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

I have microscopic haematuria on dipsticks. I’m supposed to have a cystoscopy at some point but it hasn’t happened yet.
On the chronic UTi forums nearly everyone has it, it’s just a sign of the infection- don’t panic about it.
Hope the Azo comes and you manage a comfortable Christmas.

How are you feeling today, @Widget123? Any improvement at all? x

It’s 6.20 and I’ve woken up with a completely dead foot. It’s taken me half an hour to get the feeling back before I could walk on it. It’s worried me sick, I’ve just double checked nitrofurontoin side effects and numbness of the extremities is apparently a common one. Now I’ve stopped moving it’s coming back, I’ve never had this before so I know it must be related to the medication. I’m hurting down there still. I’m not feeling good at all

Sorry to hear that you are still sore. I am as well. Both the front and the back I have problems with. Plus I think I've got thrush on top of that 😥. It sucks doesn't it . So sore and tender.

I would go to docs/walk in clinic/a&e - blood in urine is serious and you don’t sound at all well. Push push push for the strongest treatment you can get. Try the herbal supps as well assuming there is no conflict. Cystitis is agonising and docs need to help you out. I’m so sorry you’re going through this as Christmas, so wretched. Wishing you better

OP, how are you feeling? If it’s any consolation I’m having a rubbish day and need the loo all the time and have to deal with my 11 month old ds who is teething! And DH doing nothing to help but make more mess..... Fun! Merry Christmas all! XxX

Christmas for all who are suffering today

Hi all, not great again today. Other than down there I feel good in myself just wish this constant soreness stinging and needing the loo would end. I’ve read quite a lot of women who have frequent microscopic blood in their wee with these symptoms so I’m trying to stay calm about it. My scans the day after tmro so hopefully that will rule out any nasties then I can follow on with my referral. I’m hurting a lot down there but trying to be positive and enjoy Xmas as best I can with my little girls. AVO arrived and I’m shocked at how much it helped yesterday... just taken a second batch, it’s strong stuff and I nearly jumped off the loo like a cat when I saw the colour of my wee 🤣 I’m also in triple strength cranberry, d-mannose and naproxen. It seems a lot of women have this I just wish they knew more about it. I’m so sorry for those of you suffering today... it’s a horrible horrible thing. Let’s all just promise ourselves a crazy one next year 😘 xx

You are coping remarkably well OP. This time next year you'll be recalling today and wincing in sympathy with yourself. It's bloody bloody misery. If men had it they'd have sorted out better treatments by now imo. Keep drinking water and you will feel a bit better by 27th I think. It'll hurt when you pee but that awful sense of your body lying to you ("you need a pee, honestly, a huge long reviving relieving pee is here") will have gone and that overwhelming focus on your bladder and your bits will be easing. Happy Christmas

I feel so much sympathy for you. I had UTI type symptoms regularly through my 20s but thankfully less so now.
However it still completely floors me for a good couple of weeks and just when I think it's gone, back it comes in the middle of the night. Total exhausting agony

I failed miserably... everyone was drinking and after weeks of no alcohol I caved and am now pissed as a fart 😩 I’m going to pay for this tomorrow and for the entirety of the next week I know... my bladder is like my enemy right now. I’m just sitting on the loo telling it what a dick it is. It’s stinging but the drink has muffled it. I caved... I’m crap at this.

Mummymayhem how are you feeling? X

How are YOU feeling OP? Did the booze have any impact for good or ill?

Hi frolicks, I had a very bad night last night but then today it’s back to where it was. It’s so inconsistent. I had an ultrasound today on my urinary tract and ovaries and everything is normal which rules out anything sinister going on down there. I’ve got my gp appt booked for next week when I’ll get my referral to a specialist so I suppose it’s just a waiting game. I am very curious to try the online microscopic urinalysis testing I linked the other day purely to see what comes up.

Hi Widget123,I'm ok,thanks for asking. Still bit sore and painful and Ben naughty indulging in Christmas food 😆. I'm going in on January 8th to go under general anaesthetic and he mentioned injecting haemorrhoids but until he has a proper look I don't know if anything else has changed since last January when I had similar done. Bit worried I must admit. How are you doing? X

Oh mayhem please let us know how you get on on the 8th and what they say, I hope you’ve had an okay day today. There’s no pattern to mine so I’ve given up trying to find one, it was ‘there’ earlier today but this evening it’s flared right up and is painful again. An hour ago I though sod it and decided to do a check on myself internally... and I felt something I’ve never felt in my life... my cervix 😳 I’ve done checks in the past and never felt it before (tbh I didn’t even know you could feel your own it really took me by surprise and freaked me out quite a lot). I spoke to my mum and she said my grandma had a uterine prolapse and due to that had constant bladder problems. I’ve read up and the shoe fits. I’m not saying that’s definately what’s causing my symptoms but I’m going to get the GP to do a pelvic exam and see what she thinks. If this was causing my symptoms it would add up to a lot of things, why my symptoms are worse when I’m sitting and late in the day, the fact that it’s come on after I’ve started the gym where I’ve been doing rigorous excercise and lifting weights, the pressure I feel. It’s a possibility so I’m going o start my kegal excercise tonight and hit this head on as another angle. I took Naproxen two hours ago and it’s done f-all. Feeling fed up tonight... I hope some of you are feeling a little brighter and are able to enjoy some sort of new year x

It’s 6am and I haven’t slept much it’s been a bad night, I didn’t take my AVO yesterday... I thought I could get by without it as it says only take for two days, I’ve only been taking one doseage a day but that does take the edge off. Have any of you been on this more long term? Laying here in the dark and I can’t sleep, feeling really emotional right now with all sorts running through my head. Just done more reading and so many people with my symptoms and so many different outcomes from IC to kidney stones only revealed on CT to embedded infections and oestrogen related problems, prolapses of the cervix or/and the bladder. I just feel like crying. I just want to get back to myself again I can’t bare this....

It could be months if not longer before I get a proper diagnosis for this, so many never even seem to get one. Eveywhere isbtelling me to drink water but if anything the more I drink (even water) the more irritated my bladder gets. Whatever this is it’s not going away on it’s own.

Widget can you afford to go private? You need to see someone soon. It will be okay xxxx
Don’t read stuff online!

I’ve got my NHS scan tmro I had a private one the other day but this one will be more thorough and I’ve got an appt booked with GP to give me a referral and review scan results next week. I’m going to wait for my referral date and if it’s not within 3-4 weeks I’m going to go private. It just all takes so long 😢 Thank you xxx

My heads getting blown by the stuff online there’s just SO much and so many people and so many reasons and causes for this I just don’t know where to start... I’ve read stories I could’ve written myself and they’ve all had such different causes and outcomes. It’s just horrible. I feel like the GP is just looking at me like I’m crazy. I don’t know if I need to see a Urogynaecologist and urologist or a gynaecologist... who do I refer to?

I see Mr Ased Ali, based in Yorkshire. He’s a Consultant Urologist with a special interest in women (most urologists so mainly men as due to prostates they have more waterworks issues). He has done research into Chronic UTIs.
Someone like him would be a good starting point.

What therapies does he advocate, annamaria? He’s local (ish) to me.

In terms of drinking water, I find that going frequently makes my symptoms worse as I get the most pain directly after urination. So I time my water in take eg nothing for 30-60 min after I’ve been to the loo, then a big glass, then a big glass every hour or so. It’s walking that tightrope between keeping my urine dilute but not making me need a wee every 10 minutes. So tedious, but I’m in the habit now and don’t think about it so much anymore.

He offers a range of traditional- cystoscopy, instills, surgery- and more modern- Hiprex, naturals (eg oil of oregano), antibiotics where indicated. He uses broth culture to help advise antibiotics if needed.
He’s lovely (and his wife’s a dentist - all the best people are).

Oh he sounds great. I’m down in Cambridge though so not local to me annoyingly. I am considering the guy on Harley a street though I’ll just see where the next couple of weeks takes me with scans and referrals then prob book him in. I haven’t heard of oregano being used I’ll look that one up. Back on AZO today so it’s been a bearable day with my little girls at a farm in norfolk. Sergeant that’s the same as me, going definately makes my urethra burn and sets things off. I dread my night and morning wees... how long have you had this for? Have you tested for a microscopic infection? X