how does urodynamics help with diagnosis

[Laurieinwa]

just curious, i am not diagnosed, trying to find reason for my pain, had a urodynamics study to see what kind of surgery i needed for stress incontinence following surgery and wondered if something on the results sheet would lean towards an IC diagnosis

either my pain is from mesh from my prolapse surgery or IC or i am just going crazy

[ICNDonna]

For me urodynamics was a part of the ruling out process that was a part of my IC diagnosis.

Donna

[Mothergoose]

For me the test showed severe urinary retention and the cause of it.

I knew I had retention, but for what ever reason if the uro thought I had retention, then they didn't think I had IC, or if I had IC I didn't have retention.

I kept getting bounced back and forth for ages, and diagnoses kept changing, until one uro finally listened to all my symptoms and said I had bot.

Go figure I could have told them that ages ago.

They didn't actually diagnose IC from it, but it was just one more piece of the puzzle.

MG

[wolfaleena]

retention .....frequency

wondering if your retention has gotten any better and what type of treatment do you have for it.
I have retention, yet i have frequency constantly too! i don't have complete retention of course, but i have a goot bit of it... my frequency is about every 30 minutes - 45 minutes.. i have had biofeedback, pt, internal massage pelvic floor, pelvic floor work,
I take flomax and vaginal valium suppositores
Along with a ton of other meds for IC and pain management meds.
The retention is not Caused by other meds, because i had it before i started taking anything.
Over the many years that i have had IC the retention has gotten a tiny bit better, but is still there, and my frequency is always with me!!!!
Pain managment medication helps me with my pain somewhat. that is good...
BUT frequency and retention hamper my quality of life for sure!

I used to have the self cath for retention, but not now.... yeh!!

ANyone else have luck with anything that helped their retention or frequency.
I cannot take anything like Levsin or other anticholergincs cuz they put me into complete retention!

I would love to hear if any surgeries, treatments, medications have helped anyone... thanks a bunch

I just went to a new ic doc after a ton of years with another docotr. He did a urodynamics test.....
i had the Worsed time of my life trying to urinate after it was over and my bladder was holding about 400 cc. i had no idea my bladder was even that large of a capacity after having ic and these terrible symptoms for 20 years.... i thought it shrunk to size of a pea!!

I am very curious to see what this new ic doc' s opinoin is of my case... since i was seeing the same doc for soooo long.. This new doc may have a whole different approach that i am hoping will shed some new light on my treatment plan.

I hope and pray anyway. anyone listtening and if you would like to please say an extra prayer for me,,,, i have been suffering, like many of you,,, for soooo many many years... it would be so nice to have a quality of life back again. i cannot go too many places.. or travel any distance from home without having to run for a bathroom ..... it interferes, as you all know, with just about everything you try to do... life is so limited this way.
i have tried to make the best of it.... but WOW wouldn't it be great not to have to be going through this. I may be asking for the impossible , but i can try! Love and peace to you all thanks for listening

[Mothergoose]

I have no answers for you, just that since the last time I went into full retention my Dr. figures I need to be assest for the retention again, he is quite sure it has gotten worse.

I too have had IC for many years, many with out treatment. The retention came afterwards.

So lets both hope new uros have new ideas for us.

I too feel like I miss out on so much because of this.

Last time when I wwas in full retention I was holding 72 ozs of urine in my bladder by this tie I had it drained, I flet like I was 5 mos pregnate.

I figure i had my own hydro because IC symptoms have been a bit better, retention worse, until this weekend bladder pain was a bit better.

Keep me posted i will keep you posted, lets hope between the two uros we can find some help.

Most meds make my retention worse including alpha blockers eg flowmax, and I happen to be allergic to them too.

MG

[wolfaleena]

dear MG thanks for the response ... i didn't know that flomax could put you into retention. Geezz i have been on it for years. I can't believe how much you were retaining,,, oh, you poor thing! you must have been dying!

well, i see the new doc tomorrow and i will see what he is going to come up with. since i was diagnosed with IC 17 years ago by hydrodystention, i am not really sure why the new doc wanted a urodyanmic study on me.
I have IC and have been on tons of differnet med, treatments, had the interstim trial, have been in clinical studies, accupunture, pelvic floor stuff you name it,,, i have probably done it or taken it. so tomorrow i will ask him why he wanted the urodynamics done. But my diagnosis has been documented and have been seeing one of the more infamous IC docs for years,

I just can't get into the city any more to see the same doc..... way too much time in the car and going over the bridge and the traffic and lack of parking is out of control for me and my IC! (sounds like the name of a song "ME and my IC.) (Someithing i have unfortunately been singing too long)!!!!! LOL

Well, i hope everyone gets the answers that we all so desperately need
Anything useful that i hear from this new doc, i will be sure to pass along .... i hope this is not a waste of time!
Positive thoughts your way,
Wolfaleena

[Mothergoose]

My understanding is the uro-dynamics tests the function of your bladder, not really for IC more for the retention, or if IC has made you bladder to shrink very small they can tell how well it is functioning.

I went to y Dr. today I have had a uti, I got a lot sicker with it over the weekend.

I spoke to my Dr, yesterday and he asked me to come in and have some blood work done today, he felt I had caught a stomach bug on top of the uti.

I was yea that could be true but why is my retention getting so much worse? He said come in and we will do the blood/urine tests and see what they show.

So I went in and had them, I had not been able to pee since about 2pm yesterday.

The blood tests showed my sodium was low, probably from the flu, but he felt a intravenous would correct this and make me feel better.

He then wanted to feel my belly, I was retaining so much I could barely stand to have him touch me, I was in full retention again.

So off to the ER for me, first they couldn't get the IV line in, I don't have good veins, or so they say. Then some pain meds, and meds to help relax my bladder to see if I could go. After an hour and a half I finally said I wanted to be cathed. I also asked this time to drain as much as they could, they were quite surprised when they got 54 oz out. Not a surprise to me. After they decided no more was going to come out I said I would try to go pee before I left and since I am supposed to be recording my In's and outs for a week, I wanted a hat to pee in. I quite easily peed another 10 Oz's.

So I don't think he knows what to do now, just wait till I get into a new uro, I guess.

But not a fun day for me.

Let me know how your app goes.

MG

[nanawaggs]

Hi, Laurieinwa ~ Oh my goodness, this reminds me so much of what I've been through and I'm so sorry you're feeling so poorly.

2-1/2 years after they corrected my prolapse, stress incontinence and performed a hysterectomy (2007), I had to have the mesh from the prolapse removed . I had been in such horrible pain immediately following the surgery but the doc said to give it time. I thought I was crazy and just needed to "tough it out". By the time I finally decided the pain was just too much to tolerate (I wanted to have my bladder "ripped out", wanted to jump out of the car one day to go pee somewhere I hurt so bad), the mesh had actually eroded my vaginal wall. I was so fortunate to find a wonderful Dr who removed the mesh in Feb of 2010. Then in May 2010 he repaired the prolapse again, but with a different application that was more suited for my body. During the surgery he also diagnosed my IC....I'm certain it was a result of the surgery in 2007. I feel like I'm in such heavenly care between my Dr and his PA. They have repaired things surgically and gotten the IC/PFD pretty much under control.

If you need more info feel free to PM me. Blessing that you find what works to help you.

[WhitneyWonders]

I just had the urodynamics test done to rule out if it was overactive bladder or classic IC - well it was classic IC...i barely had any bladder contractions but the second my bladder was filled up the half the normal amount an adult can take - i was in so much pain. It stung so much and all I wanted to do was urinate except I couldn't with the catheter in - so had to take it out and go. It was actually a lot more painful than I expected...ever since I've had increased frequency and its really bad - it hurts so much - I've been peeing every 15 minutes. I actually had the test done Monday and last night it seemed to be unbearable - the frequency. Normally I can hold it for at least 2-2 1/2 hrs but this is really bad, I always feel like I have to go even when I just went. Has anyone else had this problem after the urodynamic test? or after being cathed? Just curious..its driving me nuts. I keep racking my brain if I did anything diet wise, but i've only been drinking water and been really good...i don't know. Thanks for any feedback!!

[Mothergoose]

Happens to me all the time unless they use a peds cath on me, and for a urodynamics test they would not have used a small cath.

Hope it passes fast for you. MG

[ChrisNes]

A lot of good information here; http://www.painful-bladder.org/pdf/D...tment_IPBF.pdf

IC is not psychosomatic
Although many patients may experience a worsening of their IC symptoms as a result of physical or
psychological stress, it is particularly important to emphasize that stress as such is not believed to be
a cause of IC and IC is not a psychosomatic illness. The pain, frequency and urgency and consequent
lack of proper sleep experienced by IC patients and the impact of the disease on every aspect of the
patient’s life may themselves be a significant cause of not only total exhaustion, but also stress,
tension, anxiety and depression.
Impact on family life and relationships
IC has an impact on the entire family from many points of view. It alters your relationships with your
partner and children because your bladder condition means that you cannot act like a normal parent
or a normal partner. As an IC patient you are tired and irritable from lack of proper sleep, from
coping with the pain and from the constant trips to the bathroom. The inability to cope, to look after
the family, to do normal things with your partner and children, may give the patient a sense of guilt.
Patients may be so anxious about when the next unpredictable flare is going to occur that they try to
do too much at home for the family and thereby actually induce a flare. Other patients may suffer
from continuous unrelenting pain that makes them so tired that they are continually exhausted.
Members of the family don’t understand IC at all because they can’t see anything wrong on the
outside. So unless they are very understanding, they may become resentful at the impact on their
lives. If available, family counselling may help family members to understand the problems of the
patient and to help the patient to solve the needs of the family in a low-stress way.

http://www.auanet.org/content/guidelines-and-quality-care/clinical-guidelines.cfm?sub=icbps

Videos of cystoscopies can be seen on the ESSIC website at: http://www.essic.eu/videomenu.html
Diagnosis a relief
Many patients will have seen numerous doctors and specialists before finally getting the right
diagnosis. Patients who, despite seeing innumerable different doctors, still have no diagnosis can
become absolutely desperate with pain, frequency and frustration to the point of being suicidal. Many
will have been told time and time again that "it's all in the mind". It can therefore initially come as an
immense relief to a patient to be given the diagnosis of IC, a disease that actually has a name to it.
Patients feel that their long history of pain and debilitating symptoms is at last being taken seriously by
the medical profession.
Important: Negative test results do not necessarily mean that a patient does not have IC
Even after all these investigations have been carried out and if the results are negative, this still does
not necessarily mean that the patient does not have IC. Some patients may exhibit no abnormalities
during the above investigations, while nevertheless displaying all the characteristic symptoms of
interstitial cystitis. The most important part of the investigations is to exclude all other identifiable
causes of the symptoms (so-called confusable diseases).
Exclusion of confusable disorders + IC symptoms = IC
Pain management should
play an important role. If
the pain is very severe
and fails to respond to
standard treatment, a
pain clinic referral may be
advisable. No patient
should be left in pain!
Bladder hydrodistension or inflation (stretching)
Bladder hydrodistension or stretching is not only used for diagnostic purposes but also sometimes for
the treatment of interstitial cystitis in selected patients. Distension of the bladder has been used to
treat IC patients since 1930 with varying results. Distension is carried out by filling the bladder above
its known capacity. A well-known procedure is the Helmstein method where, under epidural
anaesthesia, the bladder is stretched for three to six hours by means of a balloon inserted in the
bladder. Distension can cause temporary exacerbation of symptoms in IC patients for a few days.
Results of this procedure are variable and the duration of the improvement unpredictable. It is
currently thought to have a beneficial effect in 30%-50% of patients. Many patients report that their
symptoms return within three months. Regarding the role and value of hydrodistension as a therapy,
recent studies indicate that it may improve symptoms in only a minority of patients. Hydrodistension
should be undertaken only with the greatest caution in patients where Hunner’s lesions are known or
suspected to be present due to the high risk of bladder perforation and subsequent bleeding.