question about diagnosis

[cbaiz]

I posted this question in another section but haven't received any replies so maybe it was the wrong forum. My question was:

I was wondering if anyone knew if you have to be in a "flare" when you get a cystoscopy done for it to show any results. I haven't been able to find an answer to this in my reading on the web. I have had problems for about 2 1/2 years, but I go for months feeling pretty normal in between terrible episodes of pain and frequency that typically last about a month. My doctor has referred me to a urologist, but I live in Canada and you usually have to wait a few months to get in to see specialists. I'm having an episode now, but I have a feeling that by the time my appointment comes around, I'll be feeling OK, and I'm worried the urologist will say nothing's wrong if I don't have symptoms. Any insight on this?

thanks!!

[Stella1609]

It's really hard to say. Some people have visible signs of IC with very few symptoms, and some have lots of symptoms with very few visible signs. I would keep a really detailed symptom journal right now (what pain you feel and when, times you go to the bathroom) so if you aren't flaring when you go to see the uro, you can show him what a flare looks like for you.

[nekura]

No. Even people with bad pain may not show signs and people without IC can have irritated bladders from time to time, this is why the new guidelines say diagnose based off symptoms, not pictures.

[earthlady]

Keeping a journal is a good idea as to how often you flare and for how long. Jotting down what helps and what makes it worse is a good idea so you can relate this to the dr. I was in terrible pain in the beginning and my cysto with hydro showed a normal looking bladder. it doesn't matter if you are in the middle of a flare or not at the time, as they now can diagnose on symptoms alone. My current uro told me it was normal to have symptoms come and go with his condition until you have it well controlled.

[ChrisNes]

A lot of good information here; http://www.painful-bladder.org/pdf/Diagnosis&Treatment_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.