Interstitial Cystitis Bladder Pain Syndrome by mikeholy


									                                                                    Frequently Asked questions

                                                                                   IC/BPS can greatly affect a person’s
                                                                                   quality of life. Severe cases of IC/BPS
                                                                                   can keep people from going to work or
                                                                                   school and being socially active. It can

                              Cystitis/                                            affect a person’s sex life and relation-
                                                                                   ships. Living with a chronic condition
                                                                                   can increase your risk of depression.

                              Bladder Pain                                     Q: Who gets IC/BPS?
                                                                               A: More than 1.3 million Americans have

                                                                                   IC/BPS, but some studies suggest that
         1-800-994-9662                                                            millions more may have symptoms of
  TDD: 1-888-220-5446                                                              IC/BPS. About 8 in 10 people with IC/
                                                                                   BPS are women, although more men
                              Q: What is interstitial cystitis/blad-               might have IC/BPS than we think.
                                 der pain syndrome (IC/BPS)?                       Men who actually have IC/BPS may
                              A: Interstitial cystitis (int-uhr-STISH-             be diagnosed with conditions that have
                                  uhl siss-TYT-uhss) (IC), is a chronic            similar symptoms, such as some prostate
                                  pain condition that affects the blad-            conditions. Most people with IC/BPS
                                  der. Many experts now call it bladder            are diagnosed in middle age, but it may
                                  pain syndrome (BPS). Symptoms of                 be diagnosed in teenagers and senior
                                  IC/BPS include:                                  citizens as well.
                              	   •	 Pain	or	discomfort	believed	to	be	
                                     related to the bladder, which often       Q: What are the causes of IC/BPS?
                                     gets worse as the bladder fills.          A: No one knows what causes IC/BPS.
                              	   •	 Feeling	like	you	need	to	urinate	right	       The following factors may play a role in
                                     away (urgency), often (frequency), or         IC/BPS:
                                     both. Most people urinate between         	   •	 A	defect	in	the	bladder	wall	that	
                                     4 and 7 times a day. Yet with IC/                allows substances in the urine to
                                     BPS, the bladder may hold less urine.            irritate the bladder.
                                     People with severe IC/BPS urinate as
                                                                               	   •	 A	specific	type	of	cell	that	releases	
                                     often as 30 times a day.
                                                                                      histamine (HISS-tuh-meen) (chemi-
                              	   •	 Pain,	pressure,	or	tenderness	in	the	            cal released during an allergic reac-
                                     pelvic area and/or genitals.                     tion) and other chemicals, which
                              	   •	 Pain	during	sexual	intercourse,	or	              lead to symptoms of IC/BPS.
                                     pain during ejaculation for men.          	   •	 Something	in	the	urine	that	damages	
                              	   •	 Ulcers	and/or	bleeding	in	the	bladder.           the bladder.
                                  The symptoms of IC/BPS vary from             	   •	 Changes	in	the	nerves	that	carry	
                                  person to person and can change over                bladder sensations, making normal
                                  time. Women's symptoms often get                    events, such as bladder filling, painful.
                                  worse during their menstrual periods.        	   •	 The	body’s	immune	system	attacks	
                                  Some people with IC/BPS feel only                   the bladder.
                   page 1
                                  mild discomfort. Others have severe
                                  pain and symptoms.

                                       U.S. Department of Health and Human Services, Office on Women’s Health
                                                                     Frequently Asked questions

                                  It’s hard to know if some of these          	   •	 Sexually	transmitted	infections	
                                  factors actually cause IC/BPS or are               (STIs)
                                  part of the process that leads to IC/       	   •	 Kidney	stones
                                  BPS. Also, the causes of IC/BPS in
                                  some people may be different than the           Some tests used to help rule out other
                                  causes in other people with IC/BPS.             health problems that can cause bladder
                                  Studies of people who have IC/BPS               pain include:
                                  suggest that it sometimes develops after    	   •	 Urine test. Your doctor will insert
                                  an injury to the bladder, such as an               a catheter, which is a thin tube, to
                                  infection. Genes also may play a role in           drain urine. Or you may be asked to
                                  some forms of IC/BPS. In some cases,               give a urine sample using the "clean
                                  IC/BPS affects both a mother and                   catch"	method.	For	a	clean	catch,	
                                  daughter or sisters. Still, IC/BPS does            you will wash your genital area
  TDD: 1-888-220-5446             not commonly run in families.                      before collecting urine midstream in
                                  Recently, researchers have identified              a sterile container. Your urine will
                                  a substance found almost only in the               be looked at under a microscope or
                                  urine of people with IC/BPS. This                  sent to a lab to see if you have germs
                                  substance appears to block the normal              that	cause	UTIs	or	STIs.
                                  growth of the cells that line the wall of   	   •	 Cystoscopy with or without blad-
                                  the bladder. Learning more about this              der distention. Your doctor may use
                                  substance might help researchers better            a cystoscope (SISS-tuh-skohp), which
                                  understand the causes of IC/BPS and                is a thin tube with a tiny camera, to
                                  possible treatments.                               see	inside	the	bladder.	Further	test-
                                  Many women with IC/BPS have other                  ing may include slowly stretching the
                                  conditions, such as irritable bowel                bladder, called bladder distention, by
                                  syndrome and fibromyalgia (feye-broh-              filling it with liquid. This helps the
                                  meye-AL-juh). Allergies also are com-              doctor get a better look inside the
                                  mon in people with IC/BPS. Learning                bladder. The doctor can look for
                                  about these conditions also might pro-             signs of cancer, bladder stones, or
                                  vide clues on the cause of IC/BPS.                 other problems. It can show whether
                                                                                     your bladder wall is swollen, thick,
                                                                                     or stiff and can measure how much
                              Q: How can I tell if I have IC/BPS?                    urine the bladder can hold. It can
                              A: No single test can tell if you have IC/             also find bleeding or ulcers in the
                                  BPS, which can make it hard to diag-               bladder. This test is often done as an
                                  nose. Your doctor will ask you lots of             outpatient surgery.
                                  questions about your symptoms. Your
                                  doctor also will need to rule out other     	   •	 Biopsy. A biopsy is when a tissue
                                  health problems that may be causing                sample is removed and looked at
                                  your symptoms, such as:                            under a microscope. Samples of the
                                                                                     bladder and urethra may be removed
                              	   •	 Urinary	tract	infection	(UTI)
                                                                                     during cystoscopy. A biopsy helps
                              	   •	 Bladder	cancer                                  your doctor rule out bladder cancer.
                              	   •	 Endometriosis	(en-doh-mee-tree-              Researchers are working on developing
                   page 2            OH-suhss)                                    new tests to help diagnose IC/BPS.

                                       U.S. Department of Health and Human Services, Office on Women’s Health
                                                                   Frequently Asked questions

                              Q: Is there a cure for IC/BPS?                      PROH-fuhn), might help with mild
                              A: Doctors have not yet found a cure for            bladder pain. Talk to your doctor if you
                                  IC/BPS. They cannot predict who will            feel you need stronger pain medicine.
                                  respond best to the different treatment         A prescription medicine called pentosan
                                  options. Sometimes, symptoms may go             (PEN-tuh-san)	polysulfate	(pol-ee-
                                  away for no reason or after a change in         SUHL-fayt)	sodium	(Elmiron)	can	help	
                                  diet	or	treatment.	Even	when	symp-              ease symptoms in about one-third of
                                  toms do go away, they may return after          patients.	Because	Elmiron	has	not	been	
                                  days, weeks, months, or years.                  tested in pregnant women, it’s not rec-
                                                                                  ommended for use during pregnancy,
                              Q: How is IC/BPS treated?                           except in severe cases. Doctor’s aren’t
         1-800-994-9662       A: There are treatments available to help           sure how it works, but it may restore
                                  ease the symptoms of IC/BPS. Doctors            the inner surface of the bladder and
  TDD: 1-888-220-5446
                                  usually start with a conservative               protect the bladder wall from irritating
                                  approach, and progress to other thera-          substances. You may have to take this
                                  pies as needed. Although no one treat-          medicine for up to 6 months before you
                                  ment helps everyone, over time many             start to feel better. Other oral medicines
                                  women are able to find a treatment plan         for IC/BPS include:
                                  that helps them to feel better. Some of     	   •	 Amitriptyline	(a-mee-TRIP-tih-
                                  these include:                                     leen), an antidepressant that can
                                  Self-help strategies. Some people                  help increase bladder capacity and
                                  with IC/BPS find relief with self-care             block pain
                                  methods, such as:                           	   •	 Antihistamines
                              	   •	 Bladder	retraining	—	This	helps	the	         Bladder distention. The doctor slowly
                                     bladder hold more urine before sig-          stretches the bladder by filling it with
                                     naling the urge to urinate.                  liquid. Doctors aren’t sure why, but this
                              	   •	 Dietary	changes                              procedure eases pain for some patients.
                              	   •	 Wearing	loose	clothing                       Bladder instillation (a bladder wash
                                                                                  or bath).The bladder is filled with a
                              	   •	 Quitting	smoking                             liquid medicine that is held for different
                              	   •	 Reducing	stress	—	Stress	cannot	             periods of time before being emptied.
                                     cause IC/BPS, but it can trigger             Treatments are given every week or
                                     f lare-ups.                                  2 in about 6-or 8-week cycles. Some
                                                                                  people are able to do this at home.
                              	   •	 Pelvic	exercises	—	A	doctor	or	
                                     physical therapist can teach you how         Nerve stimulation. Wires send mild
                                     to do these.                                 electric pulses to the nerves that con-
                                                                                  trol the bladder. Scientists don’t know
                              	   •	 Low-impact	physical	activity,	such	as	       exactly how nerve stimulation works,
                                     stretching and walking                       but it helps ease urgency and urinary
                                  Oral medicines. Several types of medi-          frequency in some people.
                                  cine might help with symptoms of IC/            Surgery. If other treatments have failed
                                  BPS. Over-the-counter pain relievers,           and the pain is disabling, surgery may
                   page 3
                                  such as aspirin and ibuprofen (eye-byoo-        be an option. Surgery may or may not
                                                                                  ease symptoms.

                                       U.S. Department of Health and Human Services, Office on Women’s Health
                                                                     Frequently Asked questions

                                  Keep	in	mind,	these	treatments	do	not	            Some people with IC/BPS find no link
                                  cure IC/BPS. But, you may find that               between symptoms and what they eat.
                                  these treatments help to ease your IC/            If you decide to avoid certain foods or
                                  BPS symptoms. Researchers continue to             drinks, make sure that your meals are
                                  study new treatments for IC/BPS. Talk             still well-balanced and healthy.
                                  to your doctor to find out if taking part
                                  in a clinical trial might be right for you.
                                                                                Q: Does IC/BPS affect pregnancy?
                                                                                A: Doctors do not have much information
                              Q: Can consuming certain foods                        about pregnancy and IC/BPS. IC/BPS
                                 and drinks bring on symptoms                       is not thought to affect fertility or the
                                 or make them worse?                                health of the unborn baby. Some women
         1-800-994-9662       A: Studies have not proven a link between             find that their IC/BPS symptoms get
  TDD: 1-888-220-5446             diet and IC/BPS. Yet, some people find            better during pregnancy. Others find
                                  that that their symptoms begin or get             their symptoms get worse. If you are
                                  worse after consuming certain foods or            thinking about becoming pregnant, talk
                                  drinks, such as:                                  to your doctor about your IC/BPS and
                              	   •	 Alcohol                                        any medicines you might be using to
                                                                                    treat IC/BPS or other conditions. Some
                              	   •	 Tomatoes
                                                                                    medicines and treatments are not safe to
                              	   •	 Spices                                         use during pregnancy.
                              	   •	 Chocolate
                              	   •	 Caffeinated	and	citrus	drinks              Q: I just found out I have IC/BPS.
                                                                                   What else can I do to cope?
                              	   •	 High-acid	foods
                                                                                A: Learn as much as you can about IC/
                              	   •	 Artificial	sweeteners                          BPS and play an active role in your
                                  Keeping	a	food	diary	might	reveal	a	link,	        treatment and self-care. Adopt a healthy
                                  if there is one, between certain foods or         lifestyle, so you can feel your best.
                                  drinks and the onset of symptoms. Or,             Try to live life as normally as possible.
                                  you can avoid foods or drinks you think           Reach out to loved ones and trusted
                                  might bring on your symptoms or make              friends for support. Think about join-
                                  them worse. Then, you can start eating            ing a support group for people with IC/
                                  or drinking these products again one at a         BPS, which can help you to cope with
                                  time to see if any affect your symptoms.          symptoms and stress. n

                   page 4

                                       U.S. Department of Health and Human Services, Office on Women’s Health
                                                                  Frequently Asked questions

                              For more information
                              For	more	information	about	interstitial	cystitis/bladder	pain	syndrome,	call	women-
                     at 800-994-9662 or contact the following organizations:

                              National Kidney and Urologic Diseases          Interstitial Cystitis Association
                              Information Clearinghouse                      Phone Number: 800-435-7422
                              Phone Number: 800-891-5390                     Internet Address:
                              Internet Address: http://kidney.niddk.nih.   gov                                            American Urological Association
                              American Chronic Pain Association              Phone(s): 866-746-4282; 800-828-7866
  TDD: 1-888-220-5446         Phone Number: 800-533-3231                     Internet Address: http://www.
                              Internet Address:

                              American Pain Foundation
                              Phone Number: 888-615-PAIN (7246)
                              Internet Address: http://www.

                                  Reviewed by:
                                  Philip Hanno, M.D., M.P.H.
                                  Professor	of	Urology
                                  University	of	Pennsylvania

                                  All	material	contained	in	this	FAQ	is	free	of	copyright	restrictions,	and	may	be	copied,	
                                  reproduced, or duplicated without permission of the Office on Women's Health in the
                                  Department of Health and Human Services. Citation of the source is appreciated.

                                  Content last updated April 14, 2010.

                   page 5

                                     U.S. Department of Health and Human Services, Office on Women’s Health

To top