UTI symptoms but no infection - need urologist recommendations

[torgirl]

For about 18 months I've had pelvic pain that flares up for about a month now and then. Just had another flare up but has also bought a constant need to urinate with it. It's constant and driving me crazy. I doubt it's an infection as have been tested for one each time the pain flares up but always clear. But obviously will double check with GP as soon as I can. They do suspect possible endometriosis and am on the waiting list for a lap but told it could be up to two years wait.

Something is going on down below and I've tried to be patient but this constant need to pee is genuinely ruining my life, everything has just stopped and it's made me incredibly anxious.

I'm broke but cannot wait to see a urologist on the NHS as know it will take months (possibly longer). Does anyone have any recommendations of a really great private urologist I can see? Happy to travel. I know James Malone Lee's clinic was meant to be amazing but sadly he passed away and the clinic has shut down.

Thanks for any help

Prof malone lees old nhs clinic still runs at the Whittington, it’s called LUTS clinic. I think his son still has a practice on Harley street.

also have you actually seen a gynaecologist yet and have they said they’d do a lap for endo? Because Dd was told by the nhs consultant recently they no longer do laps/surgery, hormonal treatment first. If you respond to that then it’s endo. So they don’t go looking for it and try not to treat it surgically 🤷‍♀️

www.whittington.nhs.uk/default.asp?c=42456

You may have painful bladder syndrome - often referred to as IC.

I was recently diagnosed with this after being on daily long term antibiotics since I was 14. I’m now 42 and found the issues were getting worse and worse recently - I am menopausal and have HRT and internal oestrogen (something else to google, op) which has helped but hasn’t solved it. I saw a urologist in the nhs and had a cystoscopy and they took biopsies and they found areas of inflammation. They’ve put me on amitriptyline (I can take up to 50mg at night) it works like a nerve pain blocker, Tramadol and solfiencin (sorry I probably haven’t spelt that right and can’t be arsed to google it). There are other treatments they can try long term - I am waiting for a follow up appointment.

I know that doesn’t really answer your question about recommendations for a specialist but I wanted to share my experiences so you can see what might happen / what might be recommended.

They are trying to wean me off the cefalexin 500mg I used to take nightly as I don’t actually have an infection I just feel like I do.

I think it goes hand in hand with my other autoimmune issues - Addisons, lupus, pituitary issues etc etc. Lots of stuff!

www.nhs.uk/conditions/interstitial-cystitis/#overview

I have had very similar symptoms and was lucky enough to be able to refer privately to a gynaecologist. He diagnosed me with IC as above and despite huge scepticism on my part about this (I was so sure it was a 'real' infection) he prescribed the instillations.
I think I had six or seven in total but they worked quickly. They heal the bladder lining to prevent the irritation.
That was seven years ago now and I've not had a reoccurrence. It started with a horrendous bladder infection that needed all sorts of different antibiotics for, which is what he thought started it all off.

I did feel like I was going crazy for a while as they just couldn't find any infection when I kept going to the GP despite there being a high level of WBC. I am so so grateful to that gynae - if you are in Hampshire I'm happy to make a recommendation

It’s so annoying because Prof Malone always said if you have uti symptoms then you have a uti. That lab tests miss 80% of infections. I’ve been on cephalexin daily for about 8 years now. I’m not cured but the good thing is I have no symptoms when I’m taking it. If I stop then within a couple of weeks it’s all flared up again. So I keep taking it. Prof was very disparaging about instills and IC but maybe he was wrong. 🤷🏻‍♀️

Oh sorry - re read your post! You are looking for recommendations - I saw Mr Christian Phillips out of the Hampshire clinic, although I think he also worked out of the Candover clinic in Basingstoke

See this is what I was always told as well but I’m not sure anymore. After 30 ish years of daily cefalexin it’s given me other issues - I’ve had all my good bacteria basically completely destroyed and I have now been placed under an oral specialist for recurrent oesophageal and oral thrush which they suspect has stemmed from my prolonged antibiotic use. They have me on Daktarin oral gel every night and various other treatments and they recommended Biokault capsules which I’ve been taking daily since trying to wean off the cefalexin now and it’s definitely helped. I have to admit I still feel a bit unsure about it all because in my head I feel like I “must” have an infection and therefore need the cefalexin but actually the pain does seem to be subsiding with the other things I’ve been prescribed. Very difficult all of it.

I know my treatment plan differed from both of yours but I absolutely get that feeling of honking that I must have an infection because all the symptoms were there.
They ruled out other issues with quite a lot of tests before the instillations - @oP have you had any tests done? I know I had a cystoscopy and a urodynamics test and an ultrasound of the kidneys but I can't recall what else was needed.

Thanks for all your comments and help. It's a stressful time but am hoping I'll find a solution soon

It's a bit of a stab in the dark but I had similar and started on these and crossed fingers it's really helped. I also get ovary cysts which seem to cause the flares sometimes

Pro-Cyan Advanced Multi-Action Bacterial Formulation Targeting Urinary Tract with Cranberry Extract and Vitamin A – Pack of 45 Capsules amzn.eu/d/7j0PgAY

Same as Xrays above-I've been on Solifenicin from the Consultant as up to now it looks like I have a bladder that is spasming. (Hadn't heard of this before). This was after several urine samples with no infection done by GP. Have had to wait over a year for the 3 month follow up with Consultant due to the NHS backlogs. He said there were several meds to try. Was booked in for an exploratory op with him but on the day he cancelled as I'd improved with the Solifenicin. I still haven't got a 'normal' bladder and have odd days it's very painful. I also take Tramadol ad-hoc for bad back but it completely blocks the bladder pain for the day - that's 1 x 50mg tablet.

You’ll get seen in 2 weeks 3 weeks via nhs . Just get the referral

Thanks for your help everyone. A quick update, I was put on amitriptyline last year and it's kept my symptoms under control and it's back to a normal life now. They couldn't find a cause through all the tests I had so they presume it's down to inflammation from my endometriosis.

Is that a antidepressant?

What’s tests did u get done for them to say it’s all clear and it’s endo?

In high doses it can be used as an antidepressant however in low doses it's a very effective painkiller and relaxant. Like an antidepressant it can take several weeks for it to start being effective but it's been a life saver for me. Only side effect was tiredness but that wore off after a couple of weeks.

I had cytoscopy, MRI and ultrasound as well as many blood tests and urine tests. I went to a private clinic in London which was excellent. However got most of the tests on the NHS which helped a lot with the cost. Nothing was found and as I already have a diagnosis of endomitrosis and painful bladder is sadly common for endo sufferers they put it down to that and decided to just try and manage the symptoms. They think it's most likely to do with the general inflammation in that area but like most endo symptoms it's badly under researched.

Hey Zaffa, I am in a similar situation and am from Hampshire. I was wondering if I could ask you some questions. I have message you privately if that's okay!