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.
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.
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.
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.
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.?
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
Cystitis and Stress: A Spouse Perspective
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)
- 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)
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
Exercise - Quad Stretch)
Princess and the Pea - Part Two
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.
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.
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.
Floor Dysfunction & Problem Trigger Points in Other Parts of the Body
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.
Pelvic Floor Dysfunction
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
Hormones, Perimenopause and Menopause
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.
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.
The Whole Body Effects of IC
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.
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