Help/experiences with discomfort after urination. UTI? But limited response to treatment

[Rochyella84]

Hi ladies,

Hoping for some insight on this one as I'm feeling quite upset. I am prone to cystitis - normally get it once or twice a year, sometimes can flush it out with lots of water and D-mannose, sometimes need antibiotics.

Anyway 3 weeks ago I got symptoms and it got quite painful quite fast.

• 3 days nitrofurantoin prescribed - seemed to do the job, thought that was that.
• Two days after finishing treatment, symptoms came back again.
• This time got prescribed 3 days Trimethoprim - did nothing at all.
• I did another sample which showed infection but not enough for them to grow and determine what exactly was causing the issue - because the Nitrofurantoin seemed to work first time, they've now given me a 7 day course.

I'm 3 days in to treatment and although there is a slight improvement, I'm not clear and I just feel like its not going to work.

I have only one symptom - discomfort after I wee. It's not the agonising burning I had at the start, it's just a bit twingey and sore at the end of the wee and for up to an hour afterwards. No blood, no cloudiness, no pain during urination, no pelvic or bladder pain whatsoever. Just the discomfort afterwards.

I am wondering about interstitial cystitis but I dont really seem to have those symptoms. Or maybe I'm on the wrong antibiotic. Has anyone had similar? I'm starting to feel quite anxious now as 3 weeks is a long time to put up with these symptoms and its starting to affect me emotionally.

anyone? :(

I've had very similar, once when I was 30 - I suddenly started getting bouts of UTIs. After about the fourth one I was still getting symptoms like burning but I was also experiencing pain during sex frequently. I had lots of tests done including a private gynaecologist. I can't remember the exact outcome but I was prescribed oestrogen cream for a few weeks to build up the wall between the vagina and anus as that can get quite thin and cause UTI issues. Although the sex pain never went away completely, I went 10 years without a UTI... until last year where I think I had another.

Once again symptoms did not go away and it was so much worse than last time. I constantly felt the need to pee, had burning, pain in unitary tract and I was referred to a urologist. This went on for a few months. I am now taking oestrogen cream again and low dose anti depressant for nerve pain. I also gave up caffeine and am about 90%better. The point of this is that other things can play a part in UTI symptoms. I believe mine are low oestrogen levels, maybe peri menopause. I fully sympathise though, it made my life absolute hell.

Hello! I have very similar symptoms and they are driving me crazy. I can’t concentrate at work or enjoy anything! Are you feeling any better or did you find anything to help??

Hi, I’m doing better but it’s been fairly crap.
I ended up paying for a specialist urine test with a company called focus labs and they found enterococcus in low levels which the NHS tests hadn’t picked up. It’s resistant to all but two antibiotics. I saw a private urologist who prescribed me a month of antibiotics. I also take Hiprex twice a day. It’s really settled down in the last week or so. Ive still got 16 days left on the antibiotics so just hoping that it doesn’t flare up again afterwards. I also came off the pill at the end of December.

thank you for replying I actually did that test a few weeks ago and had the exact same results plus E. coli. I haven’t found an antibiotic that’s helped either do you mind sharing the one you are on?

I had this a few years ago , GP eventually prescribed Amatriptyline , which did work . I did my own research & decided I had painful bladder syndrome. It did go away for about two years, now it just flares up occasionally & a week of Amatriptyline dirts if out. My theory is it was kicked off by a UTI , I call it my twitchy bladder !!

Sorts it out!! 😆

What dose of amitryptaline do you take?? Did you take anything else to help it? I have had this for years 😭

I take 20mg at night, 10 didn't work for me. It does help you sleep too ! 😁

Nothing else works, tried cutting out caffeine , red wine , drinking more water .. it gets worse during the day when I have it, I always wake up without any discomfort

I've currently been seeing a urogynacologist for bad cystitis, can ne fine one day, passing blood the next. She did a cytoscopy, said bladder was healthy, but said that it was very red, dry, sore and inflamed down below, that skin was very thin (I didn't know this wasn't normal, nothing to compare it too!) She said this meant I had very little resistance to an infection. She has prescribed estrogen pesseries, these should settle the skin down, make things less dry and thicken the skin up to give me much more natural resistance to an infection. Ive been on them 4 weeks and can already see and notice a difference. All the antibiotics in the world were never going to change the environment down there! She also advised cutting back as much as possible on caffeine as it can be an irritant and to introduce live bacteria into my diet as it can help rebalanced the whole system. Having a ct scan of my kidneys next week as the doctors wanted to check the whole urinary tract.

Im on Nitrofurantoin. I’ve been on it several times but not for this long. Im actually a bit symptomatic again today. I think it’s linked to hormones

Do you mind me asking how old you are?
I’ve read a lot about the low Estrogen connection. I’m 38 and not perimenopausal but I think it’s still possible I suppose and I notice definite links to my cycle eg when I’m ovulating my symptoms are much better then they worsen at times in my cycle when Estrogen is lower. I’m tempted to ask my urologist to prescribe.

@Rochyella84 I'm 48, think I'm perimenopausel, but difficult to know as I'm on the mini pill, so could be masking it. Definitely worth considering the pessaries

@Rochyella84 I know this is an old post but I wondered how you got on and whether things resolved in the end? I ask as I'm going through a similar thing - also enterococcus! Currently 3 weeks into the antibiotics and giving up hope a bit.
Xxxx