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

Widget, what did the person say to you who did your ultrasound? Was it a kidney and bladder ultrasound?

I see you had a bladder and ovary scan as well, did they not scan your kidneys then?

I've been through all this, still have microscopic blood in my wee (but have been told some people just do(, I've had all the tests, scans, cystoscopy etc). I'm fine now, no symptoms for over a year. My symptoms just gradually dissipated themselves over time. I think mine was due to my slight bladder prolapse and I'm 45 so that age 🙄.

I ended up going private and the urologist I saw said that microscopic blood in a woman of my age that didn't smoke or work with chemicals (or a history of) was highly unlikely to be nothing to worry about. I think he said in terms of percentages it was about 3% chance if it being something like cancer.

In terms of this thing on your kidney I'm angry that they have left you dangling. I was told straight away by the person who scanned my kidney that they were fine, I actually asked because I was so anxious about it. I did not get the consultants letter until about a month later saying all was clear.

I was a little bit unusual as they did my cycscopy first, then the scan about a month later (they got my tests the wrong way round), normally they do scan first as that is the least invasive test.

Hi Tanfastic, yes this is another thing I’m confused/annoyed about. I had a private ultrasound a week early becasue I didn’t want to wreck my week off with the family over Xmas. That was a private scan on my urinary tract including kidneys and she said evrything was completely normal and I the report then and there saying evrything was fine. Fast forward a week I had the same scan on the NHS plus slightly more invasive checks on my uterus etc as she did an internal ultrasound. I asked her at the end if evrything was okay and she said evrything is fine she’s not seen anything to be worried about. Then I go to my GP for a referral regarding my ongoing uti symptoms and the GP blurts out a shadow was found on my kidney which of course totally threw me as I’d been told twice they were clear! She didn’t seem overly bothered by it at all, she hasn’t fast tracked me, I’ve still got microscopic blood in my urine. I know I’m 35 but surely an unidentified shadow on the kidney along with the pain and blood for this long would require some kind of urgency?

Has anybody had any experience with shadows on the kidney? There is virtually nothing on the internet to tell me what this could be. I’ve actually not found a single article. I’m trying to stop now but I just can’t gwt this off my mind. I’m just hoping I get some kind of reassurance on Monday, the consultant sounds great so I’m really keeping my fingers crossed for this. My hope is I’ll go in and he will say ‘yes shadows on the kidney are really common’

@Widget123 yes. It was a kidney stone and it had caused me 6 months of pain and cystitis symptoms. I had blood in my wee (invisible to me but picked up on tests), constant cystitis, low level discomfort and pain. I had ovarian scans, a bladder scan, and then the doctor said ' I'll refer you for a CT scan of your kidneys but we don't expect to find anything'

They did though - a 1.5cm kidney stone. I had lithotripsy to get rid of it and that was pretty hideous BUT two weeks later it had shattered and passed and that was that. Cystitis stuff all gone

So don't discount a kidney stone just yet

Thank you for that batfaced, so yours came up as a ‘shadow’ at first? It would make sense becasue of my blood in wee. Did your urethra etc all sting as well? I’m so sorry you had to go through this but I’m so glad you are all cleared up. I just can’t get the word shadow out of my head its terrifying me I’ve got something in my kidney and no one knows what it is

Yes. A shadow was spotted and I was in bloody bits! And I've had cystitis on and off for years but had been clear for a good decade so I was gutted it had appeared to have returned.

I posted on here at the time actually - I was terrified it was interstial cystitis and I couldn't work out why all tests came back clear - bar always being told I had microscopic blood in my wee. I just never ever considered a kidney stone. The bouts of very very bad pain though I now know were renal colic when the damn thing moved a little.

I had months of them thinking it was gynaecological though. And when I had a bladder scan they said it was 'nothing' and all normal so I was lucky that it was then agreed to give me a kidney CT - though they made it clear they were doing this just to 'dot all the i's' and they expected it to be clear

Person doing the scan said he'd spotted a 'shadow' on my kidney and that the consultant would have to interpret it. So that was nice to have that wait!

As soon as they said kidney stone though I thought ' yes! Of course it bloody is!'

I'm not saying you have one of course but your symptoms are similar to how mine were so don't discount it just yet

And re the stinging - yes. I just had classic cystitis symptoms. That annoying dragging feeling, always having to go, stinging and pain

Oh god BatFaced... your story is identical to mine... absolutely identical. I ruled out kidney stone because I did ask my GP if it was a possibility and she said no because they can see those clearly on US. I get a stabbing pain in my side around my ribs here and there but I've not thought anything of it until now I just thought t was something to do with digestion. I too had recurrent UTI's then they just pretty much stopped for a decade and now this... no one can work out why I have blood and no infection, they're also foraging around in my lady bits wondering if that's the cause but I get this weird cold feeling in my bladder itself and then the urthera, I can't help feeling it's just something going on with that. All my other bits have come up clear anyway (although yesterday the doctor did check my cervix and do a load of STD swabs... which I'm guessing will be clear as I've been with hubby for over 10 years now).

There's a chance this isn't a stone but you're just about the only person on the entire internet who's also been diagnosed with a 'shadow' so it's given me a little bit of light at the end of the tunnel when I feel utterly shit. Thank you x

About the blood and no infection. I’ve had blood show up on every dipstick test over the last 5 years and mostly been told that because lab tests came back as negative I had no infection. When I had my private appointment in Oct he found a massive amount of leukocytes under the microscope which proved I did have a chronic and severe infection that the lab tests were consistently missing. So you may well have an infection even if you’ve been told you don’t. I hope there’s a simple explanation for the ultrasound findings on Monday.

Isn’t it crazy. I’ve read that Dr Malone checks fresh samples under a microscope on the spot so he gets a clear picture. It’s clear to me why this works and I’m not even in medicine. I don’t understand it. Surely if all of the urologists adopted this method sure it would take them a couple of minutes but would save thousands on pointless invasive tests. I can’t believe how flawed this process is it’s so frustrating. I’ll see what he says Monday but I’m guessing I’ll be going for a private CT to stop me bricking it about this shadow and then go on the NHS list for cystoscope, I’ve no idea how long this one would be. I’m reluctant to have it right now anyway being so sore as I keep reading how it’s triggered huge infections etc. Oh I don’t know.

I totally agree Widgett. Looking at a fresh sample under the microscope and measuring the amount if leukocytes and urothelial cells present as well as taking a history is all Prof M-L did. How he measures 120+ leukocytes as opposed to the local lab recording 0-3 each time, just shows the inaccuracy of the standard testing. He said generally if you feel you have a uti then odds on you have. Before the arrival of dipsticks apparently doctors did use a microscope but the dipstick makes things far easier and quicker. From what he said, the earlier you can diagnose a chronic infection the easier and quicker it is to treat because the bladder starts making a thicker lining to protect itself after a while and pus cells start hiding out in the new layers. Cystoscope discovered my bladder lining was full of cysts and gave it a fancy diagnosis and or prescribed bladder installations by catheter which did zero. Again the Prof said my bladder was full of cysts because that’s what a bladder wall looks like after years of inadequately treated infection and the installations which work on something called the GAG layer are pointless because that’s not going to deal with infection which is causing the symptoms of cysts, inflammation and other uti stuff.

Also have a book recommendation for you. It's called 'Understanding Cystitis' by Angela Kilmartin.

Now, hear me out on this! I know it's decades old and of course you'd expect that we've made huge advances with cystitis now (err yeah right) but this book cured my chronic cystitis. I followed it to the letter after suffering for years and it worked. Anyway I'm not touting it as some miracle cure and I'm sure some would say it's very old fashioned but it's just sensible advice and I found it really comforting when I used to read it decades ago. It's on amazon for a penny I believe

And the thing with cystitis is it's just so fucking debilitating. You forget just how bloody awful it is until it rears its ugly head again. And all the advice out there is so so conflicting.

I find it really odd that you've had two scans and both have said all is clear yet a gp then tells you otherwise.

Who is going to interpret this "shadow" and tell you exactly what it is?

The first one was private and tbh she was horrible and itvall felt rushed. Total opposite of what I’d hoped for. The second was the NHS one and she was absolutely wonderful and spent ages checking me. My mum said they aren’t qualified/allowed to tell us the results apparently so I suppose me asking her if evrything was ok threw her and she just said yes so not to worry me when she didn’t know what she had seen. I’ve asked my surgery for the full ultrasound report along with the referral letter which I’ll collect tmro so I’m hoping the consultant on Monday can look into it. I’m out of the GPs hands now so I guess the barrage of tests heading my way will determine exactly what it is. I’ll have a private CT/MRI scan on it if I have to but I want to know what it is as it’s driving me crazy. The biggest part of me is just hoping it was a mistake and there’s nothing there, that or it’s just a small bit of scar tissue. I suppose time will tell.

I’m not hugely surprised by any of this tbh. It’s taken me around 5 GP visits with the same problem just to get a referral. My mum was turned away and misdiagnosed time and time again on her 40s in the end she’d been left two years with ovarian cancer, the sonographer almost had a heart attack when they finally did a scan and saw the size of it. I’m staying hot on their heels, I want answers.

I don't blame you widget. Dh's mum had Ovarian cancer that was misdiagnosed as IBS.

I don't think sonographers are officially supposed to tell you but a lot of the time they will "off the record".

Mine actually said to me, don't worry there are no tumours! I'm sure she would have got in a lot of trouble if she was wrong.

My bet is that either the gp has got the wrong end of the stick or it's a small kidney stone. Do let us know how you get on x

I'm not gonna say try not to worry as I know you will! I nearly had a bloody breakdown when I was going through the same so I know what you are going through, it's very stressful.

I can’t stop googling 😩 I just don’t understand it I just read another story of a woman and they found a shadow on her kidney and immediately told her it was 95% likely to be cancerous. How is one shadow different from another and why is mine not really being acknowledged? My GP said mine didn’t look like a stone but unless sonographer sent her an image how did she see it? It’s late and my heads in overdrive. One minute I’m okay then I feel sick and shaky. I keep going to the loo and my urine flow is still total shit it’s like I’m peeing past a golf ball. I’m feeling so deflated and pissed off!

Oh widget I'm so sorry. I suffer from anxiety so really do get how you are feeling. I had the same as you for three months. I was climbing the walls with it, I felt Lao bloody desperate and like you wanted answers. I never really got any but as soon as they told me it wasn't anything to worry about my symptoms seemed to gradually disappear over time.

I could kill your gp for telling you that. Why didn't he just leave it to the experts if he didn't know what the fucking shadow was.

And stop googling because it only leads to yourfucked.com Doom and bloody gloom.

Just try your best to get through the next few days when you should get some answers.

You need to stop googling. The chances of you having kidney cancer are extremely low. My father has it and his symptoms were nothing like yours

You've either got a stone, scarring, an infection or a slight prolapse. Maybe you're a VOMIT? That's a Victim Of Modern Imaging Therapy. That shadow is just part and parcel of you

Just try and stop looking up stuff to make it fit. It'll just make it worse

And - forgive me here - if you err stick your hand in as much as you can, can you feel anything that maybe shouldn't be there? You saying it feels like wee ing past a golf ball makes me wonder prolapse

Wow that Vomit thing is actually really interesting and probably sadly true. Just been woken up by hubby so went for a wee and my urethra is on fire so can’t get back to sleep now.

Batfaced I’m so sorry to hear about your dad. I did think it might be a prolapse recently but my GP did an internal check last week and said there was no sign of a prolapse. Even though I recently was able to feel my own cervix which I’ve never had before.

This thing does seem to have have some correlation between what I eat and drink, as in if I eat and drink less it calms down. I considering trialing a 24 hour water fast just to see what happens. I’ve also heard of this renal diet which just cuts our any nasties and trigger foods which wouldn’t hurt.

Ps. Ordered the book! 😊

Picked up my referral letter today from the doctors to take on Monday. She’s put down that the ‘shadow’ is a suspected Angiomyolipoma. Basically this is a rare benign tumour of the kidney. Apparently these can be aggressive and can suddenly haemorrhage at any time. I’m so upset about this. Why wasn’t the GP honest with me and why wasn’t I told this? I spoke to her on the phone and she said she’s not concerned about it. This ‘shadow’ is only 4mm. This is a really rare type of tumour she’s suggested, is that realistic from an ultrasound?? I can’t help feeling that that’s quite a specific diagnosis for something so small without further tests? My hope is either that it’s just scarring or a simple kidney cyst both of which are much more common.