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Interstitial Cystitis (Painful Bladder Syndrome)
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Interstitial Cystitis (Painful Bladder Syndrome)
Sad for me that after living with chronic UTI's for the 46
years (since I was 6 years old), I seem to have developed
institial cystitis and chronic pelvic pain syndrome. I know
all the tricks for bladder infections, but this new
phenomenon has me a bit floored -- this bout of pain has
lasted 3 weeks and though I take care of myself and do all
the things I'm supposed to, take pyridium regularly (which
makes me sick) and while it usually subsides throughout the
day, it returns each morning with a vengeance. Anyone have a
longer-term history with this malady who has tricks that
work? My quality of life has suddenly and dramatically
declined. My work life is affected (I just don't feel good),
and my sex life -- well, what's that??
Thanks for any wisdom you can impart.
I would highly recommend that you consult with Dr. Andrew Cook in Los Gatos.
He specializes in chronic pelvic pain, interstitial cystitis and endometriosis. I am
almost pain free after many years of misery. His outfit is called Vital Health
I know your pain. It took me two years to convince my
primary care physician that this might be an issue for me,
and in the meantime, I found the best doctor ever to deal
with this issue. His name is Jerome Weiss. He is in San
Francisco, and is considered the pioneer in his field.
In my case, I had a stitch from a previous surgery that was
protruding into a spot in my urethra and causing
considerable pain and well as incontinence.
It took a few visits, but it was worth it. I am pain free.
He does some unusual things, but he knows his stuff. He
also has a full staff of alternative and support
I recommend him without hesitation.
I am also a long-term sufferer ( 20 yrs) of interstitial
cystitis (IC) and Chronic Pelvic Pain Syndrome (CPPS) and I
understand what those daily struggles look like. Since I'm
unable to take the medication I maintain a strict daily diet
by eliminating all the "bad'' things to eat (avoiding acidic
foods, caffeine, and alcohol, etc.) Having this condition
puts many restrictions on what we're able to eat and enjoy
and it is a daily chore.
I also drink aloe vera juice or gel, whichever your
preference (w/o citric acid, tasteless, etc) mixed with
blueberry juice or tea, especially, in the evenings and
several times a day. Make sure you check with your doctor,
but it has been working well for me.
I truly hope you get some relief soon. Hopefully, the aloe
vera juice or gel will provide you with some relief.
Hello, sorry to hear what you are going through, and I completely relate! I
was diagnosed with interstitial cystitis in february, after years of suffering
in pain and multiple uti's. I relate to how challenging it can be.
First off, I recommend a really great urologist, my is dr. Jon Floyd, with
golden gate urology, second, the medication elmrion has been life
changing!! And I can't emphasize enough, my diet change!! If you go to
the icnetwork.com, there is a great ''basic'' food list. It is a life altering
wealth of knowledge!!
There are many foods that can trigger a flare, I started very strictly with
''bladder friendly'' foods, then moved into the ''try it'' zone after about 6 -8
weeks. If I feel any cramping i immediately get a 16oz steamed milk,
(organic), with a little vanilla in it, it does the trick!
I can't emphasize the diet enough, it may seem overwhelming and
cumbersome at first, but so worth avoiding pain and uti's!
I'd had chronic UTIs off and on, then at age 28 was on antibiotics for
almost a year with no cure. Went to an old chinese Dr. He did
Acupuncture and gave me an herbal prescription I had to take to China
town herbal pharmacy to get filled. A week later I was not only cured,
but I never had another one. The Dr I saw is no longer around, but there
may be other Chinese Drs who can help. The American ''Oriental
Medicine Practitioners,'' who I've occasionally seen over the years never
came close to being as good.
I missed the original post but I have IC. The website Interstitial Cystitis
is super helpful. I control mine with diet, though it's very difficult, no
alcohol, citrus, tomatoes, spicy food and small amounts of other trigger foods.
It's worth it because I'm out of pain. I've tried acupuncture and supplements too.
Drinking water continuously throughout the day seems to help a lot too. Good
luck it is a challenge to manage this condition.
fellow IC sufferer
I have recently received a diagnosis of painful bladder
syndrome. Although I am not experiencing any pain, I have been
having a lot of frequency of urination and burning on and off.
This has started since I gave birth to my child. I did have
UTI and have taken medication for this, but the frequency of
urination is still there. Has anyone had any experience with
this and can recommend anything that might help or good doctors
to see for this? Thank you.
Sounds like you have Interstitial Cystitis, or Painful Bladder Syndrome is another
name for it. I developed this about 4 years ago. I had a regular old UTI, cultured
positive for E. Coli. Took antibiotics and the culture came back normal, but the
symptoms of frequency and pain never went away. Here I am 4 years later still
dealing with it. It is crucial that you see a Urologist who specializes in female
The only one I saw and did like a lot was Christopher Payne at Stanford Urology. I
know it is a bit of a trek. I believe there is also at least one urologist at UCSF who
specializes in female urology. Look on their website to find out if there is. I don't
think you will have any luck finding one in the East Bay. Most urologists are trained
and specialize in working with male urology issues (like prostate.)
Good luck, I know how painful this condition is. May I also highly recommend this
website. Interstitial Cystitis Network. Join their support forum. It is excellent. I have
met the woman who started it and still runs it and she is fantastic! It is a great,
great resource. Dietary changes can make a huge difference, you will find all that
information and LOTS more on this website.
Painful Bladder Syndrome Friend.
oh boy you have my sympathies. painful bladder syndrom is also
known as interstitial cystitis (ic). for those who don't know,
imagine the worst bladder infection you ever had and now
imagine that there's no cure, is often difficult to manage, no
clear cause and it never goes away. my first advice to the
poster is to get a clear diagnosis. this requires a complete
work-up including looking for obscure stds, kidney and bladder
studies. endometriosis can also cause these symptoms. this can
be done by some gyns but is usually done by urologists. kaiser
oakland and walnut creek have some people that specializes in
this. there are some treatments that might alleviate ic but you
need to be sure that this is what you have.
Cranberry juice, uva ursi, lots of water, and probiotics.
i just wanted to respond to the earlier post recommending chris
payne at stanford for interstitial cystitis. i saw him as well
and cannot recommend him. he is very well known as an i.c.
specialist. i saw him, got the diagnosis, and was
on my way to getting irrigated w/ dmso (sounds wonderful
doesn't it). fortunately i am married to a very astute
internist who thought my symptoms didn't quite match up w/ i.c.
long story short i went to a gyn and found out i had
endometriosis. chris works through residents, so maybe he
never heard all the info. either way it's a huge error.
anyway, that was a while ago and i'm still mad about it. the
moral of this story is don't get snookered by a reputation,
either of the doctor or the instution. there are equally good
(and nicer) doctors in our neighborhood, even if they don't
come w/ the buzz.
I experienced painful bladder symptoms for four years and
couldn't figure out what was causing it. My doctor eventually
settled on a diagnosis of IC, so I removed bladder irritating
foods and beverages from my diet. I took herbs and probiotics,
and drank lots of water and cranberry juice. I also went to an
acupuncturist for a few months. Although all of these things
provided some relief, it was very inconsistent and some days the
pain would be so severe regardless of what I was doing.
Then I went Mexico for a vacation and relaxed on the beach for a
week (I hadn't had a real vacation in five years). My symptoms
disappeared after the first day of the trip. I ate and drank
anything and everything and felt no pain. When I went back to
work the following week, the bladder pain returned. A few months
later I quit my job (which was stressful and not a good fit) and
within a few weeks the bladder pain disappeared. It's been nine
years and I'm virtually pain free. I will occasionally
experience a flare up during times of major stress, but now when
it happens I know it means I've taken on too much and need to
slow down, and then the pain goes away.
I'm in no way discouraging you from seeking additional medical
advice, but I wanted to share my story because I lived with these
symptoms for years and in the end found out that my body was
sending me a message. I hope this helps.
I didn't see your original post, but I had interstitial cystitis
for years. It took a long time to diagnose. I was diagnosed in
DC after a bladder hydrodistention and biopsy (not fun, but not
the end of the world). I was put on Elmiron 3 times a day, and
while it takes months to fully work, if it works for you it is a
lifesaver. I took it for two years and stopped when I started
trying to get pregnant almost 3 years ago. I have been symptom
free since. I saw Payne at Stanford when I arrived in CA and he
said that if Elmiron works for you most of the time you can go
off it after a while with no return of symptoms. I do agree that
he was very clinical with little bedside manner.
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