Advice on bladder pain

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 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 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.  

Hi Shirley thanks for sharing with me. Im sorry you felt that way but it sounds like you are much better now. symptoms started of in 2015. I had the cyscopty in 2016. My pain issue is urethra pain...like a burn and also feel swollen. Robert has a private clinic on Thursday and Monday (your right). I've left a message with his PA. Did Robert help with your diagnosis.? What medication are you taking now? What helps you with flares. I've had a flare for over a week now. Been to the GP there no infection.

Hi Sandy, you’re right I am a lot better these days, generally speaking, but I do get flares and I’ve been uncomfortable for the last few months but not sure quite why as symptoms are slightly different so I’m currently being investigated - yet again! I’m having a course of PTNS which is helping.  When I get a flare I try to drink more water, be stricter on my IC diet, take pre-relief and quercetin (a natural anti inflammatory that I find very good) and try to be as calm and stress free as possible! Prescribed medication for me is Mirabegron (betmiga) 50mg at night.  I’ve tried other stuff in the past, including amitriptyline, but this is the only pill I’ve found helpful.  The thing that really helped me with the urethral burning was HRT.   I think my urethral problem’s were hormonal in origin due to a VERY early menopause!  You could ask whether you could try some estrogen pessaries called Vagifem.  I suggested them to another lady on her (think it was Pam) and she said they’ve really helped with her burning pain.  You’re young so probably don’t need systemic estrogen but a little extra in that area might be helpful.  You may need to suggest it though as it’s not the first idea that springs into a doctor’s mind when dealing with the bladder!  Robert also did a urethral dilation which, whilst initially caused more pain (for about a week) did really help.  I had lots of other gynae issues which he sorted out for me too.  I’m now under a urologist and a separate gynaecologist, as I moved away from Kent and it was after that I was diagnosed.  Robert works closely with a urologist so he may suggest you see him instead - I don’t know but please let me know how you get on! 

Hi Shirley thanks. Where do you get the quercrten tablets from. I looked on Amazon but there's loads. I ordered a tens device last week so will give that a try also. I also heard marshmallow root is good for burning so I ordered that to. I asked my GP to refer me to a gyc last week. Hopefully I get a appointment soon. At what age did you symptoms start?

Hi Sandy, the quercetin I use is made by a company called Solgar.  It’s called ‘quercetin complex with Ester-C Plus.’ It’s vegetable capsules.  I get the jar of 100 capsules from Amazon.  Make sure it’s the ester C one as that’s the only bladder friendly one.   I’ve also bought a tens machine but it’s early days for me to know if it’s helping as I’ve been told it takes a few weeks of daily use to know.  I’ve heard about the marshmallow root but I found out I couldn’t use it but I can’t remember why!   I was in my 40s when the symptoms started but I think I’ve always had bladder probs - I was always the child who had to ‘go’ during lessons and I’ve always had to sit on the end of the row in cinemas etc ‘just in case’ and I’m a nightmare on a plane lol! I’ve always had cystitis on and off which has only once been a UTI and then I had a kidney infection with it.  No significant infection has ever been found even when I’ve had severe symptoms.

Hi Sandy, 

Just reading your thread and i dont know if me and you have similar cases, however i have had bladder pain for 9 years now, every doctor i ever saw said there was nothing wrong with me despite being in pain every day.

I am now seeing a private doctor in london (harley street) Professor Malone-Lee, i believe he does do NHS too. He is the only doctor who has diagnosed me and seems to understand the pain i go through and how it affects my day to day life. He is a doctor that treats with antibiotics, i have been on a combination of antibiotics for a year now and feel about 70% better, i still get my off days as i am not 100% healed yet but in comparison to how i used to be it is a massive change.

I would love to hear what your pain and story has been like and maybe this could help?

Hi Shirley,

Would you mind sharing the name of the urologist based in Kent please? I just gave birth and also had heamaturia during my pregnancy. And they kept thinking I have UTI but tests always came back negative. I have Endometriosis and hear IC is Endometriosis evil twin and 80% of suffers have IC. I’m willing to go private as I can’t even sit in the car because it hurts. Thank you x

Hi Alenka, I’m sorry you’re suffering so much.  I have IC but not endometriosis although I know women who do, and I know how painful it is.  The uro-gynaecologist I saw in Kent for a few years, and who helped me, is Consultant Mr Robert MacDermott, at Darenth Valley Hospital in Dartford.  He also has a private practice nearby and has a website which might be helpful.  I think it’s ‘Kent gynaecologist’ but if you google him you’ll find it.  I wish you well and hope you find some relief soon.

Hi Shirley I called his clinic and was advised that because I live outside of Kent I wouldn't be able to get treatment on the NHS. So I've looked up another consultant in wemberly. He's a urologist and gyc and works at parkside hospital.

Hi Melissa. I woke up one morning in 2015 and experienced this burning pain like cysisitis. Went to GP who said no infection. So drank loads of water. Then in 2016 I had a number of infections. Was sent to Guys hospital. They did a cyscopty and told me my bladder and urethra looked normal no concerns. Told me to watch what I eat. So I started to take D Mannose and pro biotics. I've been able to manage my symptoms via diet normally. But recently had a long flare. My pain issue is burning pain when holding passing and when urine has voided. I haven't taken any of the drugs the doctors have been giving me because they all say didn't things. But I've just booked an appointment for £200 at parkside hospital in wemberly to see a urologist who is also a gyc. I'm in a lot of pain during sex to. So I'm wondering if there's some underlying issues.

Hi Sandy, that’s a shame - I thought the new rules said we could choose to be treatment at any hospital in the uk.  Obviously not! But I’m sure the one in Wembley will be just as good.  There are very few Uro-gynaecologists about so I’m glad you’ve found one as gynae & bladder probs seem to be closely linked and hopefully he  can cover all bases! Let me know how you get on! 

Thanks Shirley I'm seeing him tomorrow. Shirley do you know if IC is a progressive condition does it get worse with age? My period seems to make the symptoms worse.

Dear Sandy,  I’ve heard others say that it’s worse during a period.  I know for sure that it’s worse when my IBS flares up or I get constipated. My urologist explained that the nerves to the bladder, bowel and uterus are all bundled together at the base of the spine and if one lot is irritated (as is possible during a period) then they tend to aggravate the other nerve endings too, so if that’s the case, it makes sense.  In fact he’s told me never to get constipated which, with IBS, is easier said than done! I’m not sure that it’s a progressive condition as such - mine is a lot better overall than it was 10 years ago.  There’s no cure as such but there are ways to manage it once you got it under control initially which is what you’re trying to do now.  I think increasing age is an issue if estrogen levels get too low as the bladder needs estrogen to be healthy.  But that can be sorted out too.  It’s hugely frustrating and depressing and panicky in the beginning but it will get better once you have a supportive and knowledgeable doctor/consultant on board.  Hope it goes well tomorrow x

Hi Shirley

I had a consultation and the Dr felt I have a chronic inflammation of the bladder. He didn't examine me but felt this is what my symptoms showed. I'm waiting for my appointment at Guys and I am going to ask them to take a biopsy because they originally said my bladder was fine in 2016 and no concerns.

Thanks for letting me know - I was wondering how you’d got on. It’s ok to say chronic inflammation of the bladder but you need to know why!  Hopefully they’ll sort this out when you go to Guy’s.  Sometimes biopsies don’t reveal anything but that wouldn’t rule out IC - it’s a diagnosis of exclusion really - only the presence of hunners ulcers would confirm IC but most IC sufferers thankfully don’t have them.  On cystoscopy my bladder looked ‘normal apart from inflammation and evidence of recent infection’ er, ok, so NOT normal then lol! My urologist said IC after ruling other causes out, but he also said the treatment is the same whether the bladder’s inflamed due to IC or not.  Think about the food and drink you’re having and if you wouldn’t rub it into an open wound then don’t put it in your bladder! Good advice! My bladder is definitely not happy with this heatwave we’re having.  I have to keep reminding myself to drink more water! Let me know how you get on at Guys. 🙂

He basically said my history of UTI as a young person and history of cysisitis could mean I have the chronic immflantion. He said he can't be sure without checking. I feel as my period has made this flare worse. Before then I was managing with D Mannose. I also noticed that I well worse when I'm less busy and my mind is not occupied. I also think the heat hasn't helped me. He said that loads of women suffer from this issue in the UK. He mentioned that one women is being injected with BOTOX and others on anti biotics and histamine blockers. So do hopefully guys will do some further checks in the next 4 week.s

Hi Sandy.  I take antihistamines for mine.  It’s worth you trying some.  I’m on hydroxyzine as cetirizine made me irritable! When the bladder is inflamed it produces histamine which makes it worse so it makes sense that an antihistamine might help.  Be wary of the Botox injections.  I refused them.  I’ve heard of some women having that and not being able to wee afterwards without using a catheter and I think that would be very uncomfortable to do - personally I’d keep that as a very last resort!  There are other things to try first.  Look up

antihistamines for bladder pain for suggested brands and dosage and see what you think about trying it.  We shouldn’t even be aware we have a bladder until we need a wee - it’s horrible and depressing when it goes wrong! 

Thanks Shirley. I'll speak to them in August that's when my appointment is. I've been watching my diet very carefully. Most breads . Eggs and fish and salad seem to be fine for me. I haven't drank coffee for 2 years now not tea or green tea. My sad choice of drinks are peppermint. Water and chamomile. I think reading some horror stories has made me feel worse and I keep thinking that my bladder will need to be removed. This has all come from me doing a lot of research which I can't seem to stop doing. I'm only 33 and I'm thinking if I can even have children with such a condition. I've heard it can be manages with diet and less stress..and medication. Do you think I should ask for anything else a part from a biopsy

Hi Sandy, I know you feel - research is good but when you’re in pain and reading horror stories it can hinder rather then help.  It’s only in extreme and very rare cases that bladder removal is recommended - not an op I’d ever want done! The trouble with the internet is that you will always find ‘the worst case scenario’ and scare yourself, so I try not to do this unless I’m looking up something already diagnosed. On the other hand it can be a great tool to find out more so it’s a balance really isn’t it?  There is a calming medication called Betmiga (mirabegron) which they might suggest you try.  That’s very helpful.  As for tea - I drink redbush tea with milk in it and at first it was a bit odd (better with milk in) and now I prefer it to ‘real’ tea - it tastes quite similar unlike the herbal teas and is completely caffeine free.  Great for dunking biscuits in!! If you stick with it I reckon you’ll get to like it a lot.  Make sure it’s pure redbush though and doesn’t contain any other flavours,  I don’t think there’s anything else you can ask for at the moment - just make sure they're aware of how horrible it is.   I’m hopeful that it will settle down soon (inflammation in the bladder doesn’t go away quickly) and I’m sure you’ll be able to have children at some point (many with IC do) in fact the hormonal changes in pregnancy might be a good thing! Not that I’m an expert on that.  I had my son before I had bladder problems.  I’m hoping you’ll get some proper help at Guys and will go on to live a normal pain free life! 

Hi Shirley and all. I went to the urologist and they this I may have urethral syndrome. I also had to go to the GP because I felt I had a UTI. My GP told me there was blood in my urine so I was given nitrofurantoin 100mg twice a day. Since taking these (yesterday was my last dose) the burn and pain has disappeared. I wonder if this has happened to anyone else.

Hi Sandy - I’m glad your pain has gone.  Sometimes you can get infection in the urethra but because the urine flows quickly through it, it doesn’t pick up enough bacteria to show up in a test.  See how you go from now on, but it’s looking good! My symptoms of urethral syndrome were 90% improved by HRT so I think post menopausal atrophy was the cause (I had early menopause at age 32) The term urethral syndrome is used less often these days as they now believe it’s all part of IC.  But there are other causes or urethral pain- even a reaction to shower gels/panty liners  etc.  I hope you’ve finally got an answer - isn’t it lovely to feel ‘normal’ again! 

Hi Shirley not sure for how long as I've been in this position before. Did you take long term antibiotics? I was offered to take cimetide but my GP said I shouldn't take it because my prolactin levels are too high. 820. I'm just wondering why anti biotics make me feel better and not other medication. I've heard some people say that IC is a long term bacterial infection built up over a number of years. I've got another appointment with the urologist in September they just keep giving me advice but no medication. Last year they asked me to try amitriptyline...i haven't taken it yet.

Hi Sandy, at one time I was on low dose antibiotics to prevent infection. First I was on trimethoprim but developed an allergy to it, then nitrofurantoin - there are very few antibiotics they use as a preventative.  Eventually they decided that as my samples only ever had signs of inflammation rather than infection, it was pointless taking them.  In fact with IC, antibiotics can make symptoms worse.  However, having IC doesn’t mean you won’t get infections from time to time so maybe this is what’s happened with you.   It is true that infection doesn’t always show up in tests which aren’t totally reliable anyway but even then, Urine infections can sometimes be cured just by simply drinking more and flushing the bacteria out.  A low grade infection can sit in what they call the ‘slime’ and out of the reach of antibiotics but you’d need a cystoscopy and biopsy to find out.  See how you go - hope the relief lasts! 

Hi Shirley and All,

i had a cyscotopy and a procedure where they stretch your bladder. the doctor told me there is no bleeding and there was no need to take a biopsy. has anyone had this procedure before and how long does the pain last?

my symptoms are mainly a burn around my urine tube. this makes have sexual intercourse difficult. my Dr has been sending my urine off to the lab and it always comes back negative. ive been taking D mannose for 3 years now and it seems like the only thing that helps at the moment. i also drinks tons of water and a alkaline diet. my Dr thinks i might have endometriosis...but i dont have the common symptoms of this. although when they tried to carry out test it was very painful...mainly in the vagina area. does anyone else exoerience this pain

Hi again Sandy. I know of the procedure you had. the pain should subside within a week or two, and you should have been given painkillers. Is the pain in your urethra constant or just when you wee? does it hurt while youre having a wee or just after?

Pain in the vagina can be due to vulvodynia which I'm afraid often goes hand in hand with IC. It's quite possible that you have endometriosis and that could easily be causing some of your symptoms so that needs to be investigated further.

I'm sorry you're still suffering.

hi Shirley the pain isnt as constant as before i think the procedure helped. i wasnt given any pain killers but was going to take some. ive been referred to a gyni clinic so just waiting for a follow up appointment. the urologists doesnt think i have IC as all my tests have come becak negative so wondering what else it could be.