There is a lot of really interesting research going on about IC that may ultimately lead to a treatment of the cause rather than trying to treat the symptoms. Most of this is directed to examining the changes in the central and peripheral nervous system that may underlie the development of IC. Other researchers are trying to find the relationship between the increased pain nerves and allergy related cells in the bladder lining. 

On the average it takes over 5 years and 8 doctors to finally diagnose IC. People are treated over and over for bladder infections or pelvic pain or painful intercourse with only temporary or even no relief at all. 

The condition probably results from a change in the nerves that go to the bladder so that normal feelings of fullness or needing to void are felt as pain and intolerable urgency.  Over time the bladder may become scarred or contracted with very limited ability to hold much urine. People with PBS are more likely to have other conditions like endometriosis, irritable bowel syndrome, Chron's disease, vulvodynia or other pelvic pain conditions. Medicines will make the condition more tolerable but rarely are completely successful at curing or completely eliminating the symptoms. Many people who have PBS suffer from many types of allergies and this may contribute to the onset of symptoms.

There is no definitive test for PBS though there are several tests being evaluated now such as urinary anti-proliferative factor and similar tests. Cystoscopy and distention of the bladder with fluid is sometimes used, especially by urologists. Potassium may be put into the bladder to test for sensitivity. Lidocaine may be used in a similar fashion to see if this will change the symptoms.  Usually the diagnosis is made by the pattern of symptoms and not by any specific test.

Medicines are used to change the symptoms and to provide relief. The following are some of the drugs that may be used.

1.       Tricyclic antidepressant meds.  Usually  this is either amitriptylene or imipramine. These are not used to treat depression but rather to decrease bladder spams and to decrease pain perception. They have the side effect of causing drowsiness but this usually wears off within a couple of weeks.

2.       Elmiron is used to try to replace the insulating layer in the bladder and decrease bladder sensitivity. It may take three to six months to be effective so patience is necessary. It may cause hair loss but this is rarely significant.

3.       Anticholinergic medicines. These are oxybutinine, Detrol (tolteradine), Ditropan (oxybutinine), Sanctura (trospium), Vessicare (solifenacin)  and Enablex (darifenacin). They decrease bladder sensitivity and urgency. The common side effects are dry mouth and constipation.

4.       Bladder treatments are given in the office with a catheter. Lidocaine/heparin is given about three times a week for three to six weeks.  DMSO is given in the same manner every two weeks or so.

5.       Lyrica or Neurontin decrease pain perception by changing the central nervous systems perception of stimuli.

6.       Antihistamines like Hydroxyzine or Singulair help some people who suffer from allergic symptoms or who have food sensitivities.

7.       Prelief ( calcium glycerophosphate) is soothing to the bladder. This is available without prescription.

Many people will have improvement with diet modifications and a sheet is included that suggests foods to avoid or that may worsen symptoms.  You will have to experiment with this yourself.

People who do not get better with other treatments may be considered for an Interstim device. This is a “pacemaker” for the bladder. An electrode wire is inserted into the lower back and connected to a generator that is placed under the skin. This usually will decrease the urgency and may also help the pain of interstitial cystitis.  

There is a web site with a lot of good information for IC/PBS sufferers at http://www.ichelp.com/cafeica/welcome.html.   This site has up  to date information about research, treatment options and coping skills for people with IC.  The NIH has a web site, http://kidney.niddk.nih.gov/kudiseases/pubs/interstitialcystitis/index.htm with information about IC.