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Conditions

Interstitial Cystitis

Interstitial Cystitis

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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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Hi all I really feel for anyone suffering with ic I've had pelvic pain and lots of urine infections kidney infections etc for 8 year it took them 6 year to diagnose me as it's definitely not something doctors know much about I've had installations various stretches lots of medication and the flare ups are horrendous . I was fitted with a sacral nerve stimulator 2 year ago and the relief lasted 3 months but I know some women who have had great response from this x unfortunately I'll be having surgery this year to divert my urine and have a neo bladder made as this condition has totally affected my life in all areas x so wish it was more understood and not all pelvic pain is gynaecological x





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Ive suffered for 20 years and it took 4 years for my gp to take me seriously Ive tried everything avail including herbalists and accupuncture."ive had elmiron,cystostat, and every pain relief going. Ive had 15 bladder stretches, which has weakened my muscles, so i leak My pain has got worse and worse and the only thing that works is oramorph. But my gp has taken it off me!! due to worry of me getting an addiction to it. Im on zomorph but, its slow release and doesnt help with the very bad flare ups which are a daily occurance. My life is mysery. I dont want to carry on living in this pain. I have to fight to get any form of pain relief.





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I was diagnosed with IC about 8 years ago. At first it was just frequency & IC was diagnosed after a cystoscopy(& several different Dr's & hospitals. I've had many different treatments including medications & acupuncture. 5 years ago I had a sacroneuromodulator fitted in my back and while this helps with the frequency, especially the nocturia it didn't stop the pain coming. Now I am in pain every day, I can manage most days but I sometimes get really bad flare ups which have resulted in lots of time off work. I now also have bladder instillations of Ialuril every 4 weeks which I now administer myself at home. I find the worst things for me are cranberry, citrus & wine.





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I don't have IC, but my bladder wall has thickened and now will only hold 100 ml. Am at my wits end as I am basically incontinent. Could I have a hydrodistention and would it help?





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Hi I have ict...just been diagnosed ..never ever suffered with my bladder ..and all of a sudden it happened..and I'm chronic I'm told... I have no pian just discomfort .wee a lot...mainly mornings ...aloe Vera juice helps a lot ..aloe is for acid and many other things ...I have cut out caffeine ..it's a no no...sweeteners I think been a killer ..especially aspartame ...I also changed sugars to coconut blossom sugar from cane ...in SA we have a natural tea called rooi bos tea it's amazing ...they also make them in cappochino called red cappochino ..I was lost without my coffee....a health shop put me in boswellia tablets to a natural antibiotic ..I'm giving it a try....the net sa is cranberry was a no no ..and I see many do use it ..I am going to try the tablets ..it's not painful for me and I feel for all that have pain ..here's to helping each other regards Leonie ..oh I want to find out where to get manno tabs to





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I am so pleased that some of you have mentioned Elmiron - because I thought this was a U.S. drug that has yet to be approved in the UK. I've suffered with IC symptoms for at least 3 years, although I think symptoms presented even before this period. I was referred to the hospital 1 year ago and I'm yet to see a Doctor. I'm going to ask the Urological Consultant if he thinks it is IC as all of the symptoms are spot on. I am anxious about his reaction, and worried that he will dismiss it and offer no alternative. So far I've received a lot of comments such as 'you are young so it won't be that' (I'm 22) and I feel mistreated, with Doctors telling me its overactive bladder, to recurrent infections (no infections present), prescribing long-term antibiotics that I have now refused and more. I have had a diagnostic cystoscopy to rule out bladder cancer because they were worried about microscopic blood in my urine. The result was 'normal' although I am very worried about a large red patch found (flexible cystoscopy no distention) that to me signifies inflammation but was dismissed! She vocalised that it was present, but as far as I'm aware hasn't even mentioned it in the report or made the connection between my pain and the inflammation. I'm aware that damage can be seen with IC patients during a cystoscopy with hydrodistention, but for the damage to be visible before a stretch is surely not good? I'm desperate to get back into work after just completing my degree. Any responses would be much appreciated as I would love the chance to talk to people that understand what I'm going through!





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Hi Laura, I am 21 and have just been diagnosed with IC, I too believe I have suffered with this condition for around 3 years however have only been diagnosed now after a chronic bout lasting 2 months with no relief, leaving me struggling to go to work every day and live a normal life. Every sample I do comes back blood positive and I see a lot of similarity between your situation and mine. I have been to doctors who have simply dismissed me as having a possible infection and prescribed antibiotics again and again and again, to no avail. I would advise you to not lose hope, and to try to see a urologist as soon as you can, all it takes is one specialist to recognise your symptoms and then the ball can immediately start rolling for treatment and you can start to feel better. In the meantime before treatment you could research the type of foods that irritate the condition (tomatoes, caffeine, fruit juice etc) to try alleviate some symptoms. I hope you can get it sorted soon, I know how frustrating it can be!

Don't think that you're too young. I started with symptoms from a very early age. Pain started at 14 and I was diagnosed when I'd just turned 16. I'm 23 now and have excruciating pain. I had such a bad flare I had to stop my university studies for year under doctors guidance to help things settle down when I was 20. I now have many other conditions as well which are related to ic. Please, if you feel pain go to the doctor. Keep telling them. If one doesn't listen go to a different dr. One consultant (not a urologist) said that pain isn't a normal thing in the body. In fact it's our bodies way of telling us something isn't right. You are the only one that knows you're body. Be confident in yourself. Once you have a diagnosis it can almost make you feel better as all that frustration and confusion is taken away. Then you can get the right treatment. Good luck and I hope you get answers.

I took Elmiron. It did not work and made me receed and my hair fall out and thin. Was a horrible side effect of Elmiron especially as it never worked. ........

Hi all. I am a fellow sufferer and just wanted to let you know of a group on Facebook that I am a member of. It's a great group to be a member of as we all share our experiences and share each others pain! Hope you're all not feeling so bad today. Rachael Search for: Interstitial cystitis UK private support





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Does anyone know of a suppost group in australia am from nsw as when i tell anyone i have i.s. they only pick up on sistities and do not understand the pain and going to the toilet every hlf hr and yes have felt like life is not worth living as quality of life is no more aslo feeling exausted from endless trips to bathrooms

Try dessert harvest aloe vera it worked wonders for me you can get this from the USA I was pain free in weeks have a better quality of life





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I have just written a blog post on Interstitial Cystitis and my experience with the condition. You can read it here: http://www.purehonestliving.com/interstitial-cystitis-lemon/





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Hi everyone. I am certain I have IC but my GP has ruled it out. I have had my symptoms for nearly 2 years now and after consultations with a gynaecologist and urologist, I have not been diagnosed. My GP says I 'probably' have some sort of bladder irritation caused by my anxiety and depression (I also have IBS exacerbated by stress)and to keep taking the drugs which (did) help (Solifenacin/Darifenacin etc) The problem is that now these drugs are not working and even though I am taking paracetamol, ibuprofen and 60mg of codeine, the pain is unbearable to where it is affecting my work. Should I push for a diagnosis of IC or would it be pointless as the treatment would be the same as I am having now? I have had a cystoscopy and it was NAD apparantly. Please help. Thanks





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I have the same conditions have had it for a while and after many different treatments I found a treatment that worked wonders for me it was called dessert harvest along vera you can get this from the us give it a try you will be pain free in a few weeks trust me

Don't rule out bacterial cystitis - it was thought that I had IC but 7 urologists later diagnosed bacterial cystitis which is now being treated with long term antibiotics. I am much better and so thankful that I have found this kind and helpful consultant. Good luck - it is the most miserable complaint.

Do not give up.. I had an ongoing battle for 4years with my doctors every 2 weeks I was going back and all they said was I had a UTI. They finally referred me to a urology specialist and he gave me a cystocope with bladder distension. And urethral dilation he also gave me a bladder instilation. After 6 biospies being taken and the pictures of my bladder he decided I had IC I had it mild with mild hemorrhaging. My bladder can only hold 400mls due to the doctors not referring me sooner But now it has got worse. And I do need the op again. All I can say is if you have the cystocope be aware that when you go to pass urine the first time it's so painful. But in the end it's worth it. The biggest symptom of IC is do the doctors say you have an infection but once sent to the lab there is no bacteria there and is it worse at night and after you eat acidic foods if these are yes then it's possible you could have IC but I hope you don't. There is no cure and it will never get better it will just become more manageable. But don't give up keep pestering until they do the scope


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