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Pelvic Pain | Signs of Interstitial Cystitis

From the GYN Diagnosis Articles List

 Before considering hysterectomy, it can be helpful to rule out the bladder as a source of your painBefore considering hysterectomy, it can be helpful to rule out the bladder as a source of your pain.

Author: Jill Osborne, President & Founder - Interstitial Cystitis Network

Special to Hystersisters.com

Has your doctor has suggested a hysterectomy to cure your pelvic pain and discomfort? Like millions of women around the country, you might be considering it. Who wouldn’t when faced with agonizing pain each month or day. But, there may be another source of pain that you haven’t considered, your bladder. It might be helpful to learn more about this common and treatable source of pelvic pain, interstitial cystitis.

Do you recognize any of these symptoms?
Interstitial cystitis (IC) patients often experience pressure, tenderness, or pain in the bladder and pelvic area. Symptoms may also include urinary frequency (of up to 60 times a day), increase nighttime voiding (nocturia), sudden moments of urgency (the I’ve got to go NOW feeling) and discomfort associated with sexual relations. Many patients notice that their pain worsens as their bladder fills with urine that is relieved after voiding. However, some patients just feel pelvic pain that they are convinced is coming from their reproductive tract.

Why does the bladder hurt?
In IC/PBS, the bladder wall is usually very irritated, inflamed and/or injured. When doctors examine the bladder wall, may find glomerulations (pinpoint bleeding caused by recurrent irritation). Larger, more painful wounds (Hunner's ulcers) are present in 10 percent of patients with IC.

The cause of IC remains a mystery. In a 2000-2001 ICN Research Survey, we asked patients how they believed their IC began. Some IC patients reported that their symptoms began after a traumatic event, such as a fall, car accident, pelvic surgery (i.e. hysterectomy or ovarian cyst removal), childbirth or chemical exposure in a swimming pool. Others believed that their IC began after a severe UTI or as a result of another medical condition, such as fibromyalgia. Some patients thought that their excessive drinking of sodas (diet & regular sodas), coffees and/or alcohol was the cause of their IC.

The common factor in all of these events is their potential for irritating the bladder wall. Thus, our model for IC is that of an injured or irritated bladder.

What can be done for IC?
We’ve come a long way since IC was first discovered. Now that we understand that IC is like a wound struggling to heal, our therapies are focused on reducing inflammation and irritation using a multimodal approach. We want to reduce trauma and irritation to the bladder and give it some time to recover.

To reduce inflammation, IC patients may use an antihistamine (such as hydroxzyine) to help reduce mast cell activity. They may use a protective coating (such as rescue instillations, elmiron or sodium hyaluronate) that can cover up the wounds in the bladder so that they are not irritated each day by urine. A low dose antidepressant can reduce neuroinflammation in the pelvis. If pelvic floor dysfunction (aka very tight painful muscles) and/or trigger points are present, then physical therapy is used. Several over the counter supplements have also gained in popularity, particularly products which use quercetin (such as Cystoprotek, Algonot, CystaQ or Bladder Q).

Coffee is a well known trigger for bladder pain
You may be surprised to learn that many ‘at home’ self help strategies can be very helpful in reducing bladder symptoms. Diet modification is the foundation for success. If you poured on a wound every day, what would happen?? It would get worse. Most IC patients will gladly share with you the painful flares that they’ve experienced after eating or drinking certain foods. Some may experience pain within minutes, but most notice that their pelvic pain is much worse that night when sleep becomes nearly impossible for all the trips to the restroom and/or pain.

Our goal is to make sure that you’re not accidentally irritating your bladder further. It’s very important to stop ALL coffees (even decaf), ALL teas (even green tea), ALL sodas, ALL products with artifical sugars, ALL chocolate (sigh!) & ALL concentrated fruit juices. Even one cup of decaf coffee a day can be a disaster for an IC patient’s irritated bladder. You can learn more about diet and IC risk vs. friendly foods by reading the ICN Handbook - Understanding Diet and IC.

IC & Hysterectomy
IC patients may struggle with other related disorders that can make diagnosis more difficult. Irritable bowel syndrome is a common complaint, as well as pelvic floor dysfunction, vulvodynia, chronic pelvic pain, allergies and anxiety disorder. Sadly, many patients have endured unnecessary surgeries, such as an unnecessary hysterectomy, before their interstitial cystitis was properly diagnosed.

In early 2006, Angela Burch (Florida) was awarded $2 million by a federal judge resulting from medical malpractice case relating to her hysterectomy. Ms. Burch had struggled with pelvic pain and bladder difficulties for many years. In a situation that we believe is quite common, her physicians disagreed on the source of her pain. Her urologist believed that she had interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Regrettably and inappropriately, a hysterectomy was performed despite the fact that her uterus was perfectly normal and no evidence of endometriosis was found.

Dispelling The Myths
You may be thinking that you couldn’t possibly have a bladder problem. After all, only old women struggle with problems. If that’s what you think, you’re wrong. Recent research now suggests that 12% of women in the United States have early signs of IC. The majority of women who visit the IC Network are between the ages of 18 and 40.

Take the PUF!
If any of the symptoms we’ve described above sound familiar, you can take a simple questionnaire that will, in just minutes, help you and your doctor determine if the bladder could be part of your problem. The Pelvic pain, Urgency Frequency (PUF) Questionnaire is the newest diagnostic tool available and, best of all, it doesn’t require a pelvic exam.

If your results suggest that you could have IC, your doctor may ask to perform a simple Potassium (KCL) Sensitivity Test. This brief test involves placing water and then a potassium solution in your bladder via catheter. A healthy bladder will not react to either. A patient with IC will notice that the potassium salt solution can provoke symptoms. While the KCL is not conclusive for IC, it does determine if the bladder wall is intact. Using both the survey and KCL test is helpful in identifying IC patients of all ages.

About the IC Network
Like Hystersisters founder Kathy Kelley, the IC Network was started in 1995 by IC patient Jill Osborne. The ICN is the largest support community for urology patients on the web today, with more 300,000 patient visits a month in our support forums, weekly live chats, guest lectures, newsletters and much more! In addition to IC, we provide support for patients with overactive bladder, pelvic floor dysfunction, recurrent UTI’s, eosinophilic cystitis and others.

Bladder problems can be treated but it begins with self-awareness. If you are urinating more than 6 times a day, getting up at night more than once or experiencing pain and discomfort during or after sexual relations, you could have early signs of IC. The best part about early recognition is that early treatment, perhaps just diet modification, can nip this problem in the bud. But, if you let it develop over time and are too embarrassed to talk about this with your doctor, it may be much harder to treat! Act Now! Take the Quiz! You are not alone!

Other Resources:
Learn more about interstitial cystitis at:

About Jill Osborne

This content was written by staff of HysterSisters.com by non-medical professionals based on discussions, resources and input from other patients for the purpose of patient-to-patient support.

04-06-2006 - 08:54 AM


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