Is It Interstitial Cystitis or Recurrent Infections? Your Doctor Might Not Know
What is Interstitial Cystitis?
I thought I was going crazy. For years I would experience intermittent urinary tract pain. I would go to my doctor, be prescribed an antibiotic, take the medication and then still have pain. I would return to the doctor for the pain and be told that I no longer had an infection. Was it all in my head? After about six years of this, I finally went to the urologist, and on the first visit I was told that I had a condition known as interstitial cystitis.
What is interstitial cystitis (IC)? It is also known as bladder pain syndrome (BPS), a condition in which the individual will feel pain in their bladder and/or urethra without infection. Only about 10 percent of the IC cases can be explained by visible ulcerations in the lining of the bladder. The other 90 percent of the cases? Well, they don't really know what causes the pain. But could this pain be related to something else? Maybe a recurrent UTI or infection of some kind that tests aren't finding in the urine? Read on to find out.
My IC Story: Questioning the IC Diagnosis
The problem with a diagnosis of IC is that the signs and symptoms so closely match UTIs and bladder infections that they are often impossible to tell apart. With both IC and UTIs, the main symptom is pain. This is a pain that isn't mild and aching. This is a pain that is often described as a burning, intense pain. In fact, my experience with urinary pain (both bladder and urethra) was so severe that often times I didn't even want to move. I would cry, grab at myself, and literally wish to tear my bladder out to retain a new one. I am not a person who is sensitive to pain. I've had two children and surgeries of which I could handle with no problem and minimal pain meds if any. But experiencing this kind of searing, severe pain was debilitating and depressing for someone as active and life-loving as me.
I started to wonder if I wasn't just having recurrent infections. But my doctors shook their heads and said the tests were negative for infection. I was told to control my diet - to go on the "IC approved diet." This means you can't eat or drink anything acidic, which is pretty much all of the best tasting foods and beverages: coffee, alcohol, tomatoes, citrus fruits, black tea, chocolate, etc. I listened to instructions and cut out all acidic foods from my diet for a period of 2 months, all the while hoping this would give my bladder time to heal and cure my pain.
After two months, the pain was nearly gone. Then bam, I went on vacation and started feeling pain again. I returned to the doctor's—this time to a different doctor—and was told once again I had no infection but that they'd send the urine off to be cultured. I went home with no antibiotic and severe pain, once again. A week later I received a call from the doctor's office. "Oh, you do have an infection; we called in an antibiotic to your pharmacy." After taking the antibiotic as prescribed for 10 days, the infection cleared and I haven't had any pain since!
I started to wonder, was it really interstitial cystitis, or was it a recurrent infection the whole time that just wasn't detected? The problem is that IC's signs and symptoms mimic UTI signs and symptoms, and often the women diagnosed with IC don't know the difference. Let's explore a comparison of the two conditions and their symptoms.
Signs & Symptoms Comparison: Seem Similar?
Confusing & Conflicting Medical Recommendations
When an individual is diagnosed with IC, the first recommendation is to change one's diet. This involves eliminating anything acidic from the diet, including coffee, tea, tomatoes, citrus fruit, chocolate, alcohol, etc. When you first hear you have to eliminate these things from your diet in order to control your pain, it is overwhelming. Most people eat or drink these things on a daily basis. The worst part is, this diet recommendation isn't a cure it is simply to maintain a relatively pain-free or low-pain lifestyle.
For UTIs, nearly always an antibiotic by mouth is prescribed. Usually it is ciprofloxacin, but sometimes Levaquin is prescribed. The question is, if a person is having recurring infections, why keep giving them the same antibiotic? Is it possible these infections are becoming tolerable to these antibiotics and so rendering them ineffective? And when you give the same antibiotic over and over again for the same infection, the logical conclusion is that it will not work to rid the body of whatever bacteria or microbe is infecting it. Another thing to note, with UTIs we are often told to drink cranberry juice or take cranberry pills. The logic behind this recommendation is that the acidity will help to flush out the bacteria in the bladder.
Herein lies the confusion and conflict with misdiagnosis of IC for recurrent UTIs: if we are told to cut out acidity from our diet to control our IC pain, but in reality we are experiencing a recurring or chronic UTI, we are taking away a potential cure to flushing out the bacteria. Conversely, if we do have IC and think it's a UTI and increase the acidity in our diets by drinking cranberry juice, we increase our pain.
Perhaps its time to take our health into our own hands. Perhaps its time to start questioning what our doctors prescribe and tell us to do. Because sometimes doctors don't know what they're doing. That's the cold hard truth.
Healing is possible. But you have to believe your body can heal itself.— Nicole Canfield
What Should We Do? Is Healing Possible?
After two months of stripping acidic foods from my diet in order to control my IC pain, I experienced very little pain. However, it would reappear from time to time. Then after taking a different antibiotic (nitrofurantoin) than what I had been prescribed over and over again, my pain and symptoms completely disappeared. And I am able to drink or eat whatever I want now without any urinary or urethral pain whatsoever.
The point is that we should take our health into our own hands. Healing from IC and recurrent UTIs is possible. But only if we look for the answers ourselves. Keep in mind that the dipstick urinary tests they use in the doctors' offices and even the home-kits only test for WBCs and nitrates, and often these tests give a false negative. If you are experiencing pain over and over again, and you feel it is a recurrent infection instead of IC, don't take a diet change and an incurable diagnosis as the last word. Make sure your doctor is sending your urine away to be cultured. Also, if you've taken one antibiotic repeatedly and continue having pain and symptoms, ask for a different antibiotic to treat a potential infection.
There are also natural ways to help heal a damaged bladder. First of all, reduce your alcohol intake. While acidity may be good for reducing chances of infection, alcohol is full of sugar and is never good for your body. Quit smoking. Smoking is linked to cancer of all kinds, including bladder cancer. Increase your water intake. You should be taking in half of your weight in ounces of water on a daily basis. So for example, if you weigh two hundred pounds, you should be drinking one hundred ounces of water every day. You can also add herbal remedies to your diet, including cranberry pills, pau d' arco pills, and cysta-q supplement.
The biggest recommendation I can give you—believe your body can heal itself. If you truly believe and know in your heart and mind that the body is capable of healing itself in amazing ways, this is at least one-third of the battle!
This content is for informational purposes only and does not substitute for formal and individualized diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed medical professional. Do not stop or alter your current course of treatment. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
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© 2017 Kitty Fields