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Gaye Sandler is an author, IC patient & support group leader, involved in IC work for years. In 1990, she published "Stretch Into a Better Shape." In 1993, she produced a stretching and exercise video for IC patients. She is a specialist in Aston-Patterning movement and muscle re-education.

Andrew Sandler has over ten years of clinical and health care management position. Andrew holds a Ph.D. in Special Education, a M.A. of Health Adminstration, M.A. of Clinical Psychology.

 

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NEW! Bio-Identical Hormones: An Alternatve Choice for Hormone Replacement Therapy
Cindy Sinclair, president of the ICU of Texas (now PURE HOPE), suggested I contact gynecologist Randy Birken for an interview.  Dr. Birken is on the ICU medical advisory board and has spoken at Cindy’s group about the significant improvements he’s seen in patients who are taking bio-identical hormone replacement therapy (BHRT).

Several years ago I tried a compounded estrogen cream from a woman’s pharmacy, but an inactive ingredient, or the type of estrogen, or the prescribed dosage flared my bladder symptoms.  When I called the pharmacy to figure out the problem, they were of little help and absolutely did not want to hear about IC.  What impresses me most about Dr. Birken is how closely and individually he works with his patients, including his IC patients.  In my experience there’s nothing worse than a health care practitioner who only fits you into his or her regime. With that said I’m eager to begin the interview so you and I can learn about BHRT. Read the Interview Now!

Starting Over In A New City
You’ve probably heard the saying “There’s nothing scarier than the unknown.” You also probably agree that this is especially true for IC patients.  Just the thought of starting over in a new city and leaving a supportive network of doctors (who you have grown to trust and depend on), as well as supportive friends and/or family members, is very frightening.  When faced with such a transition, it’s necessary to prioritize your needs in order to keep the physical and stressful challenges of relocating realistic and manageable. Read the full article!

The Hurricane Diary - Katrina, Rita & My Bladder
As residents of New Orleans (now evacuated to Houston, TX) Gaye & Andrew had a devastating experience during Hurricane Katrina. Read their first hand account of what happened during the hurricane, their fears, experiences, now it affected her IC and much more! Read their full story now!!

Surviving Painful Flare Ups
For the past year, IC support group leader Molly Glidden and I have been working on a new IC book. This column is from Please Understand; An Interstitial Cystitis Guide for Partners, which will be available this summer.

Multiple Chemical Sensitivity Impacts Relationships
We hear from a number of IC patients who suffer with Multiple Chemical Sensitivity (MCS). MCS is a chronic condition marked by a greatly increased sensitivity to multiple chemicals and other irritating substances. The only way to prevent the symptoms of MCS is to avoid chemicals and irritating substances. However, this is obviously challenging in today’s world because scents and chemicals are everywhere.  

Walking and Power Walking: How Do They Benefit IC Patients
As the benefits of routine walking and the number of daily steps we take become a focus for good health, IC patients may wonder where they fit in to this exercise approach. After all, exercise in general can be quite challenging for many patients. And for some, even walking short distances can cause bladder, hip, low back and leg pain.

When the Judgement of Others Hurts
When I was young, I had severe chronic fatigue syndrome that went undiagnosed for years. Like so many of you, it also affected my relationships with family and friends. ?I struggled on a daily basis with people who doubted my illness. It was normal to hear comments like ?You?re always sick? or ?why don?t you do something about it.? And, sadly, for years, I felt that I had no choice but to pretend that I felt well when I didn't. Of course, there were times when I couldn't pretend.?

The Right Exercise, Therapy and Body Support for IC
When I first experienced IC I couldn't believe how quickly my body changed. I could no longer teach my exercise routine and I had to give up my practice in movement and muscle re-education. However, I felt lucky because I knew what to do for myself. I changed my exercise routine into a gentle stretching routine to encourage length in my muscles and increase my range of motion, which had severely decreased. I learned that I got into trouble if I held a stretch too long, and I learned what stretch positions I could no longer use.

Interstitial Cystitis and Stress: A Spouse Perspective
I sometimes fantasize how easy my life would be if my wife, Gaye, did not have Interstitial Cystitis (IC). It often seems that every aspect of our lives such as travel, meals, finances and daily errands are more difficult because of IC. It is amazing that my wife and I have been able to cope as well as we have with these added pressures. (Featured Exercise - Relaxed Breathing)

Neurontin - A Treatment for Chronic Pain
In 1994 the anticonvulsant drug Neurontin, (gabapentin), was approved by the FDA for the control of epilepsy. In 1996 researchers began to find that Neurontin was helpful in illnesses other than epilepsy. Today it is often used as a "pain medication" and is prescribed for most all chronic pain. When Neurontin is prescribed for conditions other than epilepsy it is considered "off-label" use. These conditions include:Interstitial Cystitis (IC), Fibromyalgia (FMS), Chronic Fatigue Syndrome (CFS), Multiple Sclerosis (MS), Reflex Sympathtic Dystrophy (RSD).... (Featured Exercise - Hip Flexor Stretch)

Understanding Pain
Who doesn't remember their first bout of IC? The on-going relentless pain (pressure and/or frequency) was different than any other. It was frightening. There seemed to be nothing to relieve it and finding the right doctor to help was just as frustrating. Finding the right treatment or medication added to the frustration. But in time, with the appropriate treatment and proper diet, the painful symptoms seemed to calm down. When the pain level decreased, there was relief, even though there seemed to be an on-going awareness of the bladder. The relief was relative to the intense symptoms first experienced.
(Featured Exercise - Quad Stretch)

The Princess and the Pea - Part Two
It's common for IC patients to wake up with nocturia (a strong and /or painful urge to urinate many times during the night), and not be able to go back to sleep. Knowing that you have to get up for work or an early appointment can make it even more difficult to go back to sleep. Consequently, sleeping late helps make up for lost sleep during the night. However, medications are often necessary in order to help you get back to sleep, or even sleep through bladder interruptions during the night.

The Princess (or Prince) and the Pea - How IC and Overlapping Conditions Can effect Your Sleep!
I was once invited to a "Come as your favorite thing to do" party. I didn't go, but if I had I would have gone in my pajamas. When I met my husband I told him that I was like the princess in the book "The Princess and the Pea." I have had trouble sleeping for most of my life, but never found anything that helped until I was diagnosed with IC.

IC Over Time - Andrew's Perspective
Gaye and I celebrated our 14th wedding anniversary last spring. It is hard for me to believe that the time has passed so quickly. Our anniversary has motivated me to reflect on our marriage and the ways that each of us has changed over the years. Gaye's IC is certainly one of the most significant factors which has affected our lives. Over the years, this disease has forced each of us to change our expectations about a variety of important things such as career, travel, housing, food and sex. I would like to share some thoughts in this column about how we have coped with this disease over this long period of time.

Pelvic Floor Dysfunction & Problem Trigger Points in Other Parts of the Body
Symptoms of pelvic floor dysfunction (PFD) include urinary urgency and frequency, a feeling of incomplete urination, decreased urine flow and constipation, pelvic pain with intercourse, pain in the back of the vagina, pain in the testicles (and/or penis), and pain in the lower back. Sound familiar? If you read our last column you will understand that there is a debate between doctors, whether IC is caused by PFD, or whether PFD can cause IC. Are both theories right? There are doctors who believe that IC is caused by different things in different people. No one really knows yet.

Understanding Pelvic Floor Dysfunction
Pelvic Floor Dysfunction (PFD), or vaginismus, is a common condition in IC patients. PFD causes the pelvic floor muscles to involuntarily spasm in response to an irritant. In IC patients, it seems to be the irritation in the bladder. In some IC patients it may be the irritation in both the bladder and the vulva, such as with vulvodynia. It is believed that the pelvic floor muscles of IC patients can't always contract and expand as they should during urination, elimination and sex, so they become irritated and spasm. However, doctors who specialize in PFD have different theories about the cause. Some believe that PFD can cause IC and others believe that IC can cause PFD. Some doctors believe that all IC patients have PFD, and some believe that IC and PFD are separate problems. What is agreed upon is that one condition can affect the other, and PFD can definitely cause terrible IC symptoms.

IC, Hormones, Perimenopause and Menopause
Research shows that hormonal changes affect systemic conditions with flare-ups and remissions such as IC, fibromyalgia (FMS), chronic fatigue syndrome (CFS), vulvodynia, multiple chemical sensitivity (MCS), irritable bowel syndrome (IBS), Sjogren's syndrome and lupus. Hormonal imbalance has been speculated as a possible cause of IC. Whether IC is, or is not caused by a hormonal imbalance in some patients, hormones certainly affect IC symptoms during the monthly menstrual cycle, during pregnancy, and during perimenopause and menopause. Understanding how hormones affect the bladder is very important.

The Psychological Effects of IC
IC has been known to medicine for a long time. At the turn of the century IC was named Hunner's disease after a doctor who discovered ulcers on the bladder wall of a patient. However, the male-oriented field of urology largely considered IC a rare disorder of post-menopausal women, as well as a malady caused by hysteria. Hysteria was at that time a diagnosis often used for unexplained symptoms and an array of misunderstood illnesses, predominantly affecting women and thought to be caused by repressed emotions. Even later, symptoms of IC were attributed to emotional problems when urine tests came back negative for infection and there were no signs of Hunner's ulcers.

Understanding The Whole Body Effects of IC
When Andy and I started our group in 1992, we had no idea that so many other IC patients also suffered with overlapping conditions. We watched as newcomers, to our group, would begin to experience new symptoms. There were doctors and researchers who believed that IC was a systemic disease, and there was a published study on the overlapping conditions of IC, however most doctors did not have this information. Today, most doctors know that IC is often overlapped with fibromyalgia, irritable bowel syndrome, vulvodynia, allergies and so on. But, what they do not know is how to treat other conditions without interfering with our bladder maintenance.


Revised: 11/17/06

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