Information is not correct!

Posted , 7 users are following.

I am extemely concerned by the information listed regarding interstital cystitis on patient.info. The information is factually misleading at best, and worst it is simply wrong in many places. Although the site does state that IC is not an infection, the information given is confused with urinary infections repeatedly.

Intersitital cysitis may occur in some people as a result of their bladder lining being damaged by infection- but this is not true in all people. The information regarding 'proper cleaning' to prevent infections is pointless and insulting to IC sufferers.

And worst of all this site suggests cranberry juice will help your symptoms, when most likely it is one of the most agrivating things you can drink with IC.

I understand that everyone with IC is different. If you have or think you have Interstitial Cysitits i would recommend checking the information on another website. I have IC myself, and am a memeber of several support groups. It makes me angry that such a debilitating condition is still so misunderstood here in the UK. I was lucky, my syptoms started very suddenly while i was studying in the USA for a year (where IC is much better understood)- and i was diagnosed very quickly.

[color=blue:077afa53bb]PUK Comment: The Interstitial Cystitis article is going through a review just now and we have posted your comments (and reply below) for the author to take into consideration.[/color:077afa53bb]

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  • Posted

    I thought the information on this site was bad as well. Especially the part about drinking cranberry juice- that causes horrendous pain for me- all acidic drink is bad and cranberry is the worst. :shock:

    I agree about the lack of information regarding IC here. This website should check out the information on ic-network.

    There is a complete lack of usefull information here- and i found a lot of their 'treatments' about education and cleaning very annoying as well!

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  • Posted

    Further to this thread, we are currently reviewing our patientplus article on interstitial cystitis and will draw this feedback to the attention of the author.

    Patient Admin Team

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  • Posted

    Thank you patient.info for reviewing and updating the information on this site. I have been suffereing with IC and was diagnosed last year. I get upset to the point of tears when i tell people what my condition is and they give me pointless and stupid advice like \"drink cranberry\" because they don't understand the condition. One nurse at a hospital where i was having my hydrodistention done went to the point of asking me how i wiped myself went to the toilet. I was very annoyed and proptly told her that IC was not an infection. Doctors kept prescribing anti biotics even though all my urine cultures came back negitive. They also kept suggesting strss becuase lack of sleep and pain from IC causes sufferers to appear aggitated and tense. Eventually, i went to A&E because i was in so much pain. My hydrodystention showed pin prick bleeding in my bladder. I was refered to a good urologist who diagnosed IC. Now i am being treated and am starting to get my life back. Diet modification really helps to lessen symptoms- i'd recommend anyone with IC to check out the diet pages on **** - it has really helped me along with oral medications and rescue instills.

    [color=indigo:8af191a29c][size=9:8af191a29c][b:8af191a29c][i:8af191a29c](Sorry but Patient Admin have removed either a telephone number, an email address, a postal address and or web address, from this posting, as it is the policy of Patient UK not to publish these on this forum.

    If you wish to communicate directly with people, you should register, for free, with the forum (click Register in the menu list below the green banner above). You and other registered members will then be able to communicate with each other via Private Messaging (PM) or e-mail.) [/i:8af191a29c][/b:8af191a29c][/size:8af191a29c][/color:8af191a29c]

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    • Posted

      l agree with Guest, but accept people probably do get ic in varying degrees of severity and inflammation, with a minority the worst type, which the disease was initially named after`hunners ulcer`.  I.C is a chronic inflammatory condiiton of the bladder, causing pinpoint hemmoraging, leading to scar tissue, which can cause the bladder to shrink, hold less urine.

      The nervous system passes through the bladder which can also add to symptoms, physical and phycalogical.  Its really not caused or aggrevated by bacteria, or at least bacteria from external sources, which usual bacterial cystitus can be, re intercourse etc, so excessive personal hygeine will not help with ic, although acid alkaline urine can affect, so avoiding acid foods can help, but  it wouldnt cure or reduce symptoms greatly for all, l seem to have a natural aversion to many acid fruits and foods,  nor will how you void help many, but allowing for severity of symptoms and inflammation in the bladder, and whether ulcerated.   Some with ic have tried numerous self help diets, herbal, acapuncture, endless list or regimes.

      with little or short trm help, and finally after many years suffering severe ic will agree to or plead for a urostomy, which for many seems successful. Took me years to get a referrral, as there is more ignorance about ic generally and with gps, but easily diagnosed with a cystascope by a urologist, even after that, many gps and others make light of what is a serious devastating condition, along with many with it having other related immune or allergic conditions.   For me the prescribed meds, amitrip, cimetidine, l added the researched reccomended l`arginine, and more recent years one anti b a day, also well researched and trialled and shown to help with symptoms, which placebo didnt. A very complex disease, even the experts dont truly understand it completly. 

       

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  • Posted

    Hello, I've been researching IC because I think that this is the condition I have, all the symptoms point to this but I am having a valve operation on 18th September, they are also doing a cystoscope which I think is the main thing that I need? I also do not have infection in my urine and was told by my Proffesser of Urology that my pain in my stomach and back was definitely NOT coming from my bladder!! I have been so debilitated by the pain since last December! The painkillers don't work and they give me rashes anyway! As wel as irritating my gut. I feel relieved in some respect that I can read about this condition from other sufferers as no one understands what I've been going through, even my GP kept sending me for scans and bone x-rays!! Thankyou people for this forum I feel I am not alone anymore.
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  • Posted

    I was diagnosed about two months ago and have been receiving Cystistat for the last month. during the course of treatment I had to have antibiotics for an infection. When I asked my urology should I be taken them for three days or seven days, all I was told what the studies say, not what I should be taken. I am really frustrated with my urology's and now have asked my GP to be refereed to another urology for a second opinion. My confidence in my current urology is gone. If any one has any idea now to deal with this condition much appropriate.
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  • Posted

    I have had IS for as long as I can remember - having even been hospitalised at times with severe

    abdominal pain.

    I noticed that the pain was especially bad at night after urinating. I am an 'always in a hurry person' and

    going to the loo was a quick, fast performance.

    I started thinking - I have an inflammed bladder - when I go to the loo, I push, and this irritates the bladdermuscles and causes the pain problem.

    From that moment I have had NO pain - for 8 months now! Because, when I urinate now - I just let it trickle out naturally. The 'frequency' thing is still annoying but with no other symptoms.

    The answer for me was as simple as that!

    I hope it works for you smile

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  • Posted

    Thankyou for replying, I am having a valve operation on the 18th September but I cannot see my urologist until the day of my op to discuss my condition with him!! It's been a complicated time as I am now on my third consultant!! The previous 2 consultants dismissed my pain and since reading up about IC I find it incredible that they did not offer any advice for me whatsoever, I felt so demoralised but now I know I am not going mad!!

    I have tried not putting any strain on my bladder by pushing but opening my bowels puts pressure on my bladder as well and the pain never really leaves me? I just hope that having the cystoscope will finally give me a diagnosis. smile I hope in the next couple of weeks I can report some progress!!

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  • Posted

    Tina

    Sorry to hear of your problems.

    I can't see that a valve op will help unless you have trouble with 'leaking',

    The doctors and specialists have no idea what IC suffers have to go through and I think a lot of them think it

    is in our minds! Unfortunately they have no answers. Whatever I ate or drank had no bearing on the pain threshhold.

    The cystoscopy will confirm inflammed bladder walls no doubt - as it did with me.

    My bowels also had no bearing on the bladder pain.

    Good luck - I would advise you to see the urologist before going ahead with the valve op.

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  • Posted

    Hi Mary, I have followed your advice and just allowed my bladder to flow without pushing or using any muscles and .... It has really worked!! I have not been pain free but it has definitely improved my pain so I want to thank you for that advice smile I am seeing my consultant before my op and am going to ask him not to operate on my bladder/ valve unless he thinks it is necessary as I don't believe that is the problem. I am so looking forward to next Wednesday ! I've been waiting since last December for this!! Wish me luck smile Tina.

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  • Posted

    Hi Tina

    I am so pleased to hear this has helped - give it another week or so and hopefully the pain will be gone completely smile

    Yes - best to leave the valve alone I think!

    Keep in touch

    All the best

    Mary

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  • Posted

    Hi all, I cannot tell you how relieved I am to have found this forum.

    I am so miserable right now I don't want to live but I have 2 children so must find a way of coping.

    The symptoms of my ic came on so suddenly I thought I had cystitis so I asked for a sample to be checked (twice) and both times it came back clear with no bacteria.

    So I literally googled cystitis without the bacteria and up popped IC

    I ended up in a&e with the pain and I told them I suspected IC so they prescribed me amitrpilyne which did help a little.

    I was then referred to a urologist who said it sounded like I had over active bladder but I just didn't buy this as my symptoms are textbook IC

    I had a cystocopy 2 weeks ago and low and behold I have blisters on my bladder wall which are indicative of IC

    I have my appt next week to discuss this and I am praying they give me some advice to help!

    My worry is that since I have had the cystocopy I have been worse, has anyone else experienced this?

    Also, does anyone know of any support groups to help sufferers cope with this?

    If not I would like to consider setting one up as no one understands like an IC sufferer does!

    Look forward to hearing from you! Xx

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    • Posted

      Well diet is the most important for me.  Avoid acidic things, especially coffee, tea, chocolate, citrus, tomato and vinegar.  I also take atarax which helps a little.
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  • Posted

    Hi Lara,

    I don't know if this may help with your query about support groups - http://bladderhealthuk.org/

    Regards,

    Alan

    Emis Moderator

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  • Posted

    The cob foundation are also knowledgebale on intersticial cystitus. We`re told knowledge of ic is more widespread, yet still fairly unknown by public, with many in health profession knowing little, unfortunately its a underestimated condition, re severity and affect on sufferers life,s, more so before diagnosis, which for some can be a long time. It took me many years of frequent bouts of pain and ill health to get diagnosis and treatment. My symptoms started following csection-sterilisation with slowly diagnosed bacterial cystitus, which l had suffered odd bouts of over several years, which cleared up well with anti bs. My symtoms were a wk of moderate pain, wk severe going onto intense, wk or 2 discomfort, re sore tum, low back pain, frequency aggrevating it, as did newly developed heavy menustration, intercourse, initially diagnosed post op, then hormonal, meds made no difference or worsened it, as d and c, developed bouts of aneamia dizziness, pills then injections for that, frequent thrush and pessaries, affected mentally with anxiety, went on years, a month of antib l wk, pessaries, resulted in mass discharge, pyleitus, my partnership under stress, 1 young kds who despite trying to not let it affect them, lt did to an extent. My gp useless had decided phycalogical l was neurotic hypacondriac, unbelievable when l,d clinical proven symptoms. Next affected inflammation of gall bladder, choicylitus, not stones, removed, finally paid private gynacologist who decided it was my uterus, l had hysterectomy, which only removed one of trigger symptom mentustration, but symptoms of course remained

    by which time l was suffering depression, anxiety, in a mess physically and mentally, put on amitriptylene which is reduced frequency which helped a little. Think by this time we,d finally sussed it was urological rather than gynalogical, a new gp referred me to urologist, still 3month xray, 3 month scan, 3month cystascope, nearly a year later for diagnosis of ic, prescribed amitrip again, cimetidine, and support group, all helped though took a few years for symptoms to settle enough to lead a more normal life without ill health and severe pain. l aslo believe due to years of non treatment l,d developed a deep seated infection, due to anti b affect and what the pharmacist told me, about long term meds for bacteria, candida, protozoa, worms, not gps or consultant, Near 13yrs of my life seriously affected, couldnt get it back, my mum died a few weeks after diagnosis, husband following year. also couldnt get back to have more normal healthier livelier times with them. There were many times l felt hate and total contempt for years of incompatence, negligence, in not at least referring me to a urologist sooner when fairly obvious symptoms. l was in my early 50s by the time it had settled well enough to have some normality. The support group, wee ray of hope later cob were a great support, 2 good friends from it over l0yrs, still are, one had urostomy to get normality Now in my mid 60s, and having probs again, simular but different, possibly kidney problems, which can happen due to hbp, but also do question if the years of neglect increased likelyhood. IC varies in symptoms and severity affects, but others have also had serious affects and long wait for diagnosis, hopefully it has improved a bit in understanding and diagnosis treatment. l would say to anyone who has simular persistent symptoms of frequency pain ill health with it, dont be fobbed off, only a cystascope and biopsy will bring definite diagnosis and treatment.

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