Cystitis in agony hand hold ** interstitial??**

[Widget123]

Hi, I’m just in here for a vent, hand hold and reassurance that I’m not the only one whose going or gone through this.

2 months ago I was walking my dd to school when I felt a cold feeling in my bladder, by the time I got to the school I had to ask to use their loo. That was the beginning and it’s just got worse since... it started becoming more pain and tender ‘down fhere’, I started needed the loo more and more and it burnt when I went to the loo. I went to the docs and my wee tested normal but they put me on a week of trimethoprim, it did nothing, then they tried amoxicillin, this did nothing, cultures still clear. 2 days ago suddenly the pain went from becoming bearable to totally flooring me, I went to docs today and she’s found blood in my urine. She’s now put me on the antibiotic nitrofurontoin, booked me in for and ultrasound and sent off another culture. I’ve tried everything imaginable... I’ve drunk cystitis sachets and water like it’s goinf out of fashion, I’ve elimnated things from diet, totally cut out any drink other than water, I’ve even cut out tomatoes as I’ve her they are bad. Yesterday I had nothing but water some chicken and pasta and tonight I’m still doubled over in pain. It feels like a full blown infection but nothing’s coming up, the doctor thinks it may have become badly inflamed and has also given me Naproxen to ease the pain and inflammation. It’s christmas in 4 days and I’m so tearful, I’m supposed to be hosting for 10 people but right now I just want to curl up in a ball and cry I’m so sick of this it just won’t end... does anyone else have this? Please let me know I’m not alone. The pain is just unbearable

Hi OP, been keeping an eye on this thread for the last couple of weeks. Any update? You've been in my thoughts

Saw my consultant today, going to try the Urommune UTI vaccine in the hope I can come off Hiprex.

Hi, Anna I haven’t heard of that, I’ll google it now but that sounds really promising. Can you let us know how you get on??

I’m still waiting for my CT results and a date for my cystoscopy. My symptoms are erratic, one night I can’t sleep for the pain and burning and the next it’s almost gone... I’m keeping a food tracker now as I’m 100% my food is causing pain. So far I’m definate fresh orange, tomatoes, alcohol and caffeine are triggers for me but I’m going to keep going and do trial and elimination. The pain isn’t horrendous tonight although I’m now awake with bronchitis, can’t seem to catch a break right now! I have actually had to laugh about the fact that everyone I cough I widdle myself... shows how rediculously weak things have got down there, need to start doing those kegals!! Trying to be positive about scans etc, will report back, hoping for results in next couple of days xx

it was a cystoscopy with inflation under GA that showed my cystic, bleeding bladder wall. Consultant had nothing to offer but more installations which had done notHing to help for 10 months. He said I had no infection and no biopsy had been taken. It was at that point in desperation i went to Prof M-L who found a massive amount of leukocytes and said the inflammation and badly cystic bladder wall were symptoms of a chronic infection. I go back for second visit next month and will have to restrain myself from hugging him. Finally my life isn’t ruled by my bladder. My urine isn’t strong smelling and I’m not sore and feeling like I need to loo constantly. A simple old fashioned antibiotic and an antiseptic drug (hiprex) in th right dose and for long enough to finally start clearing the infection has changed my life in 3 months. I really find it hard to pay privately as I’m on a low income but It’s the best money I’ve spent in years.

I was constantly trying to work out triggers for flares such as food, drink and had tried every supplement going. Now I eat everything and realise it wasn’t anything I was eating but just a sore, inflamed, irritated infected bladder causing the symptoms because they have now gone.

Just a thought, you might like to try the Wim Hof method. It has been reported to reduce pain and inflammation, deal with infection better and make the body more alkaline generally. I have started doing it and can report my back pain has reduced. Look him up on YouTube. There are breathing tutorials, interviews with him, scientific explanations/theories and testimonials.

I hope you get some answers soon. I know there are quite a few foods that can trigger IC if that's what it is,sounds like it. Spicy food,acidic foods,onions,garlic,tomatoes. I stay away from orange and Apple juice,things like that. Obviously we are all different and different people react to things differently than maybe someone else. Alcohol is another trigger,although some people find maybe wine might trigger a flare but say gin and tonic doesn't. Keep a diary to see if you can see any patterns. X

Wow icy I just watched a video on him, what a guy! I’ll give that a go.

So ok mouse essentially you’re saying I don’t have IC I have an infection and Mummy you’re saying I sound like I have IC. It’s so difficult to know what’s going on... I’ve read up on prof Malone and on the web he has very mixed reviews, especially from medical experts, but a lot of women on here and reviews I read obviously swear by him. Does anyone know if he believes IC actually exists or is it always an infection and we are just all being fobbed off on the NHS and left hanging with this?

Basically does IC even exist? Are we saying no?

If diagnosing this is simply looking at our wee under a microscope on the spot why aren’t more consultants doing it?? They’ve spent a lifetime studying medicine it seems logical enough to me so what’s stopping them from making a quick diagnosis and solving this with so many patients? The consultant I saw was by no means an idiot so I don’t get why he thinks that method isn’t justified

Haven't had time to read the full thread but look up Professor Malone- Lee on Twitter to see what he has to say about these tests that are supposed to detect bacteria. He's a uti expert based at an NHS hospital in London - can't remember which one. He doesn't believe IC exists; he thinks it's caused by infection that goes undetected by inadequate testing. As a lifelong sufferer of recurrent uti s I have to say that I agree with his theory. Drs have tried to fob me off with IC but once I got the right antibiotics for the right length of time, I got better.

Sorry, just realised that this is an old thread.

Widgit, I know, I was impressed! Very inspirational! It makes me giggle because I feel so 'Viking' lying in my (very shallow) bath of cold water!

Widget apparently diagnosis used to made by looking at a sample under a microscope but then dipsticks were brought it because they gave instant results and cut down on appointment length and were cheap. Both the dipstick and the lab tests were based on studies of higher urinary tract infection and aren’t accurate for lower UTIs (I think that’s what he wrote). Also samples need to be pretty fresh to get an accurate result

. There is one MP campaigning to get the testing and treatment of UTIs changed and Prof M-L plots the progress and treatment of each patient with his own computer programme to hopefully get his treatment plans more widely used. At present I think his is the only NHS clinic offering this treatment, Apparently a 3 or 5 day course of antibiotics has hardly enough time to even shift the bacteria from out the bladder wall, never mind start eliminating it, and then treatment is stopped only for symptoms to calm down for a few weeks and then flare back up over and over. He reckons if initial treatment of a uti were long enough then women wouldn’t end up with what he calls ‘The UTI from hell ‘ which is the stage he sees his (desperate) patients at. All the installations, stretches, dietary advice, tablets to produce less urine, bladder training etc won’t do anything if there’s an infection that is being left to proliferate.

I don’t think he’s saying there’s no such thing as interstitial cystitis but that women are frequently misdiagnosed with it because their lab test results keep coming back clear time after time and that’s the only thIng they can think of causing the problems. The lab tests are coming back clear because they can miss quite severe infections though . I frequently got ++leukocytes from lab where as he recorded 120 from microscope sample.

No Anna not an old thread, still very much alive! My symptoms are still ongoing, using this to kind of record things and maybe help anyone else in the future...

Mouse that’s such a good and informative post thank you so much. All makes so much sense. My mother and grandmother suffered bad utis, can’t help feeling it’s somehow in our genes to be more prone to them in some way, I have two little girls and I just hope things are further ahead for their generation, this is such a bloody miserable thing to have!

widget Prof M-L says he often treats several women in the same family and it’s not uncommon for daughters to have it if their mums do. Certainly my adult DD has a fair few infections also 😣. He provided a lot of info on pdf after the appointment and I showed it to my friend who’s a retired hospital doctor and she says it makes sound medical sense. I think because of trying to limit antibiotic use there is a huge pressure on medics not to prescribe them at all let alone a long course this has resulted in either short courses or no treatment at all which the Prof believes is unethical. The drugs he uses are old school ones with a very low resistance level. The biggest risk with some is the possibility of c-diff but this is very rare. He provided diagrams about how poorly treated infections affect the bladder by thickening it, inflammatory response and bleeding and how antibiotics work within the bladder to tackle it and why in advanced infection it takes so long to bring about a cure. Some he said have to be a managed as they can’t be thoroughly eliminated. I really think in time there will be a change in how UTIs are tested for and treated. There needs to be because the quality of life can be badly affected when they really take hold.

NC was AnnaMaria
I think the best answer is go down the infective route first as it’s treatable. Accepting it’s IC condemns you to a lifetime of misery and heavy duty drugs- amitryptiline for one is commonly used.
If Prof ML, Mr Ali or similar say there’s no infection then you must have IC.
FWIW I had typical IC symptoms- even down to reacting to food and drink. 3 months of Co Amoxiclav- yes it’s a long course by NHS standards- and Hiprex, I am now symptom free, I can drink alcohol and eat what I want.

Clan who diagnosed you? X

Mr Ali x

I am really sorry you are going through this OP. I read your thread last night while sitting on the toilet crying!

I have had similar symptoms since Christmas Eve. It's awful isn't it?

I have had incredibly bad experiences with NHS GPs and UTIs in the past. After about 10 years I saw a GP from Sweden who was over in the UK on an exchange. He immediately said that dip tests aren't reliable, that growing cultures aren't reliable, that I needed a course of antibiotics to treat the symptoms and I needed to see a specialist.

I swear he saved my life, if that isn't being too over dramatic!

I saw someone at St Barts in London, a female consultant. Last night I completed a form to get my notes from the hospital as I can't remember her name and I can't remember the exact dosage of medication she gave me. Anyway, she gave me a dose of Cefalexin every day for a year. In this time I was also pregnant and the constant UTIs were apparently a problem for the pregnancy. The Cefalexin stopped the UTIs.

I do have yellow teeth, and my child has a line of yellow through hers which my dentist says are likely to be from he antibiotics.

Anyway it's been years since I had a UTI but this time I didn't bother going to the GP straight away. I am afraid to say I bought antibiotics on-line. I took a weeks course of nitrofurantoin which helped a bit but didn't completely sort the problem out.

I THEN went to the GP who said I didn't have a problem because dip stick tests showed nothing and they were very reliable and he wouldn't do anything else for me. He told me to drink more water, drink cranberry juice and take those satchets. I explained that a consultant had told me there is no medical evidence for cranberry juice working on UTIs, that she told me drinking too much would make me urinate more so that it would hurt more and that the consultant had advised against doing this. I also told him that the powders make the urine less acidic but they don't sort out actual problem. He wasn't interested. He sent the urine sample to the lab though. It was full of floaty bits!

So I went to the after-hours GP who said he'd been taught to treat the symptoms and gave me a course of Amoxicillin which I took for 5 days.

At the end of the 5 day course I got a call from the original GP who said I did have an infection and he would prescribe Amoxicillin for a week.

I went to collect these from the pharmacy and queried taking two lots of Amoxicillin. She thought I should be on Co-Amoxiclav but gave me the Amoxicillin anyway.

Back to another GP who grudgingly prescribed the Co-Amoxiclav.

The crying on the toilet in the middle of the night has been replaced by feeling, well, okish after having taken two tablets of Co-Amoxiclav.

I am seriously considering buying a years supply of Cefalexin from the internet and treating myself as NONE of the GPs will refer me back to the consultant I originally saw.

Although I might try to make a private appointment with Prf Malone-Lee.

Anyway this is a very long winded way of saying that you can buy antibiotics on-line! I know you haven't had a positive culture, but we also know that a negative culture doesn't mean that you haven't got an infection. Maybe it's a foolish thing to do, I am not sure. I think you should know that the option is there though.

Anyway OP you have my utmost sympathy.

Thank you Fob, I’m so sorry you’re going through this as well. I can’t believe how many of us are suffering and how little is being done or even acknowledged by the medical industry. It really feels like if the standard 3 days of trimethoprim doesn’t do the trick we become an irritant or lost cause and there’s no solution. Even when I saw my consultant, he was all ‘go’ but when he said he predicted I had IC he changed... he lost interest like he’d seen it all before, started saying ‘just drink lots of water, but don’t drink two hours before bed, avoid alcohol etc etc etc’ it suddenly looked pre-rehearsed.

I’m still waiting for my CT results on the shadow/tumour on my kidney, right now I’m struggling to see past that... I’m on amoxicillin again now for a chest infection which I think I had coming as I’ve got so low with all of this. It really takes over your life... the pains all over the place, today’s been a good day with it but I know that tomorrow could be awful again. I’ve deginately noticed orange juice and tomatoes are a big no no for me right now as they are making the inflammation more ‘inflammed’ Regardless of what’s causing it.

I’m definately going to need to see one of these consultants if I don’t get anywhere with the one I’m with... it’s scary.

I’ve got home dipstick tests I use daily and I’ve still got blood coming up in my wee daily, it just goes to the first little pale green trace one every time within about 30 seconds.

I wouldn’t worry right now about getting antibiotics online provided they are ok 🙈😬 I wouldn’t know where to start looking for them? Knowing me I’d land up with some weird laxative with hieroglyphics on 😂

Thinking of you all and thank you for coming with me on this journey x

I think few GPS and urologists have any interest in chronic bladder conditions. I guess it’s not glamorous and is very mundane what with it being just about the commonest infection going. But it’s impact on life is horrible. I was given the message last time I saw the consultant at my local hospital that there was no infection, my bladder and kidney function were ok and all that there was were the useless bladder installations. He was brusque to the point of downright rude. I was so depressed and without any hope afterwards.

There needs to be a new way of testing and treating women so they aren’t led to believe they are infection free when they aren’t and given too short a course whenever they finally concede you might just have one. My urine always shows up blood on a dipstick whIch I was told was due to having cystitis Cystica. In Professor M-Ls view it shows positive for blood and my bladder is full of cysts due to inappropriately treated cystitis and that severely infected bladders bleed and form cysts. I’ll be very interested to see what the level of leukocytes are when I see him next month. It’s not on that about the only chance of getting properly treated is to travel to either Prof M-Ls NHS clinic in London or Dr Ali’s in Yorkshire. Or pay to see them privately.

Prof m-L has retired from the Nhs! The clinic still runs but a GP can’t refer, only a consultant. Bit of a problem if you can’t get the GP to refer you to a consultant.

Prof M-L is still doing private work and his son has joined him. His fantastic secretary told me ! I’m just trying to work out if I can get the money together. Sigh.

If it helps widg I had a frightening things on my liver which have turned out to be scanning issues only.

I used DRFelix which give you an online consultation. Give the answers you know they want you to give and get your antibiotics.

They don’t sell cefelexin so I’m looking to the USA for that...

I completely agree Mouse, this really isn’t on.

It sounds like Dr Malone is heading for retirement, that could be tragic for this situation as he seems like one of if not the only pioneer out there. Then what? I’ll read up on his son that sounds promising. I also want to know what became of this, is the ball still rolling...?

bladderhealthuk.org/news/article/challenging-the-current-uti-testing-methods---parliamentary-debate

I emailed Dr Jenny Rohn who wrote the amazing Guardian article someone posted on here last month .. she VERY kindly and rather amazingly replied to me on Boxing Day, I’ll pop her reply below, it was really helpful and interesting.

Thank you for the reassurance with the scan... I’m really hoping it’s nothing serious... I don’t feel like I’m the best place mentally and definately not physically to handle any bad news right now

This is all pissing me off. I’m getting waves of anger about how utterly shit this is for all of us. Something has got to be done and right now I’m worried that little candles starting to burn out.

Jenny’s super lovely and helpful response to my desperate rant...

Dear Grace

I'm very sorry to hear about your condition. The DNA testing I mentioned in the article was something being developed for the future, which is not available now unfortunately.

However, there are effective tests not used by GPs that can already be used for better diagnosis. The Whittington Hospital has an NHS tertiary outpatient clinic ("The Lower Urinary Tract Symptoms" Clinic, currently located at Horsley Central Community Health Centre), but the GP would need to refer you, and it sounds as if the GP does not believe you are ill (an all-too-common story I'm afraid). You might still try to get referred. I understand there is currently a waiting list of more than a year though.

Treatment is also available privately from my UCL colleague Prof James Malone-Lee. He has a practice in London on Harley Street, and has managed to help many people with longer courses of antibiotics and careful monitoring. There are other clinicians in the UK who also offer help, though I'm not familiar with them or their practices personally. This page summarizes these others, and also gives details for making an appointment with Prof Malone-Lee.

Best of luck

Jenny

Dr Jennifer Rohn
Principal Research Associate
PI, Chronic UTI Group
Centre for Nephrology
Division of Medicine
University College London
Royal Free Hospital Campus
Rowland Hill Street

Two articles found by the ladies on here x interesting reads x

www.google.co.uk/amp/s/amp.theguardian.com/society/2018/dec/12/researchers-call-for-new-uti-urinary-tract-infections-testing-method

www.google.co.uk/amp/s/amp.theguardian.com/science/2017/apr/28/uti-test-used-by-gps-gives-wrong-results-in-at-least-a-fifth-of-cases-study-claims