Constant uti feeling and swollen urethra no uti

[VioletRose91]

I’ve been dealing with constant uti symptoms and what feels like a swollen urethra for ages, doesn’t actually burn to wee but get a horrible feeling afterwards, and feels like there’s a bubble almost stuck in my urethra! I’ve had lots of uti tests and and a sti check, me and OH have been trying for a baby for the past 2 years so had plenty of swabs..

GP doesn’t want to know because there’s “no infection” there’s blood traces in the tests and I’m SURE somethings going on!

Has anyone else had this? Apart from being painful It’s driving me insane tbh.

Yes! I had this for ages. I felt like I had a lead weight in my bladder. I had UTI tests and the GP kept saying there was no infection. My sample were all clear.

I went online and diagnosed myself with interstitial cystitis and bladder pain syndrome. I gave up hope.

I would go to the toilet and almost shout. It wasn't a sharp pain, more a dull ache that would persist after I went.

Then I had a kidney stone and was treated with a broad spectrum antibiotic. Just in case.

Once again, tests came back clear.

But since that antibiotic (which was extreme and gave me thrush), I have been totally normal. It changed my life after so long of having maddening UTI symptoms.

I'm sorry you are going through this too. X

If you are trying for a baby, I assume you've been having a lot of sex. That is often the cause of urethritis ( which is what you describing). I'd suggest using some fertility-friendly lube when having sex, and don't use soap when washing your genital area. Good luck !

I had exactly this problem and my GP diagnosed me on very little evidence with interstitial cystitis. A urologist was later very annoyed about that, after an internal exam showed no sign of it. He then diagnosed me with chronic pelvic pain syndrome, which is just a description rather than an explanation. Lots and lots of googling led me to a pelvic floor physiotherapist, who concluded that I have pelvic floor dysfunction - a tight pelvic floor can really irritate the bladder. By that time, my entire pelvic floor was in spasm and I could barely sit.

It could be IC, it could be a different infection as the PP suggested, or it could be your pelvic floor but there are avenues to investigate. It can feel hopeless but be proactive. Don't let your GP fob you off - ask for a referral to urology. Pelvic floor therapy is usually private but my therapist is absolutely amazing so I would recommend consulting one. I'm doing much better now.

Also - I found the best sources of info are the Reddit page on pelvic floor dysfunction and also YouTube videos by physiotherapists. Look for pelvic floor meditation videos too, to help things relax. Avoid at all costs Facebook groups on pelvic pain, as they'll make you lose all hope entirely. Good luck.

Yes I had this, although while ttc I also would get an actual uti every month on top of the constant symptoms you describe. So I'd get antibiotics prescribed, finish them but still have that horrible bladder feeling but any tests would be clear. It was so frustrating.

Drinking TONS of water everyday helps and, funnily enough, and no idea of the science behind this, but the thing that eventually stopped this was...getting pregnant! My baby is now almost 2 months old and I haven't had those symptoms since the first month of my pregnancy. Part of me was dreading pregnancy as its supposed to make you even more prone to UTIs but for me it somehow was the opposite

I meant not !

There's a recent episode of Woman's Hour where they talk about cystitis tests being outdated and not fit for purpose. Just because you have a "negative" test doesn't mean you don't have an infection. Drs should treat symptoms. I would be asking for antibiotics.

I had this for a few years OP. I took some probiotics for women on the off chance they’d work, for a couple of months and it just went away.

Also - always empty your bladder after sex
No matter how tired you are. I found this too made a difference at times.

@lifeissweet can you remember what antibiotics you was given? I’m desperate to try and get this sorted and if it needs me begging to my gp for some antibiotics il try!

@ToLiveInPeace I’ve been told I have IC but I don’t believe that, I think they just don’t know what’s causing it! Has the pelvic physio made yours much better? I find it really difficult to pass urine when I’m in a flair like everything is tensed up down there so maybe my pelvic muscles are too tight? X

there's lots of things it could be... it could be an embedded infection which does not get picked up by NHS testing - ask to be referred to a urologist (privately if you have to)

It could be pelvic floor spasm/tightening causing it - a session with a private physiotherapist couldn't hurt to rule it out - but make sure its a pelvic physiotherapist - they will need to examine you internally to see if your muscles are in spasm.

It could be low estrogen - (i'm not sure how old you are sorry) and you don't have to have gone through the menopause for it to be low estrogen which causes dryness down there and will irritate the urethra aswell - you could try an internal moisturiser and lube - i recommend YES products because they are the least irritating.

have you had a look down there (in a mirror) to see if it is actually swollen?

Insist on being referred for further checks - GP's haven't a clue when it comes to embedded infections

Try taking an AZO tablet (amazon) as this will numb your bladder/urethra. You can't take it long term though, 3 days max i think it is and beware it will stain your underwear yellow! but it helps to relieve the pain temporarily.

My endometriosis causes symptoms like this as it’s on my bladder, if you’ve been TTC for a while have they ruled that out yet?

I have the same- was told in 2018 it was IC but not convinced. When they do a dipstick test in the surgery it always comes back clear but then they send it to the lab for further investigations and it comes back abnormal every single time. I’ve had 5 courses of antibiotics just since July but have moved on to some very strong herbal supplements to try and give my body a rest from the antibiotics.

They are called Uralix and have D-Mannose in them which is supposed to help rid the body of antibiotic resistant infections. I’ve only been taking them for 5 days so early days but will let you know if they work! Currently saving to see a private urologist specialising in chronic UTI’s as am desperate to get back to normal

This is the link for them if you want to research them bluegreenhealth.co.uk/uralix

I have suffered with similar symptoms for years - and as previous poster said, the tests used to detect infections often don't pick them up. Look up Prof James Malone-Lee - I saw him originally at his NHS clinic, think he now has private practice. He prescribed nirofurantoin, to be taken at first sign of infection - changed my life!

Thank you everyone for your kind words, I’m loosing the will to live with it, I can’t have sex with my husband as it causes me to have serious amounts of pain, like my urethra is on fire! I’m only 29 and feel like my life is over :( ive had endless 3 day courses of antibiotics there’s blood traces in my urine but apparently no uti.

Not sure that I can be of any help.
My very elderly mother had[I think] what you described in your op, for several weeks.
Seems to have gone away by itself now, but she has been left severly fatigued[3 weeks of only being up for about 4 hours each day].

She has been prone to getting utis over the last few years[she wasnt previously] but obviously she is way older than you are.

Shenormally goes to the doctor, but this time she said it felt different, as in not getting some of her normal symptoms, so she hasnt been.

Perhaps it is just "something going around"? As some things are apt to be?

Sorry I couldnt be more helpful, and partly just bumping for you.

I've also been living with this since April. Constant need to urinate.

My GP referred me to a urologist. Your GP should do this do.

OP have you managed to find any ease for your symptoms? I’m going through this at the moment - it’s very depressing. And the online embedded UTI forums are scary. I’d love some people to come on here who had difficult to find/get rid of UTI that did get better in a reasonable time span?

@summernotwinter unfortunately not. Still suffering with it! I’ve seen a urologist (nhs) who says it’s ic but I’m not convinced. I just feel really uncomfortable down there! I hope you feel better soon! Are you getting negative tests? X

@VioletRose91 yup. It’s miserable isn’t it. Trying not to feel ill have this forever! Did they offer you any pain support?

@OldWivesTale

There's a recent episode of Woman's Hour where they talk about cystitis tests being outdated and not fit for purpose. Just because you have a "negative" test doesn't mean you don't have an infection. Drs should treat symptoms. I would be asking for antibiotics.

This. I used to see Professor Malone Lee who's an expert in this area and am still a patient at the LUTS nhs clinic (ask for a referral). Prof says if you have UTI symptoms then you have a UTI, often embedded behind a biofilm. You need long term, probably high dose abx.

@CovidCorvid how are you doing now? And was this from one bout of cystitis or recurrent? This is my first infection for 12 years but is stubborn. The embedded aspect scares me - can it happen that fast?

Well recurrent....but Prof says generally they're not recurrent but it's one infection which never properly goes away. But sometimes the symptoms flare up more, and sometimes the bacteria is dampened down behind the biofilm and the symptoms are less noticeable.

I've been on abx probably 7 years now and I'm symptom free. However if I stop taking them they come back. I'm back at the hospital in Jan and they are talking about stopping treatment as not working - I'm on high dose abx. I know if they stop those the GP will prescribe me permanent low dose trimethropin which will mask the symptoms but not cure me.......I had hoped the high dose might cure me. It certainly does for some people. However they're also looking at starting me on vaginal oestrogen. I've also asked why I can't try a different abx so will push for that.

I say recurrent, I'm not sure to be honest. I was always prone to UTIs even as a teen. But I could be months or even years between bouts. Then I realised I had this horrible heavy feeling in my bladder and it's never gone away (apart from with drugs) but comes back when I stop them. So I suppose in a way it did come overnight.

@CovidCorvid I always used to have utis when I was younger, sometimes with little to no symptoms that was found by chance! Sometimes it feels like my bladder is going to fall out it’s so heavy