Cystitis - Interstitial cystitis 

Interstitial cystitis 

Painful bladder syndrome (PBS)

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.

Interstitial cystitis causes recurring discomfort in the bladder and pelvic area. The symptoms vary between individuals, but some people can experience intense pain.

The pelvic pain may increase with a full bladder or when urinating.

Like regular cystitis, interstitial cystitis can cause an urgent and frequent need to urinate. However, the condition doesn't respond to treatment with antibiotics as it is not caused by a bacterial infection.

Around 400,000 people in the UK have interstitial cystitis. More than 90% of these cases are in women. It's often diagnosed at around the age of 40.

What causes interstitial cystitis?

It's not clear what causes interstitial cystitis, but researchers are investigating whether the condition is inherited. It also may be associated with other conditions, such as irritable bowel syndrome and fibromyalgia, as many women with interstitial cystitis also have these conditions.

Another theory is that one of the protective layers of the bladder wall may "leak" in people with interstitial cystitis, allowing chemicals in the urine to irritate the bladder.

People who have interstitial cystitis often have small areas of scarring, stiffness or bleeding on the wall of their bladder. Around 5-10% of people with interstitial cystitis have patches of inflammation and broken skin in the bladder, which leads to more severe symptoms. These are known as Hunner's ulcers.

Read more information about interstitial cystitis on The Cystitis and Overactive Bladder Foundation website.

Lifestyle changes

It may be possible to reduce the symptoms of interstitial cystitis by making some lifestyle changes.

Clothing

Avoid clothes and belts that are tight fitting, especially if they put pressure on your waist or tummy.

Smoking

There is some evidence that smoking can make the symptoms of interstitial cystitis worse.

Smoking is also a potential cause of bladder cancer, so it is recommended that you quit if you smoke.

Get help to stop smoking or read more information about treatments to help quit smoking.

Stress

Stress is thought to contribute to a flare-up of symptoms. It may help to try stress relieving techniques such as deep breathing and muscle relaxation.

Read more information about stress and ways to relieve stress.

Exercise

Regular exercise may help to reduce stress and improve your physical and mental health.

Simple stretching exercises may also help to reduce symptoms.

Read more about the benefits of exercise and a wide range of information on health and fitness.

Diet

There is currently no scientific evidence that changes to your diet will benefit interstitial cystitis, although some people believe eliminating certain food or drinks can improve symptoms.

Speak to your doctor before making any changes to your diet, as it is important to maintain a healthy, balanced diet.

Treating interstitial cystitis

There is no single treatment that is effective for every person with interstitial cystitis. As the symptoms can vary between individuals, you may need to try several treatments to find one that works for you.

It is important to discuss the options with your doctor first to help decide which treatments may benefit you.

Treatment can include:

  • physiotherapy – this can help relieve any pelvic pain caused by muscles or surrounding tissue
  • painkillers – such as aspirin and ibuprofen
  • certain antidepressants – these may reduce pain and improve other symptoms
  • certain antihistamines – these may reduce the frequency of needing to urinate and improve other symptoms
  • bladder distension (where the bladder is filled with water to increase its volume) – this may help to temporarily relieve symptoms within a week or two after the procedure
  • bladder instillation (where the bladder is filled with a solution that includes medication to reduce inflammation of the bladder walls) – this may help to temporarily relieve symptoms within three to four weeks after the procedure
  • transcutaneous electrical nerve stimulation – where mild electric pulses are used to block or reduce pain signals going to the spinal cord and brain

Surgery

If other treatments haven't worked, surgery may be an option. However, surgery is rarely used to treat interstitial cystitis.

Surgical options may include:

  • treating Hunner's ulcers with electricity or lasers (fulguration)
  • removing Hunner's ulcers (resection)
  • making the bladder larger using part of the small intestine (augmentation) – this usually includes removing any inflamed areas of the bladder
  • in very rare cases, bladder removal

Surgery is rarely used and the potential risks and benefits should be discussed with a surgeon before making a decision.

Page last reviewed: 07/11/2013

Next review due: 07/11/2015

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Comments

The 25 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Georginaeve said on 12 July 2014

So much sadness that other women are in the same pain I am

I have been suffering with what I believe to be IC since early teens, I have always suffered massively with bladder, kidney infections and cystitis and I have severe back pain around my pelvis as well. Doctors keep dismissing me saying to have physio and I have tried everything

It's starting to affect my quality of life and I often go to bed crying because of the pain.

I don't want my fiancé to continue to see me in so much pain.

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Misa86 said on 09 May 2014

I've just had a rigid cystoscopy a couple of days ago and I was told that it looked like I had IC.I just wanted to say to Looley that I've been ill for three years and I became ill about two months into my relationship with my current boyfriend. I've been there as well where I thought I'd never have a wedding day,never want to have children and I thought my boyfriend would get bored.If he's stayed with you this long he must love you a lot and you should hold onto him because he's the one who deserves to be with you when you feel better.

When I 1st got ill I had a urine infection for 8 weeks and after that they told me I had IBS.For the next two years I had at least 3 infections a year,1 kidney infection and kidney stones.It got so bad I had to be on antibiotics for a year but after that I didn't have any more infections.So if you do get infections or cystitis all the time try asking your doctor about being on antibiotics long term.

I'd been having pain during sex on and off since I had the eight week infection and the doctors didn't do much,I went to the gynaecologist and they didn't do much.Then I went again a few months ago and one of the doctors suggested IC.One of the specialists said she was wrong and they gave me some cream.

I had a follow up appointment with the urologist so I decided to ask him.He asked me how my symptoms were and I said they're ok but it would be nice not to have to go to the toilet every 40mins.He suggested botox but that was a bit scary,sometimes if the botox works too well it means you can't wee and have to use a catheter until it wears off.This is rare though and is something that can help people.He told me I could have a cystoscopy to help my symptoms and check for IC.I had it done and in the end they took a biopsy.If they don't find anything it will be IC.My advice is to find another doctor until you are happy and don't assume they have checked every avenue,because my urologist hadn't and 3 years later I have some results.

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Looley said on 27 March 2014

I'm nearly 24 and I've been suffering with cystitis repeatedly since I was 16. Medication never seems to work as it keeps coming back. I've had kidney and bladder scans - fine they say. And 3 cystocopys. All ok, however my last one was in September (2013) and my follow up appointment has been cancelled twice and is now in July (2014). So I don't know. I've had 3 attacks since and I've rang the hospital, but I get no call back. I've started a new f/t job and have had days off already and that's looking bad on me and it could affect my career eventually.
Too many of us are suffering because of this and doctors and specialists need to look into this problem more. We are getting ignored and bombarded with short course antibiotics that don't work.
I've come to the conclusion I have ic even though it hasn't been diagnosed. But I have been told I will have this problem for life. This saddens me to the fullest and makes me rethink about having children and staying with my partner of 6 years. It is life ruining.

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CL94 said on 18 January 2014

I'm nearly 20 and suffered from what I believe is IC for the past 16 months. During this time I have been to the doctors at least 20 times in which they have sent me away with water infection antibiotics every single time.

These never work but explaining this to a doctor doesnt make the slightest bit of difference as they are certain it is just a UTI.

I have been referred to the sexual health clinic twice in which everything has come back clear each time. I have also been and had an ultrasound over my bladder and kidneys in which they sent me on my way again claiming everything is fine.

I am now pushing away my family due to the amount of 'moaning' I do about the pain. I have been with my partner nearly 2 years and sex is becoming an issue as I am in so much pain. I cannot go out with my friends as drinking alcohol makes the next day difficult to cope.

Every morning when I urinate it is awfully painful and soothes throughout the day however I've used a hot water bottle that much to soothe the pain I have now scarred and burnt the top of my thighs and groin with the heat.

I study a degree in sport however this condition is making my studies downfal because I find it difficult to attend a lot of the time.

I find it disgusting that after 16 months I've seen several doctors and specialists yet I believe from my own research I have found what I think is the problem.

I feel for everyone on here I know how much this can ruin a persons life and I am becoming more depressed as the time goes on. I am due to have a cystocopy finally on tuesday and hoping for a diagnosis as I am reaching breaking point.

This forum has really helped me!





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Atmywitsend said on 29 April 2013

I am 25 and have had symptoms of ic since childhood. Only now at 7 weeks pregnant after almost 2 years of investigations have I been given a diagnosis. Treatment during pregnancy is not an option. Although the pain was constant but only really severe twice a week I was capable of working full time as long as I limited my fluid intake to below 500ml a day and got up for work 3 and half hours early. Through trial and error not medical advice I had already cut out all caffeine and alcohol. With my pregnancy I cannot move. The pain, urgency and frequency have increased a hundred fold and today I will find out if I will have to give up my career. I have used holidays to have ops and investigations for the last 2 years. Ic has ruined my life and its sapping the excitement out of my pregnancy. I live in hope that further research and increased understanding from my medical colleagues may improve the quality of life of those suffering from ic and lead to an increased understanding of the challenges it presents to all aspects of their patients lives. When you find an understanding clinician it makes all the difference in the world.

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icPatMteresa said on 17 March 2013

For all you suffers from IC remember you are not alone. I attend a support grp in my local hospital and this is great, like minds and experts in IC.
I have to wee up to 60x in 24hr period and the pain is horrendous. I have read some research which compares the pain with patients who have end stage cancer, pain, transition in labour and childbirth and passing a kidney stone. I wondered why I was having problems mobilising when the pain is really bad, Nevertheless not much research found on the impact IC has on mobility. How do other survivers of IC find this? I have been offered Lidocainee infusion and a sacral Neuromodulation ie pace maker for the pain. Has anyone any experience of either of these treatrments?

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Kimi16 said on 06 March 2013

I have IC and don't know if DLA is paid to those of us who have it, someone suggested I applied for it as I've recently been diagnosed after much pain for 3/4 years. I work p/t and have good management (a few senior doctors on the staff) so have been able to explain my frequent need for the loo to my supervisor. My working life has been affected by IC pain, so I’ve been unemployed & on ESA. Atos Healthcare do not care as the private company is tasked to stop all claims for incapacity benefit. You will not see a consultant at Atos so tape the interview if it is forced upon you. The company is paid to stop your money.

Regards IC I feel the urge to go but it takes ages to get a flow of urine - the full up bladder feeling is painful and I sit on the loo for up to 30 mins before I can pass urine. For the past 2 years I've even woken up in the night with bladder pain, I go to the loo up to 5 times during the night between the hours of 12 pm to 6 am. This makes me tired & irritable most of the day.

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icPatMteresa said on 23 February 2013

Hi I have IC and it is ruining my life.
I am not in work attend a tribunal for DLA

Has anyone been able to make a successful DLA claim?

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hhhhmmm said on 20 November 2012

Continuation from my previous comment...............
Does anyone know of any preventative measures? I have heard about diet but tried this before with IBS and did not help although I have realised Caffeine affects both my IC and IBS. There seems to be more American websites on this than UK ones and I agree the NHS needs to sort this out and educate professionals and patients more. Personally I would like to see someone who specialises in IC I also think someone needs to oversee these comments from the NHS to advise those who are stuck. There is a help link at the bottom of this page which I will try.

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hhhhmmm said on 20 November 2012

I have suffered with IC for 15 years although I have never been given a diagnosis or information on it but I have been treated for it. I like everyone else it would seem went through misdiagnosis and being told nothing was wrong. I eventually saw a different doctor (D1) who said he would refer me if one last thing did not work Hydroxyzine Hydrochloride. This is well known for being a anti depressant but it is an antihistamine and that is the part that makes it work- it is not to do with your head! To my amazement this worked and I was quite happy for a long time, I had to increase the dose in hay fever season though. Recently I have wanted to start a family.
I visited a different doctor (D2) who advised me to come off my tablets if I'm trying for a baby and I did. My symptoms came back approximately a month later and I contacted dr1 who was unsympathetic and told me to put my future child first. Nether mind the fact I can't try for a child when I am in agony or even go to work. I spoke to Dr 2 again who was sympathetic and suggested putting me onto Piriton 1 a day- this did not work so he increased it to 3 a day which did. However if I become pregnant I need to come off this straight away which worries me as it would not be good for me or the baby in the sense of pain and stress and not being able to work.

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doots said on 12 September 2012

Over a week I have noticed in bed my urgency to urinate, i squeeze and rock because my bladder feels fuller. I now feel i cant make it to the toilet in time. Yesterday I noticed i urinated every few minutes small amounts, a feeling of something pressing down inside me, perhaps on the bladder, a sensation which Im not sure is pain, but very uncomfortable when I urinate.
Ive never had such severe symptoms before. I am not pregnant, had no sex, but do have type 2 diabetes. I went to the toilet 4 times in the space of say 20-30 minutes, bladder feeling full, but yet empty. Is this cystitis?

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Scabbydog1 said on 06 July 2012

Hi

I have had all these symptons since I was 14 and had all the usual responses you guys have had
I finally went private and had a camera search of my bladder and it was shown to contain thousand and thousands of scars from old infections
I have recently seen another dr and he said he was sending me for a bladder distention and antibacterial wash of my bladder
I am happy to report I have had no symptoms since my op in April they have also discovered kidney stones
Don't give up girls keep fighting demand to be dealt with and referred to a urologist and if your still not happy ask for further tests untill you get your answers I am now 47 thats 34 years I put up with the offhandedness of the NHS befor ethey finally did some tests and found out they were the ones who didn't knopw what they were talking about and I was right when I said I was having too many infections about 1 or 2 every 3 weeks by the end but really just never being given a long enough dose of the correct medication to get fid of the original infection
a two week course is not enough my last cousre lasted 2 years on a low dose 100mg a day of Trimithorprin before they finally got on top of it and put me up for surgery

Stand up for yourselves because no one else feels the pain and discomfort and emarrasment that people like us do when we have to tell our partners day after day no sex please were infected again

Sorry for the rant girls but it has taken a long time for me to get treatment and I thought it was just me but I am beginning to realise after reading several sites that I am one of thousands and it can all be stopped so easily

I will sign off now before you all ban me from the site

thanks for listening to the moan
Scabbydog1

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VickyL1991 said on 18 April 2012

Im only 20 & have had what i continuously get told is 'cystitis' 9 times now... its ridiculously painful & has become particularly more frequent in the last 6 months or so especially every time i have sex. Ive tried the whole urinating before & after sex.. drinking loads afterwards etc.. but nothing works! Every time i get given the exact same antibiotic 'trimethoprim' i've only now after the 9th time of getting it been given a urine sample after begging them to do one but they took the sample after they'd already started me on antibiotics so i was told 'i had to wait until the next time i got it to do another test' each time i've been to the doctors they've given me a list of things to 'prevent me from getting it again' ... i've tried everything! My life revolves around paranoia thinking everything i do will lead to me getting it again!

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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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