Understanding Interstitial Cystitis/Bladder Pain Syndrome

[music] It’s a disease that affects an estimated 5.5 million women and men in the United States, however only about.


[music]
It’s a disease that affects an estimated 5.5
million women and men in the United
States, however only about 1 million
patients are properly diagnosed and
treated. Interstitial cystitis
bladder pain syndrome is defined as an
unpleasant discomfort or sensation
related to the bladder and associated
with lower urinary tract symptoms
including frequency and urgency. Often
times patients lives are impacted far
beyond the physical symptoms. And we
traveled to Northern California to learn
more, take a look. Today Stacey
Coronado is meeting with her urologist
since her official diagnosis of
interstitial cystitis bladder pain syndrome
in 2010, these appointments have become a
part of her routine. For her it’s a
relief to finally have help eight years
ago she had no idea what was happening. I would
be out hiking with my friend– we’d take
long two our hikes– and on the hike I
would notice that I was feeling like I
had to go the bathroom and I thought oh
that’s really strange because I just
left home and I shouldn’t be feeling
that, but you know it would kind of go away and
I didn’t think twice about it at the
time until a couple months later when it
was coming back and I was having, feeling
like I needed to go the bathroom all the
time, all the time, all the time and
having constant feeling of having to
urinate. One time I expressed to
my doctor that I feel like I have
an elephant sitting right here on
my abdomen at all times. It’s just
so much pressure that you never have any
relief from it and it’s constant pain. I would
say that I probably went, used the
restroom 20-25 times a day, and at night
five, six times a night waking up to go
the bathroom but not really having to go
to the bathroom so it’s very frustrating. Sometimes it’s burning– which
is really uncomfortable– sometimes it’s
just strictly pain. A lot of times
for me it’s just constant pressure of having
to use the restroom and no matter how
often I go to I don’t have any relief
from that feeling. We’re so good it’s been a pretty
good week also so I can’t complain. As a first
grade teacher she would have to leave
her classroom repeatedly– Daily life
was a challenge. I don’t have a
job where I can just walk away and
say I need to use the restroom I’ll be
right back to 25 six-year-olds because it
just doesn’t work,
fortunately the way my classroom is set up
I have open doors with other teachers so
I would be able to open the door and my
colleagues were very supportive and
helpful and I would just run out and use
the restroom fairly close, it was pretty
quick and it didn’t help me to use the
restroom I still felt that constant
pressure but I just had to do what I had
to do. Often times when we’d go
somewhere I would, that’s what I would
worry about; can I make I,t how many bathroom
stops are we going to need to get to
Davis to see my kids at college, and
where could I go whenever
I went somewhere it was the first thing I said
was where’s the bathroom? Interstitial
cystitis is a poorly understood, but
identifiable disease. Patients
have specific lesions in the bladder
that can be biopsied can be followed, and
bladder pain syndrome patients have very
similar symptoms but they have normal
bladders. And it turns out that the two
conditions are not the same. According to
Dr. Payne proper diagnosis of ICBPS
comes with an in-depth consultation,
careful review of patients history, and
a thorough physical exam. We’re
trying to figure out where the pain is
coming from and we think that starts with a
good history, how did the problem
start, what was going on at the time, what
are the things to make the pain better,
and worse and then usually the only
routine testing that we might do on a
patient the first time would be to look
at the urine under the microscope, get
a urinalysis and culture, and
possibly getting a check of how much
urine is left over after they urinate of
post void residual. We find that that’s
typically enough to start treatment, to
make a working diagnosis. For the
bladder pain syndrome if we think that a
patient has lesions, then of course the key
test is to do a cystoscopy, to look in
the bladder, to see the lesions, to
biopsy the lesions. That would be fantastic I would
love to to see someone else and get a
second opinion. When I first received
the diagnosis I was extremely,
extremely uncomfortable and in pain and I
was freaking out basically and
crying all the time. Crying, crying, crying
and at work I’m crying, at home I’m
crying, everywhere I go I’m crying,
because I didn’t know what the future was
going to be for me. I didn’t know if I
was going to ever feel better, ever be
able to enjoy going on a trip with my
family, doing things with my family,
just things like that I was I was worried
that I would never get to do anything
enjoyable again. When I first met with Dr.
Payne I was really hopeful that I would
get some help, and he was as well like
you know there’s so many things we can do
and so many things that are available
to try. Stacy is a
frustrating–frustrating is not the right word, because
she’s not frustrating, but her problem is
frustrating– she had bladder pain
syndrome symptoms for a long time before
I started seeing her and we went through
her treatments and several of the
treatments that she had been given, at
least a couple of them initially, seemed
to be helping her and then overall
year-to-year she just kept getting worse. We thought were
gonna be able to add treatment, get her
completely free of symptoms, stabilize
things and maybe then in the long run
actually take her off medicine. We’ve never
been able to get her a hundred percent
free of symptoms, that’s been
particularly frustrating because even though
she functions at a very high level
in her day to day life she’s still
almost every day has some symptoms and with
her I’ve not been able to crack the code
on that one. Communication is key
between both patient and physician, it’s a
very real disease that can create
consternation for all involved. Aquinox is
interested in ICBPS because of the high
unmet medical need. There are over
five and a half million women and men in
the United States with ICBPS today yet only
a million of these patients have
been diagnosed and treated. And while
for some conditions a million might sound
like a lot of patients in this case
there are a few effective treatment options
so many of these patients are left in
continued pain, especially bladder pain. So
while patients may have a number of
options most of the patients find
themselves frustrated, not finding a
regimen that works right for them,
especially to manage the bladder pain. Only two of these therapies have
been US FDA approved over 20 years
ago. Thanks to Dr. Payne’s continued
treatment Stacy is making progress. It’s
improved immensely because he’s got me on
different medications, different routines,
and I’m feeling much, much better. I’m
not completely well I would say, but
I have improved to where I can work, I
can do anything that I want to do and
not necessarily worry all the time about
how I’m feeling. My best advice
would be to be your own advocate– it’s a
miserable condition to have and if you
can find someone– the right person– to
help you, then you can get help. We see an
opportunity to improve ICBPS awareness, hopefully increase
diagnosis, and if our clinical trial
program is successful, introduce a new and
effective treatment option for patients. If not,
hopefully we’ve advanced the science and
understanding of ICBPS through our
clinical trial program. Most
important take home message that it isn’t
one entity and therefore you need to work
with someone that will help you
understand where your problem is coming
from, to sect out your disorder and treat you
specifically rather than just doing an
algorithm that they think applies to
everybody that has those symptoms. My
youngest is graduating from college in
June and I’m looking forward to being
able to travel, go places, do things with
my husband, and knowing that I am in a
good place, I can manage my ICBPS and my
future looks great! So glad her future looks so
bright. Absolutely! And here are some
websites that will provide much more
information about ICBPS,
the first one; aqx Pharma dot com, you
can also look at IC help dot org or ICBPS tips.com. That was
a mouthful! I know! And if you
didn’t get all that, you can also visit our
website at thebalancingact.com and we
will be right back!

31 thoughts on “Understanding Interstitial Cystitis/Bladder Pain Syndrome”

  1. This is some bullshit. Sorry to say but it is. This is an EXTREMELY RARE case of what actually truly happens for a typical IC/BPS patient here in America today in 2019. Where is the news coverage on what it’s ljke for people like me??? For what it’s like for a 38 year old full time mother of 3 children who’s life has been turned upside down by this monster??? When her doctors give her the run around, don’t know ANYTHING about IC or what it really is, or how to actually help her & these are supposed to be some of the best doctors in Southern California???? Where is that story?!?!? Report on that one. That has more truth to it, than this fairytale ending.

  2. Even this dr has made completely contradicting statements. First he said ic and bps are different diseases. Then he says IC is with lesions whereas BPS has no lesions. Then he says BPD has lesions!! This just another example of the complete misunderstanding and explanation of this condition, if the dr cant even explain it properly how do they expect us patients to understand it??

  3. The last 10-12 years of my life have been controlled by IC. The pain at times is so severe, I just want to put a gun to my head and end it. It affects all parts of my life, from my marriage to socialising with friends and family. I have tried so many different medications and none seem to work. I've tried changing my diets with very little difference.
    I would love to hear from anyone who's managed to control their IC as I'm willing to try anything. I've been taking Elmiron for the past couple of years, plus strong painkillers but over the past few weeks, the symptoms have got worse. I've seen different urologists and they all seem a little lost as to what's the best course to take. I'm a man and to me, it's the worst pain I've ever experienced when it's at it peak.
    I would love any advice as I'd rather not go down the route of choosing the ultimate cure!! Thank you.

  4. I’ve been dealing with this the last five years and it’s awful and no wonder you end up in tears all the time because it wears on you after while this pain that you deal with every day especially the urgency and that bloating stomach I don’t understand why they don’t have a cure for this it’s like living with a UTI every day

  5. What helps me the most is take aloe vera gel tabs I get them from Amazon also Cysto Renew 2 each in the morning 2 each at night has been a big help daily

  6. I am from Austria Here is very very poorunderstoond pbs I have since since 2 years in thus condition horrible

  7. i have a terrible case of ic and bladder stones on top of that im highly considering the indiana pouch surgery i’ve had it since i was 15

  8. You shared very good information. My Aunt was suffering from this problem. She was very upset at that time. She went to Planet Ayurveda and started his treatment. Now she is fine. If you have this type of problem or any other type of health problem. You must go to Planet Ayurveda.

  9. I'm glad she is better, but unfortunately that is not the outcome for many, many IC patients. And some things the Dr said I disagree with.

  10. I wonder if she was ever tested for pelvic floor dysfunction. The fact that she was hiking she might have irritated her pelvic floor. Even if it is IC the majority of women with IC have pelvic floor dysfunction and she might need pelvic floor therapy to get rid of those remaining symptoms. I hope she is still doing well!

  11. Drink barley water and eats figs too and avoid tea coffee acidic foods and avoid bread that is white bread u can go for whole wheat bread

  12. I was diagnosed rather quickly back in 2004 when I was a 50 yo.  My uro doc was on top of this disease from the get-go; because, prostate issues were not interfering with his diagnosis.  He suspected one of three possible diagnoses:  TB of the bladder, CA of the bladder, or IC….My experience with the disease is flopping in and out of flares….pain is the biggest issue.  I am in pain 75% of my life.  I wake each day and wonder how I am gonna make it through the day…At night, I wonder how the hell am I gonna make it til morning.. I explain it to people like this: imagine someone takes a very hot screwdriver and shoves it up your urethra: there is an intense burning and stinging down my penis to my  scrotum and back to my anus …there are times I scream in pain and wish for death…My wife passed away 6 months ago and how I managed to care for her for a year and a half I will never know…It was true love, I believe….Now, the docs are being forced to cut back opioid use…I have intractable pain…I need a serious, compassionate physician to follow his/her Hippocratic Oath and find the level of pain relief I need.  Screw the opioid 'crisis'!!  Not treating the patient's pain is the crisis.   IC is a take-everyone-prisoner-type of illness.  After 16 years with this monster, I have a pretty fair understanding of how I can better cope:  I must stay completely away from trigger foods, control hydration (remember: the solution to pollution is dilution) and never let myself become dehydrated, day or night.   Get meds to help you sleep.  Sleep deprivation ads to stress which is a major trigger of symptoms. As a medical person, myself, I understand certain monikers in the field….If researchers or diagnosticians do not understand the physiology of disease they'd say it was idiopathic: a term which means they are clueless…Now, they have a new term that functions the same way.  They call it auto-immune….Don't be fooled…they know so little about this evil…I've tried it all, folks; and nothing has worked for me.  I hope your experience is not so cruel as mine.  I'm not here to sugar-coat this disease.  Here's some trivia for you: the third assisted-suicide with Kavorkian had IC…..Bummer.

  13. There needs to be more research to find a cure. IC is debilitating and misunderstood by so many people. Thank you Jill Osborne for the support and education you provide.

  14. Unpleasant discomfort or sensation of the bladder?  R U serious?  Unpleasant?  It's more like AAAAAAAAAAAAAAAAAAAH!!!!!  It feels like somebody is cramming a red hot screwdriver up my penis or your urethra.  Try to imagine that?  You can't!  Only my fellow IC'ers know what I'm talking about.  This video is so under the radar.  It tries to relate to help, but, it can't.  And, now, these docs are running from treating intractable pain, as seen in IC, because of the opioid "crisis".  The real crisis is taking the pain meds away from those with extremely painful disorders.  Get to a pain clinic.  These clinics are manned by pain specialists and/or anesthesiologists.  Work with them.  Pain control is the number one thing that doctors' Hippocratic oath is about.  They took the oath, now, we must pressure them to abide by it.

  15. IC is horrible!! I have had it now for 4 years and finally I’m somewhat under control. I take Elmiron, Gabapentin, Amitriptyline and Pyridium daily. I finally found the doctor who has me under control. I get a cystoscopy with hydrodistention every 4-6 months which help so much. But knowing that I will have to have these for the rest of my life is depressing. When it gets really bad like now waiting for my procedure on November 22, I have to take oxycodone as needed mostly at night because I work during the day. It really has affected my life so much. I understand everyone who has it. There are times where I pee and visible blood comes out. My last procedure I had to get hunner’s ulcers burned and now I just have glomerulerations everywhere which causes me to have blood in my urine. The best way I can describe it is feeling like having a UTI but 50 times worse everyday sometimes.

  16. I had this for 5 years it ended up being ureaplasma. moxifloxacin for 14 days cured it. All other drugs failed. I drink coffee all day long no problems.

  17. Idk if I have this but some days I would have pain and other days I wouldn't. It can vary from pain and the time I would have it but it usually starts whenever I have to pee or release pee. Sometimes my bladder feels like it's bloated and pressure or very stretched after urinating

  18. I have had this for like 5 years. In the beginning dr.'s would look at me like was a complete idiot, when I told them I have to pee all the time, but there is nothing there. I even ended up in the ER to have a ton of test, and nothing. Co workers would look at me go in and out of the bathroom, like "OMG, you were just in there!" I try to go grocery shopping, but my bladder is the only thing on my mind as I shop. It is a miserable way to live. Turning down events and hanging with friends. I really started to isolate myself. I finally found a dr. that said my issues were nerve/stress related. She said "Some people have migraines from stress. Some people get stomach issues from stress. Your stress goes straight to your bladder." She told me to take klonopin as needed, and it helped relax me and my bladder. I am not free of symptoms, but it has become so much better and I can function almost normally.

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