Cystitis - Complications 

Complications 

Interstitial cystitis

It's not clear what causes interstitial cystitis. Researchers are investigating whether the condition is inherited, or if it is part of a more general condition that causes inflammation.

Find out more about symptoms of urinary tract infections

Most cases of cystitis clear up on their own or with antibiotics. However, untreated bladder infections can cause kidney infections, which can be serious.

Although cystitis usually clears up on its own or with antibiotics, some people experience almost constant symptoms or recurring episodes. If no cause can be found, and the cystitis doesn't respond to antibiotics, you may have interstitial cystitis. 

Interstitial cystitis

Interstitial cystitis causes recurring discomfort in the bladder and pelvic area. Like cystitis, it can cause an urgent and frequent need to urinate. Other symptoms, and the level of pain it causes, can vary from person to person.

Some people may find it more painful when their bladder is full, or more painful when they urinate. Women may find the condition more painful during their period.

How common is interstitial cystitis?

In 2004, around 400,000 people in the UK had interstitial cystitis. This is likely to have increased since then.

Over 90 per cent of people with interstitial cystitis are women. On average it is diagnosed at around age 40.

What causes it?

It's not clear what causes interstitial cystitis. Researchers are investigating whether the condition is inherited, or if it is part of a more general condition that causes inflammation and, in some people, affects the bladder.

How is it treated?

Treatment can include:

  • medications, including painkillers and antidepressants
  • bladder distension – when the bladder is filled with water to increase its volume
  • bladder instillation – the bladder is filled with a solution that includes medication to reduce inflammation of the bladder walls
  • surgery, if other treatments haven't worked 

If you're diagnosed with interstitial cystitis, your GP or healthcare professional will explain the condition and the treatment options in more detail.

Some GPs may use the term 'painful bladder syndrome' (PBS) to describe a condition that causes pain but doesn't meet the criteria to be diagnosed as interstitial cystitis.

Find out more about:

Bladder
The bladder is a small organ near the pelvis that holds urine until it is ready to be passed from the body.
Inflammation
Inflammation is the body's response to infection, irritation or injury, which causes redness, swelling, pain and sometimes a feeling of heat in the affected area.
Pain
Pain is an unpleasant physical or emotional feeling that your body produces as a warning sign that it has been damaged.
Painkillers
Painkillers (analgesics) are medicines that relieve pain. For example paracetamol, aspirin and ibuprofen.

Last reviewed: 30/10/2011

Next review due: 30/10/2013

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Comments are personal views. Any information they give has not been checked and may not be accurate.

kareno2 said on 03 December 2011

Having frequently suffered cystitus in my 20's I am well aware of what the pain feels like - it's a pity GP's don't listen to that.

In the last 7 weeks I have visted 8 GP's been given 3 lots of antibiotics and as a consequence 2 Thrush treatments! Urine testing for nitrate but culture sent off showing "satisfactory".The advice of the GP's has been inconsistent with some harly listening to my level of pain being 9 out of 10 and urinating 24 times a day! I felt I had interstitial cystitus in February and actually spoke to an out of hours nurse who had the same condition.Two Gps suggested irritable ureatha. The best advice has been to take ibuprofen with co codamol. I have felt forced to pay private as I cannot tolerate the pain - initial xray of kidneys, ultra sound and consultation around £600! Cystoscopy next week - goodness knows how much that will cost! I asked to see a consultant who knows about interstitial cystius. I have lost faith in NHS doctors who simply don't listen to the patient. Its right - you need to research your symptoms and request a specialist who knows what they are talking about. I had to adopt the same approach to get my fibromyalgia diagnosed - within a year - which was long enough! This last week I have modified my diet - look at the definate no's such as coffee and chocolate. I was drinking lots of green tea things settled since I stopped. Hoping for diagnosis this week - at least expensive consultant recognises its in the bladder! Final moan- how come the symptoms many of us have are the same as bladder cancer and yet no one takes note!!
Oh and another thing - the bladder diary I've been asked to fill in just doesn't have enough sections!!

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joesgirlmillie said on 29 November 2011

I was diagnosed with IC after having my colon removed, but my IC ruins my life, I am in pain constantly, 2 cystoscopies showed firstly squamous metaplasia then IC. My consultant was meant to of ordered Elmiron for me to try (has to go via PCT for funding as not licenced in uk and expensive)just found out he hasnt put in for it...more lies. Ive had bladder instills they just made me worse, ended up in hospital for 5 days on a drip so dont work for everyone. At my wits end with this condition, too ill to work, i have 3-4 okish days out of 28, always made worse by my period, soon as my insides start to swell Im back off my feet in bed, bladder on fire, but never any bugs just sometimes blood. But the illness side makes me worse, have to take antisickness meds to even be able to eat and drink as nauseous 24.7. Antibiotics sometimes help but not when got it so bad. Done the diet thing, not much difference. Wud like to hear from anyone who gets it as severely as me with any tips, havent heard of a brilliant consultant yet ?

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Dlt_debz said on 20 October 2011

I have been suffering from chronic interstitial cystitis since March and was diagnosed last month by specialists performing a diagnostic cystoscopy, unlike some of the people who have commented on this thread my gp has been amazing and medicated my symptoms since it intialially flared up. it has changed my life, i can barely even do the 10 minute walk to the shops without needing to go and have been unable to work since July (although I am going to start gradually going back for a few hours a day starting from today on an adjusted work plan. it is going to be difficult as it has affected my psyhcologically as well so if i get even the slightest bit stressed i have to go to the toilet. my previous attempts at returning to work (i have been of 3 times with it now) have all failed due to the stress but really hoping that by going back this time it will help with the psyhcological sid of things

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Sian Peacock said on 18 September 2011

I agree with all the comments. Im 17 in November and I have been suffering with cystitis for at least 5 years. The symptoms have changed my life and I feel I dont want to travel long distances with fear that I wont be able to reach a toilet. I went to france this year and suffered while i was there which completely ruined what was meant to be an enjoyable holiday. I feel there could be more done to help as so many women suffer from cystitis in there lives.

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lucy83 said on 04 September 2011

I am 28 and have suffered from IC for a few years. I was lucky enough to have a job which offered private medical insurance and was able to get a diagnosis last year. If you don't have private healthcare then I would recommend that you keep pushing your GP for a referral. A simple procedure called a cystoscopy diagnoses IC. The trouble with interstitial cystitis is that you can have symptoms but no infection and often the GP things it is all in your head but never give up!

There is no simple cure to IC but you can get it under control. I have found the following to be helpful..... Cranberry tablets (as they are much more concentrated) and another natural supplement called D Mannose taken daily (you may have to look around to find this). I was also advised to cut alcohol, caffeine (this includes chocolate, tea & coffee) and spicy foods out of my diet until I was symptom free for at least 6 months - These foods irritate the bladder lining and you need to break the cycle by giving your bladder time to heal itself.

Longer term, I have found that cutting sugar, yeast, alcohol, caffeine and chilli out of my diet does seem it keep IC at bay. It isn't easy but I find that being pain free outweighs the hassle of a restricted diet. I completely agree with Cherry_Mays comment about trying to maintain an alkaline balance as I find sugar to be the worst trigger for IC.

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lindave said on 25 August 2011

I haven't been diagnosed yet and I feel with the research I have done that I have self diagnosed my condition. I have recently been diagnosed with Fibromyalgia which has its many other problems. I stated with toiletry problems around 18 months ago and its ongoing. I have had a cystoscopy and many many courses of antibiotics even though I have no infection. I have blood in my urine almost every time I have my water tested, I constantly need to urinate, I have painful Pelvic area. I have increased white cells in my sample which suggests my body is fighting something. I have been tested 3 times for Chlamadia and the doc now wants to test again even though all tests have come back normal. The doc is sending me back to urology but within a few minutes on being on the internet its clear to me exactly what the problem is.

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Cherry_Mays said on 05 August 2011

I am 19, and I think I am soon to be diagnosed officially with IC. I hope I can make it through until I see a specialist on the 17th, every night at the moment is a truly terrible and depressing.

This description is not informing at all, HOWEVER, there are theories and helpful doctors and urologists out there, but are unable to fully substantiate what they and their patients find, as the condition is so variable and unpredictable.

All I can say to anyone reading this, is demand to be referred to a urologist and you should be able to for free from your GP, although you may find you have to take a week's dose of antibiotics and have a sexual health screening to rule out everything.

While you are waiting for medication or treatments, sleepless nights can be terrible. So a thing that I find helps with the frequent urination, is creating a more alkali fluid in your bladder to bring down the irritation. Small amount of baking soda, avoiding lots of meats and yes, good old cranberry juice can also have a substantial effect.

I think it is absolutely appalling that I am left to sprawl through the internet, through countless articles of rubbish and money making sites aimed at making IC sufferers part with cash in order to buy recipes for "home remedies" (I know! disgusting!) and have to both diagnose and reduce symptoms myself. The physiological and insomniac effects this is having on me is ruining my life.

Come on NHS, pick up some speed on this issue, it is not an 'inconvenience', it can ruin lives.

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GemmaQ said on 23 April 2011

I have suffered with this condition for nearly 10 years and have only just received a correct diagnosis from my GP. I was simply handed a leaflet telling me I had urethral syndrome and told to drink more water and urinate after sex. I am sure that other sufferers know this will not combat the pain or overcome the frequency to urinate.

Before this I was referred on several occasions to a STI clinic with suspected chlamydia or simply told I just had to live with it.

My GP has not offered me any treatment for the condition and refused to refer me to a specialist, if anyone can offer me any advice I would be very grateful. This condition is severely affecting my life and personal relationships, it is painful and embarrassing.

BUPA and the Solihull and Birmingham Bladder Clinic both seem to offer comprehensive treatments, similar to those listed above on the NHS page. However, this will mean having to pay alot of money for treatments that surely should be available on the NHS.

My GP laughed when I told her about Bladder Instillation telling me it sounded ridiculous. This unfortunately seems to be the attitude that I have come up against for the last 9 years.

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GemmaQ said on 23 April 2011

I have suffered with this condition for nearly 10 years and have only just received a correct diagnosis from my GP. I was simply handed a leaflet telling me I had urethral syndrome and told to drink more water and urinate after sex. I am sure that other sufferers know this will not combat the pain or overcome the frequency to urinate.

Before this I was referred on several occasions to a STI clinic with suspected chlamydia or simply told I just had to live with it.

My GP has not offered me any treatment for the condition and refused to refer me to a specialist, if anyone can offer me any advice I would be very grateful. This condition is severely affecting my life and personal relationships, it is painful and embarrassing.

BUPA and the Solihull and Birmingham Bladder Clinic both seem to offer comprehensive treatments, similar to those listed above on the NHS page. However, this will mean having to pay alot of money for treatments that surely should be available on the NHS.

My GP laughed when I told her about Bladder Instillation telling me it sounded ridiculous. This unfortunately seems to be the attitude that I have come up against for the last 9 years.

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IC Claire said on 11 January 2011

I totally agree with the previous two comments. Having suffered for almost 10 years with symptoms, getting progressively worse, I have recently had a diagnosis of IC. Thinking this was a big part of the battle won, I am disappointed to find the so called specialists and healthcare professionals have been very unhelpfull and lacking in knowledge. So turning to the internet for more information to aid self help, again I am disappointed to find limited information which by no means appreciates the severity of the condition nor does it offer any directions for self help, which is a clear reflection of the service I have received from the NHS.

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ICamy said on 27 August 2010

To reiterate the previous comment, i think it is too wholey unacceptable that you have not produced more detail on interstitial cystitis. If over 400,000 people have to cope with it's devastating symptoms how do you not feel it necessary to include more information/hotlines/direct help.

It is no wonder i had to turn to private health cover for direct help, diagnosis and support through what have been some of the worst months of my life.

I am 18, and have been suffering only a year - god help the women who have struggled their whole life with the petty information and help you have detailed above.

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ICsammy said on 02 March 2010

I think the explanation you give on Interstitial cystitis is very weak considering it is a very complex debilitating disease to live with and the many added secondary chronic symptoms that can accompany I.C.

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