18.
As chairman of the IC Patients' Association in the Netherlands, I have been
asked by a number of members whether the contraceptive pill should be used by
IC patients. Could you shed any light on this for me?
Hormones certainly play
a role in exacerbating the symptoms of some IC patients. We know, for example,
that patients may flare when they ovulate, as well as before their menstrual
cycle. The role of birth control pills in exacerbating IC, however, is uncertain.
It's like pregnancy and IC. Some patients may get better during pregnancy, and
some may get worse. It may require some trial and error before you find a combination
that works effectively for you.
20.
I've talked with several patients who are unable to take multivitamins. Why
is this?
Some IC patients simply
can't tolerate the acidity of ascorbic acid, a common form of Vitamin
C. In addition, Vitamin B-6 (pyridoxine hydrochloride) and magnesium have
been reported to exacerbate the symptoms of some IC patients. Bev Laumann,
in her book
"A Taste of the Good
Life: A Cookbook for an Interstitial Cystitis Diet" has an excellent
section discussing vitamins and supplements. She reports that while some
patients may be unable to take commercial vitamins, they can usually tolerate
the same vitamins found directly in foods. Bell peppers, for example,
are an excellent source of Vitamin C. Sunflower seeds, cashews and almonds
are an excellent source of B-6. It's worth noting that most commercial
vitamins also have food coloring, fillers and extra stuff which can react
negatively with a sensitive IC bladder.
23.
I am starting with a new urologist because of relocation out of state. I feel
that I have IC because I haven't been responding to antibiotics. I have been
through a term of levaquin and zithromax since mid January when my symptoms
resurfaced. Now I have the added discomfort of pain along with the unbearable
relentless urge to pee. How do I get the care I need from my new urologist?
Should I be more assertive or suffer through the endless trial and error?
This is not the time for
you to be passive. You should be assertive and proactive. Make sure that you
get a urologist that is interested in treating patients with IC. Also, it will
be helpful if you bring in a voiding diary as well as additional medical records.
You can check the ICN Physician Listings,
or the ICA and/or contact your local county
medical association. On-line, the AMA (http://www.ama-assn.org)
offers a Dr. Finder service where you can search for physicians by zip code.
24.
When I had my hydro and bladder biopsy, the pathologist reported that there
was evidence of "chronic cystitis" in the bladder but not enough mast cells
for an IC diagnosis. How does "chronic cystitis" in the bladder differ from
IC, in terms of the bladder wall?
Mast cells are naturally
found throughout the body, particularly in the skin, the nasal passages and
the GI tract. When you have a cold or suffer from fever, mast cells react to
pollen or a virus by producing histamine and other substances. This leads to
pain, inflammation and swelling. Mast cells are also normally found in the bladder
wall and muscle. The role of mast cells in IC is disputed in part because research
studies have demonstrated that not all IC patients have high levels of mast
cell activity.
The level of mast
cell activity may relate to the type of IC that you have. In the March
200 Journal of Urology, "Recruitment, distribution and phenotypes of mast
cells in interstitial cystitis" by Peeker R, Enerback L, Fall M, Aldenborg
F states that patients with "classic IC" (ulcerative) do have more mast
cells in their bladders than in "non-ulcerative" IC. The NIDDK
suggests that IC be diagnosed with an analysis of your urinary frequency,
urgency and/or pain. I, personally, don't use a mast cell analysis in
my diagnosis of IC patients.In using the term "chronic cystitis," it appears
that your physician has found evidence of long term inflammation in your
bladder, which could have been caused by a variety of factors, such as
a long term infection or even a bladder stone. But, we don't know if your
doctor found the characteristic "petechial
hemorrhaging" (glomerulations common in IC patients) in your bladder.
I suggest that you sit down
with your doctor and discuss your concerns. If you fit the other diagnostic
criteria for IC, it may be helpful for you to try the IC diet to see if that
helps to reduce your discomfort and symptoms.
25.
My 6 year old daughter has been voiding every 10 minutes for approximately 6
weeks she had had urine cultures. These are showing negative. Her doctor thinks
she is just nervous, I know this is not true. I have IC and I am wondering if
this is hereditary. I'm sure it is. My daughter is getting very aggravated over
this should I taker her to a specialist or assume she is going to take after
me.
You have to make sure that
she is seen by a pediatric urologist. Whenever people use the term "nervous"
I think that that's a sign that they just don't know. It's important to first
rule out any anatomic difficulties that could be contributing to the frequency,
such as a neurogenic bladder, urethral stenosis (stricture).
She should have a neurological
exam, an ultrasound to make sure that she empties her bladder completely, and,
in some situations, a specialist may want to do a urodynamics exam on her. The
whole idea is to rule out an anatomic basis to her problem. If none can be found,
then behavior modification (timed voiding) would likely improve her situations.
26. Would
you know if Kava Kava, a calming herbal supplement, would create any discomfort
for an I.C. patient?
I have patients I recommend
Kava Kava too. It's an anxiotylic (anti anxiety) medication. In animal tests,
kava kava produces sedation, an antispasmodic effect and is a muscle relaxant.
It can be used for nervous anxiety, stress and restlessness. No health hazards
are known with the proper administration of therapeutic dosages. As with any
medication, specific allergic reactions can occur. It should not be taken for
longer than 3 months without a doctors supervision. For dosage information,
please talk with your doctor.
28. Having
visited several doctors for pain in the urethra area (the problem started after
a bladder infection), a wonderful doctor in B'ham AL discovered I had something
similar to IC in the urethra--basically he said the lining had been destroyed
and I have nerves exposed. My pain intensifies when I sit. The pain is not extreme,
but constant. I do not have the constant urge to urinate that most IC patients
seem to have. Have you heard of this and do you know of any treatments? Any
info you can provide would be appreciated--it is getting difficult for me to
work because of the constant pain.
This could be possible but
I'm wondering if you may have pelvic
floor dysfunction? Why? Because when you sit (and the underlying muscles
adjust), your pain worsens. I think a pelvic floor evaluation would be
in order. It could be urethritis, but I would suggest a pelvic floor evaluation
to rule out a hypertonic spasm of the pelvic floor muscles.
29.
Why do I have a problem only at night while sleeping then when I get up there
is no pain most of the day?
It may just be distraction.
We have many patients who report that, at night, their symptoms seem worse
because there is nothing to distract them from their bladders symptoms.
If it is preventing you from sleeping, you'll want to talk with your doctor
about other alternatives. Some medications can be very useful in improving
patient sleep patterns, such as a low dose antidepressant or hydroxyzine
(Vistaril/Atarax). The ICN also has some insomnia
self help tips.
30. When
someone eats the no-no foods, generally how long does it take for the bladder
to react? How long should the reaction last?
Since I'm not an IC patient,
it's hard for me to give you the specifics. Jill tells me that she can tell,
often within an hour, if she's eaten something that bothers her bladder, particularly
soda. In other cases, in may be that night or the next day before the symptoms
appear. How long should they last? It depends upon the state of your bladder
health. If you're bladder is generally in good condition, the reaction should
resolve relatively quickly. However, if your bladder is very sensitive (i.e.
you have Hunner's Ulcers or are already in a flare), it may be the proverbial
"straw the broke the camels back" and cause a longer flare.
31.
Because of IC and vulvodynia, I had to give up an elementary teaching job eight
years ago. I have been told getting disability is almost impossible. My husband
may be losing his job and cannot collect unemployment. I want to help. Can the
people at Vocational-Rehabilitation help me find a good paying job. I cannot sit
for long periods of time and have frequent urination problems. Some days I am
homebound because my underclothes are too irritating. Can anyone out there help
me to help myself?
This is an excellent
question and depends, in large part, on how your doctor evaluates your
health. If your doctor agrees that you are fully disabled and should not
work, then an application for SSA
disability makes sense. Yes, the denial rate is high, but more and
more patients are also being approved.
If your doctor states
that you can work, without risk, then you may be able to look for work.
Obviously, you'll need access to a restroom frequently and it may be helpful
for you to use a chair
cushion that would make sitting easier. The ICN has one that has helped
several others sit for longer periods of time.
You can read more
about vulvodynia and the disability application process in the ICN Patient
Handbook (http://www.ic-network.com/handbook/).
Make sure that you read the self help chapter, that can help you identify
some of the common irritants, such as laundry soap, bath soaps, etc. that
seem to exacerbate vulvodynia and IC symptoms.
33. I
was diagnosed with IC in 1990 and have been in remission since 1992. I started
taking birth control pills for the last 6 months and my IC symptoms have returned.
What types of birth control are best for IC patients? Does the type of hormone
in oral contraceptives matter?
As I mentioned in an earlier
question, hormones can certainly impact IC. Some patients report that progesterone
based pills can cause flares, while others find that estrogen can cause problems.
Symptoms may also relate to a chemical sensitivity to the additives or fillers
found in pills, such as in premarin. It may be preferable for you to try non-pill
related contraception, such as condoms, spermicides, etc.
34. Please
explain the link between pelvic floor dysfunction and IC. The first time I developed
major pain from pelvic floor muscle dysfunction, that is when the IC symptoms
began to appear. Does sexual intercouse increase IC bladder inflammation or
symptoms?
The bladder sits on several
muscle groups that collectively are called the pelvic floor. If these muscles
are loose it may lead to a "fallen" bladder which can cause urine leakage with
a laugh, cough or sneeze (stress incontinence). If the muscles are over- active
or go into spasms, a variety of clinical symptoms can result such as urinary
frequency and burning ,bladder and/or pelvic pain (very similar to IC).
While we're not sure exactly
what causes IC, it's clear that the pelvic floor must be evaluated as a cause
for urinary frequency, urgency and/or pain. Symptoms can come from a traumatic
injury to the pelvis (like a bicycle accident), from a bladder infection and
also from underlying muscle/nerve problems. The similarity is that both IC and
PFD can cause all three symptoms. However, it's like the chicken or the egg,
we're not sure which comes first or even if they are related.
There is some research
supporting the fact that if you had a childhood muscle trauma, it can
provoke some frequency and urgency in later years. It also makes sense
that if you've had IC first and had significant symptoms over a long period
of time, that the muscle tone of the pelvic floor could become overactive
and lead to the development of PFD. In many cases, PFD can be relieved
with the use of biofeedback and myofascial release techniques that help
to relax the pelvic floor.
35. Do
you feel stress makes your IC symptoms worse? I used to work full time, but
I have found that I am completely exhausted and tired all the time. I used to
work many hours, and have as little as 5 hours sleep. I was diagnosed with IC
two years ago and the job I have is extremely stressful with long hours and
I can't do it anymore. I believe that this makes my IC symptoms worse.
Yes, stress can make an
IC flare worse. The more stressed you are, the more tense your muscles
will be including those muscles around the bladder. That can easily lead
to more pain and discomfort. If you feel that stress is a problem, then
you may want to try, twice a day, a very simple five or ten minute guided
relaxation that you can do in your office. There many audiotapes available
that can help you, throughout the day, keep calm, collected and tension
free.
We all "think" that we
are good stress managers, but we've got to be willing to practice what we preach.
Many Icers work successfully full time depending upon their physical condition,
but the most successful usually have EXCELLENT stress management skills. They
sleep well. They eat a balanced diet. They ask for help if needed, including
taking a stress management or two. It can also be helpful for you to talk with
a psychologist to get some ideas on how you can more effectively handle it all.
Have faith!
36. I
have not been diagnosed with IC, however, for 4 months now I have had bouts
of bladder irritation/infection feeling episodes. When cultured I have no infection.
I recently had a bladder and kidney ultrasound which proved normal. For three
weeks I had no symptoms and then back it came. No blood tests have been performed.
Can IC come and go with different levels of severity? And how is one determined
not to have an infection? I'm on my second Urologist. What should the routine
tests be to rule out IC?
Yes, IC is a condition
of remission and flare. It may just be that you're flaring while you ovulate
or before your period. It can be very helpful for you to do a voiding diary
for a few months so that you can easily track your monthly flares.
Both bladder and vaginal
infections are determined via a culture, which can be easily done. You should
definitely have a urinalysis as part of the screening process. Other tests may
include a urodynamics, VCUG, cystogram, IVP and, of course, a possible hydrodistention.
A good OB-Gyn work up also makes total sense here.
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37.
Just learned today that Rimso-50 (DMSO) is not available from manufacturer and
no availability date has been released. The same thing happened in July, 1999,
and I could not get treatment until September. What is going on? Is any action
being taken to correct this situation? Many patients must be affected.
This is a complicated situation.
Baxter Pharmaceuticals owns RIMS0-50. They contract with another company, Terra
Pharmaceuticals, to manufacture it. Terra is currently going through an FDA
review process which has limited its availability both last year and this year.
Until that is resolved, some hospitals and physicians are obtaining "compounded
DMSO," which is prepared (compounded) directly by qualified pharmacists. Check
back issues of the ICN newsletter for more information on this.
38. I'm
27 and I've been diagnosed whit IC a year ago. I've been under treatment since
(elmiron, DMSO). It was going really well until last week when the pain came
back. I was planning a pregnancy for this summer. My doctor is putting me back
on DMSO treatments and I'm still taking Elmiron. I'm afraid there's never gonna
be a good time. Should I forget the idea of another baby?
Absolutely not. You're
still very young and don't need to make this decision for many years more. There
are many babies born successfully to IC patients. It's certainly important to
wait until you're feeling a bit better for you go for it. You can talk with
other women who hope to become pregnant, or are pregnant, in the ICN
Message Boards. The ICA-US also has a pregnancy support telephone list.
39. Is
it possible that another type of infection such as a vaginal infection can cause
similiar symptoms to IC like urgency, pain, burning, itching? I took antibiotics
for a long period of time and I am thinking the over use of them caused some
of my problems which caused a build up of yeast. Is there such a thing as yeast
cystitis?
Yes, it is. The hard part
about treating pelvic diseases is that it's often hard to distinguish between
the two. Certain vaginal infections can cause bladder sensitivity. Some patients
also report that yeast infections can cause dramatic bladder irritation and
symptoms.