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

For over 10 years but nowadays it’s under control and I am mainly pain free if I am careful (no trousers, tight clothes, swimming pools, prophylactic antiobiotics). I don’t think I’ve been tested for microscopic infection but I saw a private consultant when things were really bad at the start (was in constant agony) and they put me on a tonne of antibiotics followed by a long term low dose. It’s the only thing that’s worked for me.

Do you mind me asking which long term antibiotics they put you on and the doseage? The next chance I get I think I’m going to ask for this as it seems to be the only solution!

Ciprofloxaxin to start with which is broad spectrum. This was only for a short period. For long term prophylactic use, it’s been either nitroferantoin or cefalexin. I found cefalexin more effective, but gps don’t like prescribing it. I’m on Nitro now, 50mgs at night. I have in the past had stretches where I only needed to take it after intercourse but I had prolapse surgery recently (my nether regions are endless fun ) and have had to go back to a daily dose as I had a flare up after the surgery. Hoping to go back to just when I need it eventually.

If looking at London, Prof Malone Lee is the man apparently.

Yes he’s the one. I’ll definately be contacting him if I don’t get anywhere over the coming weeks. I had bad side effects with nitrofurontoin, I kept losing the feeling in my feet so came off them early after being prescribed them for a week. I haven’t been in ceflaxin but definately will consider this. I’ve also done a week of amoxicillin and a week of trimethoprim but I feel like I need a longer haul drug. It’s calmed down again tonight but I’m assuming that’s because I took AVO today even though my pee has now returned almost to normal colour. Thank you all so much for you help it’s helping me so much and I know will help others searching in the future x

Sergeant it’s interesting you mentioned a prolapse. Did the doctors ever mention a connection between this and your bladder? My grandma had a prolapse and suffered chronic cystitis her whole life, the same goes for my auntie. I mentioned the other day that I can quite easily feel my cervix at the moment which is new to me and I’m just wondering if there’s any connection... I’ll ask for a pelvic exam next time I see my GP just Incase

From what I’ve heard Prof has long waiting times so I’d get booked in.
Co Amoxiclav worked for me.

Widget sorry you are still suffering. You asked about drug dosages. At my first appointment with professor Malone-Lee last Oct he started me on 1g of Cefalexin twice daily and 1g of Hiprex twice daily. I go back to see him towards the end of Feb. I am doing so well so far and the sheer relief of being able to go out for the day with 3 loo stops and getting up mainly once a night is incredible. My wee doesn’t smell anymore. It used to have a strong almost fishy smell and at one point I got the GP to swab for bacterial vaginosis. That came back clear. Now there is zero whiff.

I’ve been on co amoxiclav before and I was good on it, Anna is that your long term one? How much are you on? Sorry for all of the questions just trying to get my eggs lined up!

Frozen was that October 2017? How long after taking them did you start to notice a difference?

I’m scared of literally everything right now... tea, sugar, coffee, any fruit... tomatoes, sanitary towels with ‘blue’ linings, definately no tampons... any kind of soap ‘down there’, sex, vitamin tablets, sitting at my desk too long, where my nearest loo is... I’m even starting to dread the school walk again next term. And I’m bricking it about having to hold a litre of water again for the Ultrasound tomorrow becasue the pain is insane.

I keep waking up in the night with anxiety... the pain the urge to go to the toilet all of it seems so much wors in the middle of the night, I keep getting scared and convincing myself something more sinister is going on down there for it to be going on like this and to be this uncomfortable. I hate this... it’s getting sore again now so I’m going to go and make another hot water bottle drag myself to bed and try to sleep before it gets cold. This is total shit shit shit

Good luck with your scan tomorrow. I was going to suggest Prof Malone Lee as well as he apparently is very clued up with it all. I don't know if you are in any IC groups on Facebook as I'm in a couple of different ones and it is so helpful for any queries or worries you might have. Someone has usually been through the same . Also quite a few on there have been to see privately Prof Malone Lee as they were getting desperate and he's in the know. I think he may be doing NHS again as well now but I imagine the waiting times are fairly long.

Yep, it is! It’s so hard to explain to people that don’t suffer with it but it can be all consuming.
For sanitary towels, I use organic ones with no plastic eg natracare. They don’t aggravate me like always etc.
My problems started quite a bit before my prolapse but I went through a period of several years (spanning pregnancy and bfeeding of my dc) where I was pretty much cured, just had to avoid trousers (these are a massive trigger for my cystitis which is a right pain). Then my symptoms came back around the same time as my prolapse, which is probably had undetected for a year or two, got a lot worse. This was due to some very silly heavy lifting in the garden- lesson learnt there! The doctor who treats my cystitis also did my surgery and thinks the two are probably linked but I may require further surgery for a mild cystocoele and I’m not keen on having that done until I really need it. One major surgery is enough for the time being!

Widget my first appointment with Prof M-L was this last Oct is 2 months ago. I started to see a difference towards the end of the first week as the nasty smell had gone and I wasn’t needing to go to the loo as often. I didn’t expect there to be any improvement so quickly. He does have an NHS clinic at the Whittington hospital in London but you need a referral from a consultant not a GP. If you see him privately you don’t need a referral. The waiting time for a private appointment was 2 months and over 3 months on the NHS. My GP doesn’t seem to have a problem prescribing the high dose cefalexin now that I’ve seen this guy. Before it was like getting blood out of a stone to get any antibiotics off them even though I knew I had an infection. The GP didn’t believe I did though as lab results were always clear. After 5 years of hell and feeling as if I was going mad, I am getting my life back. Absolutely nothing was helping and both the urologist at local hospital and my GP had clearly given up on me.

My consultant doesn’t do antibiotics for years- tends to be 6 week courses. I had full strength Co Amoxiclav for 12 weeks, then went onto low dose 100mg nitrofuratonin. I’m now on just Hiprex but I have antibiotics for flares/ for 3 days after sex.

Feeling very shaky and tearful tonight. I’m still having horrible symptoms but went to the doctor today and the ultrasound I had showed up a shadow on my left kidney. Some sort of growth. Naturally evrything she said after that was a blur so I stupidly didn’t ask much about it and she didn’t say much. I’ve been referred to urology for my bladder problems but she doesn’t think the two are linked. I have no idea what shadow means... let alone shadow on the kidney. All I can think of is the worst. All of this is really sending me to a bad place mentally, I just can’t pick myself up.

Hand holding Widget

You poor thing. What sort of referral did your GP make do you know? Urgent or regular? A growth doesn’t equal cancer. It could be a cyst or a stone but as soon as the word is mentioned we usually go straight to the worst possible scenario. I have cysts all over my bladder wall which are from chronic infection. I also always have blood in my urine for the same reason. So you can get very worrying symptoms with very mundane causes. Your GP might not have the expertise to know if your bladder symptoms are linked to the kidney findings and the urologist will be able to make a more precise diagnosis. I’m so sorry you are feeling so crap both physically and mentally. I hope you get an appointment through soon and some answers and treatment. Try as hard as possible not to jump to the worst case scenario because there’s lots of other reasons for what’s going on.

Could it be from previous kidney infection? Just a thought as I have a scar on my left kidney from infections when I was younger.

Holding hands, widget.

Hope you get some answers soon

She said because I’m under 45 (I’m 35) regardless of anything else she can’t do an urgent referral, I think I might just call up tmro and try to go private... this is exhausting. I stupidly googled Shadow on Kidney (looking for some kind of reassurance) and hardly anything came up, only that solid masses in the kidney are usually malignant which has sent my head spinning. Anna how did they find your scar tissue, do you mind me asking what does it come up like on an ultrasound? I had so many uti’s in my twenties. If they never went to my kidneys although I think I read somewhere they can still affect them. I’m in bed cuddling my little girl now, I’m just so tired of this pain and now this it’s been months now I just want this to end. Thank you all for your support. It’s been a huge help to me through this x

The consultant radiologist ehobdid the ultrasound just said it was a scar, he didn’t show me it.
Go private- get the referral today is my advice, if you can afford it, or have Bupa.

Agree that you should go private to shorten the wait - it's so terrible having that anxious feeling and no answers.

Could you call the doctor and ask for more information? It's natural that you would have been a bit flustered in the moment and you might want to ask some follow up questions.

Thanks you, yes I’m going to start making calls first thing and get this sorted x

Got a private consultancy booked for Monday night at the spire in Cambridge. Suppose it’s just a waiting game now x

I’m so glad you have an appointment for Monday. It could have taken months for you to get one otherwise. I wish I’d gone privately years ago. Best of luck for Monday x

Thank you 😊I’m going to stay off of google now until I’ve seen him. There is virtually no info about ‘things which grow on kidneys’ other than horrible stuff so I’m just going to enjoy the weekend and focus on Monday now. Thank you all xx