Learn about Interstitial Cystitis and why it is so undiagnosed. Thousands of women go undiagnosed with severe bladder pain that tests show is not an infection.
You have bladder pain constantly but the doctor can find no sign of infection. The urine dip tests come up negative. You know you are not crazy or making up for the pain. You are tired of doctor visits that result in no answers. You may be suffering from what is called Interstitial Cystitis. Bladder infections are common but this is a very different health problem that exhibits similar symptoms. It is seriously underdiagnosed and misdiagnosed.
Misdiagnosis of Interstitial Cystitis is the Norm, Not the Exception:
After years of what felt like bladder infections and being told I had no infection and no problem, I found out I have interstitial cystitis. With problems that go back to 1995 and repeated frustration with doctors who said nothing was wrong, I now know the root cause of the pain. After trying both standard medicine and alternative medicine, I was still having problems at times. Even as an herbalist, I resorted to trying standard medicine when alternative medicine didn’t seem to work either. The pain of interstitial cystitis can become debilitating. I now know that the herbs that are used to treat infection, such as Goldenseal are not the herbs needed to stop interstitial cystitis pain. I could not understand why at times they relieved the pain and at times had no effect at all on the problem. It made no sense.
Just recently when we were moving, I suffered the severest bout in years. The last bout had been two years ago. I went to a doctor, now being enrolled in my husband’s health plan who told me I had no infection. He looked doubtful and shocked when I told him of the severe pain. He did not understand and discounted most of what I was telling him. After really standing up to him, he did reluctantly schedule a test in which they take a camera up into the bladder to see if they can find the problem. He never told me what he was looking for.
I decided to research the subject again under chronic bladder pain. Interstitial cystitis came up in the search. After reading the information on many sites, all of the past pain made sense. I did have the test to confirm the diagnosis. If I had not gotten mad, he would not have scheduled the test. How many women are suffering right now without a proper diagnosis? There are a lot of us out there.
What is Interstitial Cystitis and how it differs from a common bladder infection?
Interstitial cystitis is a chronic health problem affecting the bladder but not a bladder infection. It is now called IC or PBS which stands for painful bladder syndrome. In IC/PBS the bladder lining becomes irritated, and inflamed, eventually becoming swollen, scarred, and stiff. Ulcerations over time will show up in the bladder wall when examined by a camera. There are estimated to be 1.3 million Americans with IC with 1 million of them being women. It is considered by many researchers now to be an auto-immune disease. Many doctors including urologists are not familiar with IC and the current research. This is why the diagnosis is missed. The other problem is that a standard urine test will show negative results for bacteria, blood, and protein. The physician is looking for a common bladder infection as the cause of your visit and the tests do not show any infection present. You go home still in pain with no answers.
What are the symptoms of Interstitial Cystitis?
IC/PBC causes discomfort and pain in the bladder and surrounding pelvic area including the lower abdomen or lower back. The symptoms can go from mild to debilitating in hours. There may be tenderness, pressure, mild to debilitating discomfort and pain, urgent need to urinate, pain that may get worse as you urinate or as the bladder fills up often worsens during your period, pain at times from vaginal intercourse, pain in the vulva or vagina, and abdominal bloating that makes you look like you are pregnant. You will notice the pain of drinking any drink that is acidic including coffee, tea, juice, and black tea. You can feel the irritation begin soon after drinking the tea or coffee which can become debilitating within a short period of time. My husband thought I was exaggerating when I told him a little iced tea will cause pain. He now knows why. When you tell your doctor these symptoms, they often refer you to a specialist for mental problems. Most women are misdiagnosed for years, spending money on physician visits that do not diagnose the correct problem.
What causes Interstitial Cystitis, (IC )/PBS?
IC is not caused by a bacterial infection or some of the other factors such as rectal bacterial contamination that cause bladder infections. Many women who have IC also have autoimmune disorders such as IBS or Fibromyalgia. Researchers are not sure at all what causes it. There is a view by some researchers that it is a general inflammatory condition that affects the bladder and other organs as well. Heredity may also play a role in this condition. There are cases where both mother and daughter are affected but that is not common. In our family, both my youngest daughter and I have the condition. She is blessed that her current doctor did diagnose the problem only recently. I must say that she has been to many doctors since she was out on her own that did not diagnose the problem. They put her constantly on a regimen of antibiotics for bladder infections, which did not work. She also found that the herbs such as Goldenseal that treat infection had no effect on the condition.
New Interstitial Cystitis Research:
There is much new research to find the answer to this problem. It seems the layer that coats the bladder lining is defective. The role of your bladder lining is to protect the bladder from the effects of your urine and other acids. In 70 percent of patients, this lining leaks. This leakage causes drinks such as coffee and tea that are acidic to burn the bladder lining. Other research feels that the body produces insufficient protective substances for the bladder wall to work properly. There is much research but no real clear answers yet. Since they are not clear on its cause, they do not have clear answers on how to treat it.
I have chosen to discuss the tests needed to diagnose this problem along with the management and treatment of interstitial cystitis in the next two articles. The information is too important to gloss over in this article. The next article will discuss the diagnostic procedures to identify interstitial cystitis and the standard medical treatments. In the last article, I will address holistic therapy for this disorder.
Read about how IC is diagnosed here