, and with anxiety and depression NIH external link.5
Medical tests such as pelvic exams and Pap tests NIH external link often are painful for women with IC symptoms, especially those who may have pelvic floor muscle spasm. Don’t avoid these tests. Talk with a health care professional about how to make pelvic exams and Pap tests more comfortable and how often you should have them.

References






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Symptoms & Causes of Interstitial Cystitis

What are the symptoms of IC?

People with interstitial cystitis (IC) have repeat discomfort, pressure, tenderness or pain in the bladder, lower abdomen, and pelvic area. Symptoms vary from person to person, may be mild or severe, and can even change in each person as time goes on.
Symptoms may include a combination of these symptoms:

Urgency

Urgency is the feeling that you need to urinate right now. A strong urge is normal if you haven't urinated for a few hours or if you have been drinking a lot of liquids. With IC, you may feel pain or burning along with an urgent need to urinate before your bladder has had time to fill.

Frequency

Frequency is urinating more often than you think you should need to, given the amount of liquid you are drinking. Most people urinate between four and seven times a day. Drinking large amounts of liquid can cause more frequent urinating. Taking blood pressure medicines called diuretics, or water pills, can also cause more frequent urinating. Some people with IC feel a strong, painful urge to urinate many times a day.

Pain

As your bladder starts to fill, you may feel pain—rather than just discomfort—that gets worse until you urinate. The pain usually improves for a while once you empty your bladder. People with IC rarely have constant bladder pain. The pain may go away for weeks or months and then return. People with IC sometimes refer to an attack of bladder pain as a symptom flare.
Some people may have pain without urgency or frequency. This pain may come from a spasm in the pelvic floor muscles, the group of muscles that is attached to your pelvic bones and supports your bladder, bowel, and uterus or prostate. Pain from pelvic floor muscle spasm may get worse during sex.

What causes IC?

Researchers are working to understand the causes of IC and to find treatments that work. Even though the exact cause of IC is unknown, you may find that certain events or factors start, or trigger, your symptom flares. Symptom flares can make your IC feel worse. Some people have reported that their symptom flares happen when they6
  • are stressed, or have certain emotions, such as anger or sadness
  • have sex
  • have a menstrual cycle
  • have a urinary tract infection
  • urinate or hold urine for too long
  • skip meals or are dehydrated
  • feel changes in the seasons or the weather
  • have allergies
  • go through sudden or bumpy movements
  • take certain medicines or forget to take their medicines
  • wear tight pants and undergarments
  • use laundry detergents with certain chemicals or are in pool water with certain chemicals
  • use certain brands of toilet paper
  • do certain physical activities, like pushing or lifting heavy objects
  • stand for long periods of time
  • have a Pap smear NIH external link
  • take antidepressants NIH external link, sinus medicines, or pain relievers
Talk with your health care professional about flare management. If you know which factors make your symptoms flare, you may wish to avoid them. However, if factors that affect your health—like having sex, having a Pap smear, or taking certain medicines—make your symptom flares occur, talk with your health care professional right away.
You may also want to learn more about which foods and drinks may trigger your symptom flares.









Eating, Diet, & Nutrition for Interstitial Cystitis

Can what I eat or drink relieve or prevent IC?

No research consistently links certain foods or drinks to IC. However, some research strongly suggests a relationship between diet and symptoms. Healthy eating and staying hydrated are important for your overall health, including bladder health.

A man putting apples into a bag at the grocery store
No research links certain foods or drinks to interstitial cystitis, although healthy eating is important for your overall health, including bladder health.
However, some people with IC find that certain foods or drinks trigger or worsen their symptoms. Coffee, soda, alcohol, tomatoes, hot and spicy foods, chocolate, caffeinated beverages, citrus juices and drinks, MSG, and high-acid foods can trigger IC symptoms or make them worse. Some people also note that their symptoms get worse after eating or drinking products with artificial sweeteners, or sweeteners that are not found naturally in foods and beverages. 
Learning which foods trigger your symptoms or make them worse may take some effort. Keep a food diary and note the times you have bladder pain. For example, the diary might show that your symptom flares always happen after you eat tomatoes or oranges. If you find that certain foods make your symptoms worse, your health care professional and dietitian can help you avoid them with an eating plan. Find an expert External link to advise you on how to use nutrition and ingredient information on a food label. You can use this information to help you avoid eating or drinking things that trigger pain in your bladder.
Stopping certain foods and drinks—and then adding them back to what you normally eat and drink one at a time—may help you figure out which foods or drinks, if any, affect your symptoms. Talk with your health care professional about how much liquid you should drink to prevent dehydration based on your health, how active you are, and where you live. Water is the best liquid for bladder health.
Some doctors recommend taking an antacid with meals. This medicine reduces the amount of acid that gets into the urine.




Clinical Trials for Interstitial Cystitis

The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) and other components of the National Institutes of Health (NIH) conduct and support research into many diseases and conditions.

What are clinical trials, and are they right for you?

Clinical trials are part of clinical research and at the heart of all medical advances. Clinical trials look at new ways to prevent, detect, or treat disease. Researchers also use clinical trials to look at other aspects of care, such as improving the quality of life for people with chronic illnesses. Find out if clinical trials are right for you NIH external link.

What clinical trials are open?

Clinical trials that are currently open and are recruiting can be viewed at www.ClinicalTrials.gov NIH external link.


Watch a video of NIDDK Director Dr. Griffin P. Rodgers explaining the importance of participating in clinical trials.







What is the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network?

To better understand the causes of two chronic urinary pain disorders—interstitial cystitis (IC)-also called bladder pain syndrome, and chronic prostatitis/chronic pelvic pain syndrome (CP/CPPS)—the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) of the National Institutes of Health (NIH) established the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network.
The MAPP Research Network moves beyond typical bladder- and prostate-specific research and includes experts across a wide range of disciplines. Using a whole-body approach, MAPP Network scientists are studying the underlying source of symptoms, differing symptom profiles and patterns for patients, and possible connections between IC, CP/CPP, and other chronic conditions that are sometimes seen in IC and CP/CPPS patients, such as irritable bowel syndrome, fibromyalgia NIH external link, and chronic fatigue syndrome NIH external link.



If you have Gastroparesis on top of IC, I would recommend keeping a journal and keep it as detailed as possible - when you eat, what time, what you eat, how much, when your pain starts, etc.  That way, you can determine your personal pattern that is affecting you. You can write down any questions you have for your doctor and can even share your journal with them.





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Some additional information can be found at:

https://www.health.harvard.edu/diseases-and-conditions/diagnosing-and-treating-interstitial-cystitis 

https://medlineplus.gov/interstitialcystitis.html

https://www.kidney.org/atoz/content/interstitial 

https://my.clevelandclinic.org/health/diseases/15735-interstitial-cystitis-painful-bladder-syndrome 








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