Conditions
Interstitial Cystitis
Cystitis can be an embarrassing condition – the word’s gotten round that it can be caused by vigorous sex. However, interstitial cystitis, sometimes called ‘painful bladder syndrome’ is quite different. It refers to when the bladder has been inflamed for a long period of time, and this is not caused by bacteria like ordinary cystitis. In fact, the causes of this condition are unknown. Interstitial cystitis causes recurring and sometimes fairly intense pain in the pelvic area, as well as an increased need to urinate. Sufferers may experience the need to pass urine up to around 60 times a day, and the urgent need to pass urine can cause pain and spasms in the vagina. Pain can occur in the urethra (the passage which transports urine), the abdomen (tummy) and the vagina, and sex can make the pain worse. Unfortunately with this condition, symptoms are often constant or
recurring. The causes of interstitial cystitis may be unclear, but there are ways of treating it. Medication can be given for the pain, and surgery can be used as a last resort, but there are a couple of treatments for the bladder that can help. One is
bladder distension, where the bladder is filled with water to make it capable of holding larger amounts of urine. Another is called bladder instillation, and again the bladder is filled up but with a medicated solution that can improve the inflammation inside
the bladder.
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I am 15 and I have had 2 urine infections in about 2 years. I have found a lump inside my vagina and it has been there for about a month and I am too embarrassed to go to the doctor about it, because I am waiting until I have had my period, but my period is already 3 days late and I am starting to worry if I am pregnant. But anyway, the lump is almost the size of a squash ball, and I have recently discovered that whenever I poke it, some urine tends to come out and it seems to get smaller. Could this be a sign of IC? Please help, I am starting to get worried
I have suffered from cystitis /uti's since i was about 8! Finally after years of tears and early morning visits to a&e in extreme pain i was referred to gyneocology aged 19/20! Since then ive had two cystoscopies and urethral dilatations . Since these procedures my symptoms are sooo much better no more sleepless nights no more year long prescriptions of antibiotics although i still have bad days at least twice a week usually worse when approaching a period the pain is more so in my urethra these days instead of full blown uti and it can still get pretty painful but ive learnt to put up with it. Im angry it took so long for something to be done and hope it can be cured as it can make your life a misery at times!
Also a few things that i swear by that might not work for everybody but i cant go to bed wolithout drinking a pint of water or more befpre hand which helps my pain after the first pee of the morning and you cannot drink enough water!! Very obvious answer but if you keep it regular your life becomes alot easier, also pee before bed and afyer sex and cut out fizzy drinks etc! I stopped smoking too !
I have been suffering symptoms and having urine infections since I was 18. It took about 5 years before I was diagnosed with IC. I have had bladder stretches, installations, cystoscopies, you name it and I have probably had it. I am unable to work as I only sleep about 2 hours a night as I get up to wee about 15 to 20 times. I have such severe pain that I am on morphine (30mgs twice a day) so I am unable to drive or work, I also take oral morphine on days when I cannot get out of bed and am crying with the pain. Now the powers that be have decided that I am fit for work and are taking away my benefit, I have a year to find a job or I lose my money. My IC is so bad I cant even go to the job centre for the interview so its being done over the phone, so how can I work. I am now considering asking to have my bladder removed. Has anyone else had this problem?
Hi Amanda, Have you tried changing your diet? I was diagnosed as having IC 2 years ago and After drastically changing my diet would say have had about 60% improvement in symptoms. There is an American website called the IC Network which I have found a great help and you can find a Bladder friendly diet there. Basically remove all foods that irritate the bladder especially acidic foods, citrus, tomatoes etc. I was in constant agony for two years and unable to work or function normally, so I totally sympathise, I wouldn't wish this pain on my worst enemy. When I told my doctor I was going to try changing my diet she was very unsupportive and said it wouldn't help and would be too hard to stick to! Not very inspiring at all. But I did it and believe me it worked, I now know That if I eat the wrong thing I'll pay for it but at least that's my choice. Good luck, I hope this helps. Jane x
Hi I am in the exact same position as you!! the DWP do not recognise IC as a serious condition. I have actually said at my appeal that i wished i had Cancer or a limp as they would know what to treat or cure me with!! I have recently been told there is nothing more the urology department can do for me and it is now all down to the pain clinic! apparently by having ur bladder bypassed it only takes the function away not the pain and i have been advised that they will not remove my bladder. I had a fantastic job and the company did acknowledge that i had serious health problems but i can now longer commit to any job as i am in too much pain!! i wish and hope that a cure will be found but in the mean time........good luck!
Thanks to everyone for your suggestions. I tried changing my diet when I first got diagnosed and I am afraid it didnt make any difference to my symptoms. I was very careful about what I ate for about 8 months and I didnt have any change in the severity of my symptoms. I drink plenty of water during the day to keep my urine as diluted as possible otherwise it feels like acid in my bladder and I keep bottles of water by my bed at night. I honestly dont know how much more of this I can take...I have only been married for 5 years and the sex has already stopped (to be honest it was only about once a month anyway)as I couldnt handle the pain, bleeding and infections. Not only that but it became like a military operation with both of us making sure we were spotlessly clean everywhere in an effort to stop any infection starting (didnt work) and killed the mood. I am having parts of my bladder burned away on the 29th of June so that will be fun, will let you know if it makes any difference.
Hi ever since i have been 3 i have got bladder infections atlease a couple times a year. i stopped getting them from the age of 11 and then when i started having sex they started up again . When i split up with my partner the infections stopped again. When i got a new partner i started getting the infections again and i get an infection everytime i have sex. I have also always got pain deep inside during sex as if its pushing against something. When ever i go to the doctors they say i have bacteria and blood in my urine so im not sure if it is this as it says its not caused by bacteria? i would really apreciate it if someone could help as i can not take much more of it.
Exactly The Same Scenario Happened To Me! Almost Like Reading My Life Story! Not Sure If We Are Just Prone To UTI's Because Of Sexual Intercourse Or What? I Do Happen To Have, Chronic IC. You May Have It As Well. Also, Perhaps You Have Not Had The Correct Antibiotic To Clear The Infections? Many Uro & GYNO Things Can Cause Symptoms Of IC ... I Would Definitely SEE Your Doctor About This. Hope I Helped Some. Healing Hugs. xo's
Hello, I had a similar problem, kept going to the doctors with what everyone thought was bladder infections, as I had blood in my urine the doctors put me on antibiotics and sent a sample off just to confirm the infection but they kept coming back clear of infections. So eventually I was sent to a urologist and had a Cystoscopy and by process of elimination was diagnosed with Interstital cystitis. Interstital cystitis is such a grey area I had to go through many different treatments to find the one that worked best for me. One thing that the urologist told me to do in the beginning was to cut out anything slightly acidic in my diet. This includes most fruits, (besides blueberries) citric acid, tomatoes, etc. If you put “interstitial cystitis what not to eat” in Google you should be able to find a list. I hope this helps.
I too had the same situation and I have bacteria and blood in my urine... but when urine is sent to lab the bacteria never grows. For an ic patient it is normal for blood to be presemt. I have IC and it sucks. The only reason it is embarrassing is because of peoples misconceptions.
I agree, you say Interstitial Cystitis and people just say "we all get abit of cystitis from time to time". It makes me so angry and sad. I just call it Painful bladder syndrome now. But even the name PBS is an understatement! x
Hi all, I started off with bowel probs, had a total colectomy and now I have severe IC and its ruining my life, my consultant said after 2 cystoscopies and seeing how bad my bladder was, to try instills which I may add helped the irritation but made me ill for 6 months after id had the treatments each week i got more and more unwell so I cant have anymore. My consultant has applied for Elmiron after telling me how expensive it is, but apar i have to get funding. How do i check he has done this as Im not convinced, ive asked for committee dates and funding information but heard nothing. Been waiting nearly 6 months and just come out of hospital again with bad flare up. Im so ill, i get one ok week then 3 weeks in bed in agony, sickness, tiredness etc. I know you can buy elmiron abroad but not sure where to start?
Hello, I have been diagnosed with IC and I have been living with it for over 18 years now. Don't despair - it does get easier to cope with. I gave up drinking, smoking and all the other bad things over the years, and they really didn't make any difference. The only thing I can suggest is that sometimes Ural Alkaliser (an Australia brand name - I don't know what its called overseas) does ease the symptons - similar to how it does for normal Cystitis. STRESS is the number one thing that brings it on for me. So the less you stress about it the better it will be - I know that it is easier said than done, and it is awfully disrupting to your lifestyle, but try not to dwell on it. Its taken me years to get here - but it is the only thing that has given me any relief. Chin up everyone - you are not alone.
I go to the toilet two to three times a night, I get a feeling like I can't hold my wee when I've had a drink and I had pain in my urinary tract after weeing
I Live in Melbourne Australia and have suffered this condition since i was 16 years old. I was told it was part of my depression, i needed to up my medication and that i was imagining the pain for attention seekinhg reasons. I actually began to believe it until the pain got so bad that i was passing out at work because of it and i constantly had UTI's every second week. It almost killed my career as a disability nurse and definately killed my relationship with my ex fiance. I have tried DMSO treatment, Botox treatement and some medications. The pain has got so bad that i am taking panadene forte and mercyndol forte just to get through my working day without crying in tears from the pain. I was told about a radical surgery where they insert a small device into your back and it stops all the nerves going to your stomach. it is about 10 thousand dollars i believe but considering im almost 23 i have to use all my holiday pay and sick pay for days lying in the bed crying and it has ruined my relationship with my ex i am running out of options. i fell helpless and honestly dont know how much longer i can handle this any help would be much appreciated.. im desperate :( Thanks
Hey, my girlfriend was diagnosed with IC a few years ago and had all sorts off different treatments. We were never told of antibiotics. Is anyone able to tell me which type of antibiotic is being used for the treatment of IC? Is antibiotic therapy a controversially discussed subject between urologists and if yes, why? thanks for your help. cheers andy
WOW...I was convinced this painful urine life was some sort of punishment from God for sex before marriage! Pheww more relieved to know its a lot more common than I ever knew! I've been suffering with reoccurring, very painful cystitis for 8 years now. I got it at 15, and have pretty much, had a painful wee since! I've had all types of antibiotics, stop drinking alcohol because that makes the pain unbearable and have even altered every bit of my diet. I do notice it is worse when I am stressing out, which is a horrible cycle, because most of the time I'm stressing because of sleepless nights going to the toilet, feeling desperate and then nothing, maybe a drop!! Anyway I've had the medication, the camera tricks, the stretching, the prodding, everything. Then I came across, thanks to harley street, the medical term 'painful bladder syndrome', pretty obvious!...which neither my doctor or urologist could even tell me, and read everyone's helpful comments and now i'm certain the next stage would be surgery, which I know nothing about and most definitely do not want it to come to!! So whats happens next? I just want to go to the toilet like normal girls, rather than having a dry leek and having use the tissue to dry my eyes instead, crying in public toilets is not fun anymore!!! : ( x
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