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Posts: 34
Reply with quote  #1 
Hi all, I'm a newcomer to this forum. I'm 52 and have been having bladder pain for nearly 3 years, every time my bladder fills, more painful the fuller it gets. I am currently on my 5th urologist and have had most of the urinary tract & kidney function investigations done. I have no infection, no cancer, no stones, no strictures, no incontinence, a mildly enlarged prostate, some haematuria and the continual bladder pain. My last GP referral suggested to the urologist it may be IC but it's not yet diagnosed. The urologist is confused as I did get urgency /frequency up to 20 times /day and 3-6 times per night, but when the GP prescribed Tolterodine (Detrol), it worked a treat for reducing the frequency / urgency but not the pain. The urologist says drugs like Tolterodine don't work if you have IC, so he is not sure if it is that. I recently had a Cystoscopy with hydrodistention and biopsies, which showed some haematuria but no clear IC diagnosis, still waiting on outcome of biopsies though.

A number of other forums indicate allergy related conditions tend to interplay with IC. I have asthma, allergic rhinitis, urticaria and gluten intolerance. I used to have IBS until I stopped Eating gluten.

From what I've read IC varies from person to person and is diagnosed by excluding everything else. In my case I think we've done that. Does this sound like IC and if so are there any NHS places in London that are better at diagnosing IC than others?

Posts: 1,761
Reply with quote  #2 
Hello Twiglet21
Welcome to our Forum, but so sorry to read that like so many you are struggling to find an answer to this dreadful dis-ease.
I hope you will find much to assist you here, and from replies from our Members

Here is an extract from the COB website( which has more information to help you)

Pain relief
Analgesics-Painkillers can help you to manage your pain. Various kinds of painkillers are available to help with different types and levels of pain. Analgesic Creams can be used to numb the urethra or vulva area.
Anti-Inflammatories are useful in the treatment of continuous or regular pain associated with inflammation. Some anti-inflammatories are available to purchase over the counter, whilst others are available only on prescription.
Anticonvulsants can be prescribed for chronic ongoing pain.
Tricyclics/Antidepressents such as Amitriptyline are commonly prescribed to help chronic pain conditions. This group of medication can block the transmission of pain in the spinal chord and brain. For some, this medication may have a sedative effect and as a result, the number of night time frequency episodes may be reduced.
This group of medication is designed to control the symptoms of bladder spasms or urge incontinence.

They can be used to increase the bladder’s capacity and reduce the need to pass urine frequently (frequency).

It is advised that you seek guidance from your medical practitioner in the event of any side effects connected with taking this medication.

Hydroxine Atarax® is an antihistamine that is used for treating allergies. It is used in the treatment of interstitial cystitis/painful bladder syndrome as it prevents the release of histamines that can cause inflammation. In the immediate term, it can improve nocturia (the need to pass urine at night). Sufferers of IC/PBS should normally see an improvement within a short space of time.
Cimetidine Tagamet® - More commonly used for healing stomach ulcers, this drug has also been found to be effective for some, in controlling symptoms of IC/PBS. For full details of Cimetidine survey, please contact us.
Elmiron® (Pentosan Polysulfate Sodium)
Pentosan Polysulfate Sodium (Elmiron®) is the first oral medicine that is specifically for Interstitial Cystitis, although it has previously been used for the prevention of blood clots. It is believed to work by protecting the bladder wall. Elmiron® is excreted in the urine and once the urine reaches the bladder, Elmiron® sticks to the exposed bladder walls and begins to replace the broken GAG defences. Elmiron® is at present, only available on a named-patient basis in the UK and may take up to six months to become fully effective.

To receive a fact sheet on Elmiron® - join us

If you contact the COB Office they will be able to advise you re a list of London contacts.Also if you become a Member of COB, you will have even more access to good reliable information, more than we can possibly cover  here on the Forum.

Do hope this will be of help , and do please keep posting.

Kind regards


Posts: 34
Reply with quote  #3 
Thanks for those suggestions.

So far I've tried Ibuprofen, Paracetamol, Gabapentin, Pregabalin and Amitriptyline.

Ibuprofen and Paracetamol became ineffective over time.  Gabapentin and Pregabalin didn't work and Amitriptyline worked a little bit but I had to stop it due to the side effects in combination with the Tolterodine.

I already take Fexofenadine (an anti-histamine) for my urticaria / allergic rhinitis which works well for those symptoms and have tried Montelukast in the past (that was ineffective too).  So my thinking is that maybe Atarax type anti-histamines won't be that effective if the Fexofenadine doesn't already address it.

Posts: 1,761
Reply with quote  #4 
Bless you. As we all say this is such a dreadful dis-ease, as we are all so different and react in different ways, so there is Never a one fix for all.. DOH!!!!

Do give the COB Office a call. it is only a small office so if they ask you to leave contact, someone WILL get back to you.

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This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

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