Handhold - bladder/urethra issues

[pickledwillies]

I hope this won't come across melodramatic but it's genuinely taken over my life since the beginning of Feb. I can't eat or sleep and struggling to concentrate at work. Starting to have scary intrusive thoughts. I have a chronic health condition so dealing with further unrelated health issues has just put me over the edge.

I had an uncomplicated UTI in early Feb which was treated with multiple rounds of antibiotics. It does seem like it's cleared but I'm left with this burning urethral pain which is worse after urinating (and also passing stool, somehow). I'm trying to get medical help but I've already seen a urogynaecologist who didn't really take me seriously and just said it's inflammation and will pass. But it's not getting any better. I also feel like I have to strain to get the last bits of pee put. I'm still on antibiotics as the last doctor I saw prescribed a month's course just in case but it's not helping and I don't actually think it's an infection anymore.

I'm taking hiprex, d mannose, cranberry, drinking tons of water, etc. I've had my urine cultured and it's clear. Tested negative for STDs in6llw cluding ureaplasma and mycoplasma. Had a clear smear test.

Currently looking into pelvic floor dysfunction and low Oestrogen (but I'm only 32 and never had children or been on hormonal contraceptives).

I'm trying to find a good, preferably female gynaecologist who will take me seriously and be able to help. I'm in London and have accepted I'll likely have to pay privately. Does anyone have any suggestions?

The burning urethra pain is driving me nuts and I'm so so scared it won't ever go.

Any experiences, advice, suggestions welcome. I feel so desperate. Couldn't even get out of bed today.

The exercises are basically to relax your fanny so they’re not strenuous. I find them harder on my brain than my body! Hopefully your physio is a pelvic specialist - is their name on the POGP website?

@Porridgeislife Thank you! Yes, managed to find someone literally a 10-minute walk from me who's also listed on the POGP website as an affiliate member! Very lucky. Hoping for good results, though a bit nervous about bearing my vag to yet ANOTHER person haha.

Oh and one more question - has anyone bought/used one of those TheraWand things? Essentially massagers you can use at home to replicate the internal work

I would potentially look at trying to see Dr Raj based a Portland. She is a chronic uti specialist but is also a gynaecologist. So should be able to look holistically at the problems you are describing.

Also - does a PFTP do a rectal exam too? 😫

For relief from urethral burning, try soaking in a warm bath with a cup of bicarb soda (from the baking section in the supermarket) added, and also try drinking a glass of water with a teaspoon of Eno (also has bicarb in it) added to it. I have found that really helps.

The more you panic it will never end, the more inflamed your nervous system gets.

Hi. AZO is good for painful urination. Turns your wee orange so a bit alarming. Also try the Urokey test from Regenerus Labs. They test for thousands of bacteria unlike the standard NHS testing which hasn’t changed since the 1950s. They have their own affiliated pharmacist who will call you to discuss findings and prescribe what antibiotics are needed. If you were older I’d say lack of estrogen causing the problem (which it still could be I guess 🤷‍♀️) which is easily sorted with topical HRT cream. Honestly, it’s given me my life back x

The more you panic it will never end, the more inflamed your nervous system gets.

Very true. Today is Day 2 of taking antihistamines and I'm far more comfortable, and I've been able to forget about my bladder for a while. And I'm sure that forgetting about it helps quite a bit. Today I've realised that my hair colour isn't working (but this is a better problem to have)!

@Springtime43 Glad you're feeling a little better! Ngl, Easter weekend was terrible and I just kept crying in private despite having to be happy as was celebrating my DB's and DSIL's almost-here new baby. Trying not to overly fixate on it but it's hard, but hopefully appointment later with the new female urologist and PFT on Friday should help...

That's interesting about the antihistamines. I actually already take famotidine and ketotifen (both prescription-only) for an unrelated condition, but I wonder whether I should try the one you tried...

@pickledwillies Well my bladder was definitely feeling irritated, and antihistamines are generally good for irritation, and had been suggested earlier in the thread. I thought there was no harm in giving it a try.

Yes it completely resolved for me! I was terrified reading all the embedded UTI stories but with a weeks worth of the correct antibiotics I was better! Sending you hugs, I know it can be draining.

Hello! Me again (the OP). Thought I'd update. So I saw that urologist, who did the bladder/transvaginal ultrasound, a uroflowmetry(?) test (you pee into a weird toilet and they measure the speed), and bloods and urine tests. All normal, but she said the uroflowmetry indicated I was stopping and starting and this could be because of a hypertonic sphincter or something? She may refer for more tests (video urodynamic studies) but said she wants me to try pelvic floor physio first and thinks this could help, which I'm doing later this week.

In terms of my symptoms, it's been up and down. I had 2 weeks of basically zero symptoms, but they're now back, with some lower abdominal pain too (bladder ache?) and a weird sensation, like a brain signal of needing to go but knowing my bladder is empty. Hoping the physio helps. Just so sick of it all...was feeling optimistic yesterday, esp since my symptoms virtually disappeared for 2 weeks, but having a really down day today!

Will update :)

Has anyone have this symptom for? I've done some research but can't find something that fits exactly. It's sort of like an urge to urinate, but I can tell my bladder is empty - it feels like a false signal. It's not pressure exactly, or even a feeling of incomplete emptying. Just feels like a false alarm? I dunno if it's psychological but I don't think so?

I should probably stop fixating on it and just focus on PT but it's so hard :(

Have you had pelvic floor physio? Amazing stuff. Wish it had existed in my day. Everyone goes on about strengthening your pelvic floor but some women have an over tense floor and should do the opposite exercises.
If your pelvic floor is tight and tense the signals to your bladder are the same as if the bladder is full I think. Do try it

www.thepelvicstudio.com/blog/the-almighty-pelvic-floor-part-one-over-active-bladder

Hello - yes I have! I have just PM’d you

It's called interstitial cystitis and it has been cured for many by giving up gluten.

If you're still taking d-mannose alongside antibiotics, you should stop - I've been told by my doc that they don't work together well. I have frequent UTIs (still not got to the bottom of why!), and they were very firm about this. Just started doing more intensive pelvic floor exercises, so hoping these will help with leakage too. Best of luck with your treatment!

Hi all! So I had another GP appointment today since symptoms haven't fully resolved (had this apptmt for a separate issue anyway which resolved so thought I'd bring up my bladder problem again).

She took a sample and did a dipstick and said "hmm no real signs of infection, only 1 infection cell...but i'll send it off to be cultured to check just in case". Wasn't given antibiotics.

I also noticed my urine had tiny white specks in it,,which I've noticed before too. Is this normal? I'm a bit confused by this and her comment.

Hi. I’ve read about white specks in urine before and I think it’s the bladder lining shedding? To sort of get rid of any infection

I’ve read that the bladder wall sheds its lining every so often (not sure how often), similar to the womb I suppose. Hence the white spots. I suffer from irritable bladder syndrome too and it is dominating my life. For instance I swim regularly, go to the loo before the swim, then have to get out after half an hour because of bladder pain to do another wee, get dressed and do yet another wee before I go home! I would easily swim for another half an hour were it not for this. The pain is stinging and not like the ordinary feeling you get when needing the loo with a healthy bladder.

The uti tests done by the nhs are useless. In your shoes I'd pay for a focus laboratories test or microgen but-the latter is more expensive. You can purchase/order these yourself. NHS doesn't test the urine for long enough, these tests will also test against antibiotics in the lab to tell you which should work if you do have bacteria.

I also saw Malone Lee and had the same scepticism as you re wbc tests. Focus and microgen are different and will tell you if and whether bacteria arecpresent. I see Mr Malde privately (he also does nhs) Those who really understand about embedded infection/CUTI other than Malone Lee's clinic use these tests. You need to test when symptomatic and come off treatment for a few days, but then if it comes back negative it's a good indicator you're dealing with something else - pelvic floor, inflammation, etc

Another area to be really mindful of is the bowel. Regular movements, probiotics, making sure there's no constipation or straining. How happy your bowel/gut is has an impact on your bladder in numerous ways.

If it is an embedded infection the hiprex you are on should deal with it but it takes time.

OP how are you getting on now some time has past? I have been having the same issues since having a UTI 6 weeks ago!

You sound exactly like I was in 2019. I had a uti from hell that wouldn't go away, but all my Gps dip sticks kept coming back clear. I was reffered to urology who stuck a camera in my bladder, said the walls of my bladder was irritated and I had painful bladder syndrome. Said If I wanted to have sex use numbing gel and to avoid caffeine ect. I got so depressed I didn't want to carry on, sometimes id wee blood, my urethra would bleed, i felt like there was something trapped in there and omg it burnt. Last year my nhs gyne reffered me to the luts clinic at the Whittington in London after expressing how depressed i was and how urology had tryed to send me to phycosexual councilling. I have endometriosis but this was pushing me over the edge!! At the Whittington they tested my urine then and there under microscope and found I did infact have a infection. I've now been on antibiotics for 12 months because the infection is so embedded but I finally have some of my life back.

There's a clinic in London who check for embedded utis (privately) it might be worth looking into it and getting a consultation.

Alot of women go to the portland or no10 harley street.

You can get reffered to the luts clinic at the Whittington but it must be via a nhs consultant so is abit of a faf!

I promise ur not alone with it, its a horrible thing to endure, and the medical gaslighting is insane x