Recurrent cystitis/ uti's

[hez64]

Hi,

I'm 52, and going through hell with approx. 1 bout of cystitis per month. Although no infection present, there is always blood so on constant antibiotics

I have had urethral dilatation and in 2 weeks, will be going through my 3rd cystoscope and now a CT scan to find a cause. This is ruining my life and everytime it happens I am incontinent, even to the point of wetting the bed. I have to sit on my foot to stop the overwhelming bearing down feeling that comes on all of a sudden when I have the cystitis Has anyone been through this??

[wobblybee Administrator Pioneer]

Hi Hez🙂

I really feel for you, it brings back memories for me😐

Recurrent debilitating spasms in my bladder has me doubled up. The number of times I've had checks for cystitis are legendary, but I never saw any blood. I once had investigations, which caused infection. You can imagine the pain, I had to have antibiotics.

No cause was found, so.... I just dread this kicking in again.

I hope the CT scan detects something that can be dealt with 🙂xB

[hez64 in reply to wobblybee]

Thankyou for taking the time to reply. I hope so too but not holding out much luck. I've had cystitis/painful uti's now for 25 years!!

[x_b_x]

Hey

I can understand what you are going through. I get cystitis all the time, I seem to clear it up and within a week or two its back again and it really gets me down.

A few years ago I had a procedure to stretch my urethra to see if that would help. It helped for around 6 months but here I am again constantly feeling like I am passing glass and feeling the need to be sat on the loo all day long.

The only thing I have found that helps for me is sitting in the bath that's the only thing that seems to bring me relief. Also cutting back on orange juice and high acidic fruit juices has seemed to help also.

I suffered from incontinence following surgery I had on my bowel, as they had to inject botox down there it made it numb for a while so I couldn't even feel when I needed to go to the toilet which was embarrassing, ever since I have been having problems leaking. I have invested in a Kegel 8 pelvic floor toner, I use it once or twice a day and already seeing the benefits from it so highly recommend it.

I really hope they get you sorted, I know what a frustration it can be when you are been looked into and feel like you are getting no where. Hopefully the CT scan will get things moving along and some treatment or plan will be put in place to make you feel better again, nothing is worse than cystitis just wish there was a way to explain to people who haven't had it how annoying and painful it actually is.

Hope you get things sorted xx

[hez64]

Thankyou for taking the time to reply.

Since my last post, I had cystoscope which was abnormal so flushings were taken for cytology. Result, abnormal. Sent for bladder biopsies / cystoscope under general. Since then rushed to emergency care and put on iv antibiotics . Yesterday I was told biopsies normal!! Today put on antibiotics again for yet another uti. I'm for review in 3 months with urologist

[Meg-23x]

I've had the same problem. It got to a stage where my GP had to prescribe me some trimethoprim to keep on hand to take after sex or if I felt like I had cystitis or a UTI coming on.

Have you thought about asking your GP to do this? I found that if I had a full blown UTI then taking a course of trimethoprim did nothing, but if I took one tablet just before I felt a UTI coming on then I wouldn't get it at all, so it was more like a prevention method.

What medications have you tried so far? I used to get UTIs every few months, but it's been almost a year since I've had one now, so this method has definitely helped.

I've also started buying the antibiotics online if I can't get a GP appointment (I get mine from here instantecare.co.uk/clinics/... but if you take a different antibiotic try searching the website or looking for another online pharmacy, there are loads around). It's sooooo frustrating when you're peeing every 5 minutes and the next available appointment is in a week just something to think about - wouldn't normally recommend self-medicating, but because you have the same issue as me and constantly get UTI's you know what medicine you need.