Hi all, I came across this article as I've been experiencing pain when passing urine for 2.5 year. I started taking d mannose a year ago and it does help. However I still get pain daily. Certain foods make it worse, anything acidic, alcohol and chocolate. It's so difficult to live with this condition because you have to monitor everything. Even the clothes you wear! I went to see the urologist and they adviced my bladder is fine and there's nothing to treat. I keep getting minor urine infections buy I refuse to take anti biotics. Has anyone else experienced the same??????
Hi Sandy, it sounds like u have interstitial cystitis but I'm not a doctor. When I was diagnosed it all began with pain, no uti. I went to a urologist and had tests done. When he did the scope my bladder looked good but my urine showed afp ( i think thats what its called). Anyway he said that people that have afp in urine have either , uti, ic, or bladder cancer. Some people with ic might have different symptoms than others. Mine is pain, frequently going to bathroom at night. But I dont have Hunser uclers on my bladder. I would consider finding another urologist who is familiar with ic. If theres anything else i can help u with feel free to ask, and if I dont know I'm sure someone else on forum does.
Hi Sandy, I’m sorry you’re experiencing that kind of pain. How did the urologist come to that conclusion? Did you have a cystoscopy or any other tests? I agree with you about the anti biotics - sometimes they’re needed but best avoided if possible. Lots of drinking water or lemon barley (my practice nurse uses this) should get rid of the bugs. There is an otc drug called Azo which relieves the pain. It sounds like the pain you get is in the urethra. They used to call it ‘urethral syndrome’ so you could look that up and get some ideas for self treatment. It is a very frustrating condition - I’ve had pain like that in the past but only for short periods of time. I’m surprised your urologist wasn’t more helpful. Maybe see another one? I wish you well.
Hi Shirley
Thanks for replying I only saw the notification in my inbox. The urologist completed a cyscopty in 2016, they dilated the urethra and gave me hiprex for one month. At fist it felt better but it went back to being painful. I've since just had the same pain since 2016. I keep going to the GP to give urine samples which normally come back negative. There s been a couple of times it's come up as a minor infection. I've been referred by the NHS to Guys department-they are the ones who have said my bladder is fine. They wanted to take a biopsy but they said there was no need because it looked normal. I was thinking of going private but it will probably cost me a lot of money. Has anyone in this group gone private or can recommend a good urologist to visit. I've been eatting an alkaline diet for months now but only see small improvement. It's really frustrating.
Hi Brenda thanks. I've got another appointment at Guys hospital in two weeks and hoping they can do another cyscopty. When they did do one in 2016 it came back clear and my urine normally comes back negative. I've eatting a allow me diets for months now but I've not seem much improvement. Can you recommend a urologist? How much does it cost
Hi Sandy, my urologist is in the USA. dont know where your located.
Hi Brenda I'm in the UK.
Sorry cant help you are an urologist in the Uk. But i know how you feel. My tests always come back negative. I just watch what i eat and drink. I never lift heavy objects. And i use a tens device. For me it workes wonders .😎
Hi Sandy, I’m afraid your story is very common. Similar to mine actually! My symptoms are always way to severe to be a ‘mild’ UTI which is the most the tests ever reveal. Whereabouts in the UK are you? From memory, a private urology consultant would charge between £150 - £300 for an initial consultation. I know of a good one in Kent and another where I live, on the Isle of Wight. Sometimes it’s worth paying to see them as you have more time to discuss it and get your feelings across. They can then treat you on the NHS. I didn’t have biopsies because the surgeon who did my cystoscopy didn’t read my notes properly! However, my consultant said it doesn’t make a lot of difference as the treatment for a painful bladder whatever the cause is the same as for treating IC. If you found the urethral dilitation successful, you may need another. My doctor told me that you rarely need just one but not to have too many or you’ll be forever having to have them! Great eh! With this condition , you do have to keep stressing how painful it is and how everyday life limiting. If you do go private, try to find a uro-gynaecologist (who does both as they’re closely linked) if you can, although I don’t think there are many about.
Hi Shirley thanks. I'm in South east London. I saw there is a hospital in Kent called beneden (I think). I've asked for a call back. So if I see a private urologist and they suggest that I need a biposie can I ask the NHS to do it? How does that work? What currently works for You? The pain seems to always be there and I've completely resulted to eatting salads and drinking water. It's quite depressing to be honest. I thought I might be able to get private health care but they said no because I have already been referred to Guys.
Hi Sandy. I’ve often had a private consultation but then you say you haven’t got private medical insurance so you would like any treatment to be done under the NHS. You need a GP referral for a private consultation in most instances though. I think so that the right hand knows what the left hands doing! The consultant I saw for quite a few years does private and NHS (private at Fawkham Manor Hospital in Longfield Kent and NHS at Darenth Valley Hospital in Dartford - he is a uro-gynaecologist and his name is Robert MacDermott - he has a website you could look at. He helped me a lot in the early days. It’s hard to recommend people though because we all have different experiences with doctors. The urologist I have now is very good too - very understanding and knowledgeable but of course, it is a very difficult condition to treat. You will find it gets easier and there’s a lot can be done to ease things. You say you’re sticking to salads? You really don’t need to - hope you’re not eating tomatoes? You can have lots of different food - the IC network app is brilliant at listing foods to avoid and foods you can still enjoy. Lots of water to drink is a must - even though it often goes against our instincts! I’m wondering if, although you’re trying very hard, you’re still having some foods that aren’t ideal? Especially some fruits and carbonated drinks - even water. You have to play detective in this game - what do you eat in a typical day? Maybe I can help as an ‘old hand’ lol
Hi Shirley, I wanted to get private healthcare but they have said it can't be covered because it's pre existing. So I was thinking of self paying. I've been told that a consultation normally costs around 260 if I was to have a follow up surgery costs around £1K which is too expensive for me. In a normal day I get Brown oats, eggs, plain chicken, green salads, hummouns, plain water and peppermint tea. Also have salmon or plain fish. I stay away from food like tomatoes, acidic fruits, tea, coffee, sugary snacks like cake and biscuits. I also wear loose clothing and cotton underwear. I don't think there's anything left to do lol...
Hi Sandy, I’m so sorry you’re suffering so much and it does seem the your doing all the right things. The diet is miserable enough without the pain! I’d probably go for the private consultation as it might well speed things up, even if the treatment is done on the NHS. Tell the consultant just why you needed to do it this way! Lots of people just pay for the consultation - I’ve done it lots of times. We shouldn’t have to, but sometimes it’s the only way to get things moving more quickly. Hope you can find a good consultant who does both private and nhs. Probably most do.
Hi Shirley thanks. I'm a little confused. To clarify if I find a consultant I should enquire if they also work for the NHS? If they do I can ask that they complete my treatment on the NHS? How does that work. Will the consultant refer to a local hospital? Thanks for helping me .
Hi Sandy, well I’ve always seen the consultant who works at my local hospital anyway - just that i see him at his private practice too. Best thing you can do is phone the secretary of the private consultant you want to see and explain the situation to them. They’ll be able to give you a definite answer to that question as I’m not 100% sure when it’s out of your area. But yes you can definitely have the consultation done privately and the subsequent treatment done by the same surgeon on the NHS - they will all have private secretaries who can advise - they’re usually very helpful.
Hi Shirley I contacted Robert via email but haven't heard back. My symptoms have become worse out of the blue. The pain in particular. I haven't eaten anything different but I am due to be on my monthly cy le next week. I went to the doctor and she gave me buscopan like tablets and diclofenac 100mg. Have you or anyone else taken these before.
Hi Sandy, I think you will hear back from him soon. Sometimes it takes 2-3 days. I’ve had both of those tablets - buscopan is an anti-spasmodic used mainly for irritable bowel syndrome and diclofenac is an anti inflammatory. Neither, in MY opinion, will help your bladder pain. Buscopan might, but all that the diclofenac is likely to do is give you stomach upsets! I hope you hear back from Robert Macdermott soon.
Thanks Shirley how long have you had this condition for? Was you diagnosed or did they say they couldn't find any issue? Roberts PA wasn't in so will call again on Monday. Also found a place called uro care in London. Might give them a try.
Hi Sandy, his private clinic days used to be Mondays and Thursdays, so you may have more joy on Monday if his days are still the same. When I look back I realise I’ve had ‘urinary symptoms’ all my life, but it didn’t come to a head, so to speak, until about 2007 and I wasn’t diagnosed with IC until 2013 although they must have suspected that as the IC diet was recommended to me before then. Really it was a history of pelvic pain and fullness (the feeling of needing a wee all the time, even if I’d just been) painful bladder spasms, gynae symptoms (vulvodynia and early menopause) urethral discomfort (feeling like it was swollen and very sensitive) I had two urethral dilitations, (that did help with the urethra symptoms) and total of 3 cystoscopies. No ulcers were found but evidence of inflammation was present. Long history of UTI symptoms (feels like infection but urine tests are negative or mild infection only which wouldn’t be enough to cause the pain) I think IC is a diagnosis of exclusion, based on the symptoms. Hunners ulcers are not present in all cases (thankfully!) it’s really chronic cystitis in the absence of infected urine. I have urgency but often not the frequency - I feel like I need to go all the time but I can hold it for a few hours except at night where I can get up anywhere between 2 and 12 times and I really don’t know why some nights are worse than others! HRT played a big role in relieving all my symptoms as I’d had an early menopause and had hardly any estrogen in my system and the bladder needs estrogen to be happy! The last few years have definitely been better than the first few! I was almost suicidal in those days. It really needs a multi action system but diet plays a big part. I’ve not heard of the uro Centre. Let me know how you get on with it all.
I’ve replied - it’s just waiting to be moderated!