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

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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

Can I ask for cefalexin and hiprex from my GP or does a urologist need to give these? Woken up in agony again today. Just having my first cup of tea in days through pure retaliation and anger. Been wrapped around the loo most of the night. I’m expecting my third culture (and blood test) back tmro but I’m sure it’ll be clear again.

Tea towel it’s interesting what you said about alkaline so is he implying we basically stay on a normal acid/alkaline balanced diet? Your post is really interesting. If the next month if treatment continues to fail I’m going to book him up.

I’ve booked a private ultrasound for the 27th, I have an NHS one on the 31st but I’m that desperate now to push through this. I’m booking GP for straight after with results and then I get my urology referral, I will ask her if she can prescribe the above for me on the spot. I’m on a mission now this has got to go.

I’ll hunt down the other drug on amazon now and have it ordered for Tmro.

I’m going to keep updating this post for others who may find this useful in their future journeys, there are clearly a lot of us and more research and time needs to be put into this it’s just not fair.

AZO Urinary Tract Health Support Pack | 18 Urinary Pain Relief Tablets Relieve UTI Pain, Burning & Urgency | 14 Cranberry Caplets with Probiotic Helps Flush To Maintain Urinary Tract Cleanliness* www.amazon.co.uk/dp/B00U10G8AA/ref=cm_sw_r_cp_api_i_w10hCbHZWA153?tag=mumsnetforum-21

Ordered 👍🏻 Thank you ladies 👍🏻 X

So sorry it’s feelibg so grim this morning still. Cefalexin is an old school antibiotic so you shouldn’t have any prob getting it but I think the prob is current thinking about antibiotics means GPs wont/can’t prescribe it for long enough or in a high enough strength. You could ask if they’ll give it for longer and see what they say? Hiprex my GP prescribed ages ago so that shouldn’t be a problem. Prof M-L says it turns urine into formaldehyde 🙈. No bugs can live in it. So as antibiotics gradually encourage the pus out of the deeper layers of the bladder wall, the Hiprex kills off any stragglers still in the urine. He is angry that from diagnosis onwards so many of us are so badly let down and that the whole testing system needs changing as it was flawed from the very beginning and the treatment needs totally changing so infections don’t have an opportunity to get as chronic and deep seated as mine (and thousands of women) is. I know this kind of doesn’t help you now but if you can’t seem to sort it then I reckon he’s your guy. He says bladder/urethral stretches are useless as are instillations and diet changes and bladder training. If there’s an infection all that needs to happen is for it to be thoroughly treated. The NHS would save a lot of money too by cutting out all these things and concentrating on the right problem. A months antibiotics Plus hiprex which lasts over a month is £45. My GP has been ok about prescribing them on NHS since Oct.

Ask for a referral to a urogynocologist. I never even realized that such a thing existed and saw one for the first time a few months ago and it's been a major revelation.

I can't believe that you can get azo without a prescription in the UK!!!! I am going to stock up the next time I am there. The first time I was prescribed it here in the US was when I called my female obgyn instead of my male GP for an antibiotic prescription for a UTI and there it was waiting at the pharmacy. Now I always make sure it's prescribed alongside the antibiotic.
Good luck OP. Keep us posted.

You can buy Azo in Walgreens etc in the US. I stocked up when I was in Florida in May.

The AZO link I’ve put up on Amazon is that the correct one??

Yes although you are getting some cranberry tablets too which might not help too much.

You may struggle to get cefalexin from your gp as it is linked to C difficile infection and diarrhoea in the elderly. Even though I’m definitely not elderly and it really works for my recurrent cystitis, I can’t get it from my gp without a letter from my consultant (uro-gynae). Which winds my consultant up no end!
I had repeated and eventually continual cystitis like symptoms for several months and just like you, no positive cultures. The only thing that works for me is long term antibiotics. It’s not ideal but it’s better than being in constant pain. I WISH there was more research in this area, gps in particular are pretty clueless about it (with the odd exception).

Hello OP I used to suffer from recurring cystitis so feel some of your pain although this sounds so severe. People told me to buy Uva Ursi from Holland and Barrett which I had some success with, another time when that didn’t work a friend recommended Apis Mel, you can get at H&b some boots and online (think amazon) I found that helpful, no idea whether it was real or placebo affect. Another time I thought I had cystitis doc diagnosed me with thrush so I tried to keep an open mind that it might be that/use pessaries/oral thrush treatment. Things I cut out (your. Prob come across/know already): red and white wine (white wine is appaz I think worse than red for triggering), obviously trying not to get dehydrated, peeing before and immediately after sex, obvs no sex during attack, no coffee, tea or any similar diuretic, avoid sugary things/drinks (eg most cranberry juice is packed with sugar and will exacerbate not help). Have heard similar re gentle self orgasm being good for flushing out system. Bicarbonate of soda apparently similar effect to the cystitis sachets - also with the sachets and no idea if this is a good thing but I was desperate, I used to double them up so have two sachets instead of one, so more intense. Sorry if that’s bad advice but just honestly what I did.

Basically you need to just drink and pee for days which is zero fun but far better than forcing yourself to do stuff - I know there must be pressure on but you are ill and just need to look after self. Can dp/family manage Xmas dinner and guests?

Also you can get sachets with a probiotic in them for urinary health - again from boots - I took these for a while and cranberry tablet supplements. Again no idea if/what actually worked but just in case.

I had an awful bought of cystitis earlier this year.

Had lots of antibiotics but clear urine tests.

A week using Uvi Ursi totally sorted it out and I also buy Azo from Amazon and use it as soon as I can feel a bout coming on.

So I’ve just got home and I brought some official self test urine kits the GPs use which have just arrived. I tried one and it’s come up again my urine has blood in it. I’m just trying to make sense of this, have all or any of you had recurring or constant blood in your urine dipstick tests? It’s freaking me out becasue I feel so raw and sore down there. I’ve only got a few of these antibiotics left so they aren’t going to work ... it’s late and I’m hurting so much. I’ve just taken my naproxen but it’s doing fuck all. I’m feeling so angry, it’s been two months now it’s christmas eve tmro and I just want to curl up and cry. Has anyone else had the frequent blood? Is this normal for whatever this is??

My little girls are so excited... I’m hosting but just don’t have the energy to do this I’m just so bloody sore! I’m trying to be excited for them but I’ve never felt so miserable. I checked my DH wee and even found myself hoping he’d have a blood trace (horrible I know!) but his is perfect... why isn’t this going away 😩😩😩

Anyone ....

Oh widget don’t panic or worry yourself. I PROMISE things will get better. Honestly this time last year all I did was cry about my bloody bladder. It may take some time but you will sort it out. Not sure about the blood, but there’s obviously some irritation down there. You couldn’t suddenly develop IC overnight, this is clearly an infection that’s been left, has embedded in the bladder walls and caused severe inflammation. It’s a vicious cycle because the more inflamed the bladder wall, the more likely you are to have an infection (which you most certainly do, but they just don’t bloody show up on crappy nhs tests - and most private tests to be fair) xxX

Oh god, I’ve so been there (with the pain, not the blood). It is so awful- trying to pretend that you’re felling normal when you are actually consumed with pain- it’s horrendous. This is the worst thing about cystitis- with any other illness you could say “sorry, I’m off my best because xyz”, but with cystitis you have to pretend that everything is fine because it’s your genitals and no-one wants to know. So, so hard.

Regarding the blood- that is not normal and I would worry that it’s a sign of a deeper infection. If your gp is no use, can you get to a GUM clinic? They should be used to seeing cystitis and normally have a walk in service. I have been to many a GUM clinic for this reason and I’ve never had an STD.

It’s not going away because it hasn’t been adequately treated! As I said before, GPs are shite when it comes to cystitis- “ooh look, here’s 3 days of trimethoprim, that’ll sort it!”. Er, no.

The instruction leaflet that comes with Nitrofurantoin advises you not to take anything like the cystitis sachets which make the urine alkaline. Being alkaline often does make passing urine more comfortable to pass. I don't know the reason why the antibiotic requires you not to use it though.
I have read a couple of weeks ago, that an acidic urine is less likely to grow bacteria. Yes drink and keep hydrated, but don't overdo it, the antibiotic needs to stay in your system, if you drink too much you'll just be diluting it and washing it away.
I really sympathise, I too am suffering at the moment.
I do hope you improve soon. x

The acidic urine thing is true. My consultant has me on hiprex to make my urine more acidic.

Sorry I've no advice I know how painful it can be though, I used to get cystitis every time I had sex, it was horrible, thankfully I'm single now so haven't had a bout in 5 years. I hope you can find some way to treat it after your scan

Hi. Sorry to hear you are suffering at the moment. I too am as well so can fully understand. It's truly horrible. I was diagnosed with Interstitial Cystitis,also known as Painful Bladder Syndrome 2 years ago after having a cystoscopy. My urine samples kept having traces of blood in them which is why I was referred. I still now always have traces of blood in my urine as like you I bought some urine dipstick test strips from Amazon to see if I had an infection or if I was just having a flare up. Basically if it's showing leukocyte and nitrates then definitely an infection,if it's just leukocyte then normally a flare up showing inflammation. Also IC is not the same as normal Cystitis,it's a chronic condition. I'm also dreading Christmas as my heart isn't in it as I absolutely love Christmas but because I'm in a lot of pain and discomfort I'm dreading it and feel thoroughly fed up. I hope you can enjoy the Christmas period and get some answers soon xx

I take a dose of nitroferantoin last thing at night so it’s sat in my bladder all night. Also avoids the nausea that often comes with nitro.

To be honest, if the pain is getting worse, is unbearable, and you have blood in your urine I would be going to out of hours, if not a&e. At the very minimum you need stronger painkillers.