UTI type pain but no infection is ruining my life

[AmberWriter]

Hi I'm desperately looking for some sort of advice as I'm literally loosing my mind. I'm 32 and two years ago I had surgery to remove one of my ovaries. I woke up with a catheter in and was in extreme pain even after it was removed. I had urethral and bladder pain for 5 months afterwards. Had an MRI which showed no damage from the catheter and eventually woke up one day and the pain was gone. Fast forward to a year and a half later and after a period of high stress and meeting a new partner and having sex for the first time in a while I started to get UTI symptoms. I got 3 days of antibiotics but still didn't feel better. My urine tests have all came back negative but unfortunately the pain I'm in is so extreme I'm off work and in bed most of the day. I've been to a and e, my GP 6 times and also paid privately to see a urogynecologist yesterday. She examined me and seen no problems and no pelvic floor issues and suggested I start d mannose and see how I get on. The problem is the pain is so bad I don't know what to do. It comes in waves throughout the day and really worsens after I pee. I'm still peeing the same number of times as usual. I'm having severe bladder pain, urethral pain and inner vaginal pain. The pain also travels down my thighs and inside my inner legs. All I've been given is naproxen and co codamol but after 4 weeks of this hell I'm just looking to see if anyone has suffered anything similar and has any advice or tips to help cope with whatever this is as it's destroying my life
Thanks

Sounds awful. Have you had a cystoscopy, where they examine you via a tiny camera in your urethra? If not I’d push for that. I had one after recurrent uti (which didn’t always show in GP urine test) and the urologist then gave me a longer course of different antibiotics and been fine since.

You need longer antibiotics. Some people have to take prophylactic antibiotics before sex.

I was on antibiotics non stop for around 10 years due to a chronic infection, I got referred to the LUTS clinic in London which is the best in the country. It's NHS. If you can't get referred but can pay privately then Dr Malone Lee in Harley St is who you need.

Have they suggested local oestrogen? Could the removal of your ovary mean that you are low on oestrogen? That could be causing bladder and urethral pain and inflammation.

I’m sorry this is going to be bullet points as just about to put Ds to bed -

You need a cystoscopy.
If this confirms inflammation it may be interstitial cystitis.
I’ve had this since 14- I’m now 43. I’ve been on daily long term antibiotics since 14, but the last 2 years been able to come off them after going on to amitriptyline and Ovestin oestrogen cream used 3 times a week.
Even if you aren’t menopausal the Ovestin may make a huge difference.

Look at interstitial cystitis aka painful bladder syndrome OP. There are lots of causes.

I took elmiron which was amazing but has now been linked to retinal damage. amitriptyline was also suggested to me. Diet can make a huge difference (I can’t drink alcohol at all when in a flare). Food sets some people off. Sex is a huge factor for many, me included. I can’t cope with new partners. Fine now with the more frequent sex with my DH not with the honeymoon a few times a day sex!

I also spent a year on a daily antibiotic as sometimes it caused by an embedded infection. That worked for one flare but not a subsequent one.

Interstitial cystitis or pudendal neuralgia

www.nhs.uk/conditions/pudendal-neuralgia/

Have a read about interstitial cystitis, my sister was plagued for years by it, but there are promising therapeutic long term antibiotic treatments

I had a very similar issue, my urethra, bladder, vag just really hurt, particularly after a wee and with a full bladder. It was awful and it lasted nearly a year, I'm not lying when I said I said would literally wake up and cry in pain, my legs would also have shooting pains too.
I'm 38 so slightly older than you.

As a last resort before another referral my GP prescribed vegifem pessarys but also a friend recommended trying fluconazole (for thrush) despite not showing symptoms, i bought online as was desperate and it worked after two doses, not sure if the vagifem helped or not.

Also did coincide with the end of a very stressful year so not sure if that played a part too. It's been nearly 5 months now and symptoms have not returned. Sympathies it was horrible and I really hope you get sorted asap.

Sorry no idea where vag came from at the start there! it was all bladder and urethra pain

The problem is that urine tests are hopeless and only pick up bacteria in about 50 per cent of cases.
there is DNA sequencing you can do which is supposed to be more accurate. Not sure if this an option for you.
I have suffered with this for 4 years (with periods of remission on and off).
things that help:
low dose antibiotic for 3 months
no caffeine
no alcohol
limit processed foods
ovestin cream
anti histamine daily at night
2.5 litre of water a day
uralix (this is a product designed to support urinary tract health - its expensive but it did seem to help my symptoms get under control.)
i was clear for a few months and then had sex again and within 2 weeks my symptoms were back.
I know what you are going through - it’s v v tough.

Sometimes UTIs are not detected by dip test or even culture, so negative urine tests do not necessarily mean that you do not have a UTI. Most GPs and non-specialists do not know this. Your urine needs to be examined to see if there are signs of infection (white blood cells and urothelial cells). This has to be done with fresh urine at one of the very few specialist clinics in the UK: LUTS, the late Prof Malone Lee's clinic at 10 Harley St, and there is one at the Portland Hospital as well. (the latter two are private and you don't need a referral).

A cytoscopy is not recommended for a suspected UTI - it is invasive and can make your symptoms much worse. Please have your urine looked at first and further examinations can be done if necessary.

i am a patient of the Malone Lee clinic,and I can truthfully say that I have got my life back after years of chronic UTI that didn't show up on the standard tests. If you don't have a UTI they will tell you and you can explore other causes.

I agree about avoiding cystoscopy, Prof Malone Lee who was the expert in this always said never have one. Can make it worse.

If I hadn’t had one I wouldn’t have been able to come off the daily antibiotics I’d been on for 30 years as it showed very clearly I had physical inflammation in my bladder which they could diagnose as interstitial cystitis- and it also helped towards my diagnosis of lupus. I agree that people should make sure they don’t have an embedded UTI before having one - it’s not the most fun I’ve ever had and yes I did suffer very badly with UTI symptoms for a week or so afterwards but I’m glad I had it done. My years of antibiotics have left me with invasive Candida - whole body, oral etc- which is very hard to treat now. I’m under 3 specialists just for that and I’m almost permanent Fluconazole. When it’s flaring I can’t even eat solid foods. So I’m very wary of people being given long antibiotics unless they’re absolutely needed - if I’d had an earlier cystoscopy and been switched to meds for IC earlier (there are many) I may have avoided many of the issues I now have.

I guess maybe Prof was confident I had an embedded UTI as at LUTS they look at fresh samples under a microscope so think he could tell from white cells, epithelial cells, etc.

And I'm sorry you've been left with so many effects after the antibiotics @Pigeonqueen . I think I was very lucky in that respect.