Horrendous bladder pain - no infection

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Hi!

I have recently been having problems with UTI type symptoms however after three courses of antibiotics and subsequent urine tests, there is no infection. This has been going on a few weeks however the past 6/7 days my symptoms are getting worse. I’m having constant urethral burning pain, the urge to urinate every 5 mins, and horrible constant ( actually constant ) lower abdominal pain and severe pressure, almost like I’ve a balloon or football in my abdomen. Bending down or forward causes alot of pressure and discomfort and some leakage.

The pain was so bad the other day my GP sent me to a&e where they again dipped urine, and did a very brief scan to check if i was retaining urine. This came back clear and my bladder was fully empty on the scan. The dr in a&e has referred me for a kidney ultrasound ( as i have a childhood diagnosis of one kidney being less developed ) next week.. however I certainly feel the issue is round the front in the bladder area. Speaking to my GP for an urgent urologist referral.

I just don’t know what is wrong with me, walking around is horrendous as I feel so tender and almost like I will wee all the time! The pressure is awful along with the constant cramps and stabbing urethra 😞 I have gone really downhill and i am frightened. Just to add, the urine dips showed traces of blood but only slight.

anyone out there who could advise me please? Anyone who has / had these symptoms?! I really am at a loss at what it could be 😫

thank you

Did they fill your bladder with water through a catheter and ask you when you felt the urge to wee? This with a scan while they do this can show how full the bladder is when you feel the urge to week.
i also had pain and thought I had utis. I took antibiotics but the dip tests were always negative.
It’s possible you have an overactive bladder. I think (from my experience) it’s also a perimenopause symptom.
A scan can also see if your bladder wall is inflamed or not. I was convinced i had an infection in the wall of my bladder. I didn’t. I had an overactive bladder.
I was given anti bladder spasm tablets which I took for three months. It retrained my bladder.
This wasn’t in the Uk. It was in Europe. But maybe worth asking about it?

How old are you? My perimenopausal oestrogen deficit caused exactly those symptoms.
If not perimenopausal, google interstitial cystitis.
Just a couple of suggestions.

Hi, thank you for the reply. No they didn’t do that they just asked me to empty my bladder right before the ultrasound, and then measured any urine left in my bladder to see if I was fully emptying it. It was fully empty. I think a urologist would be more thorough with any tests. Anti bladder spasm tablets - brilliant I will do my research, thank you!

I am 32, and this is something that crossed my mind. I had been having horrendous hot flushes leading up to this ( literally just pottering around the house would cause me to have the most overwhelmingly hot and clammy skin, but have been chalking it up to milder weather. Another thing too is my periods are not as long as they once where, and also very light… mentioned to dr but no more said about it. Maybe I could bring this up again.

Early menopause symptoms perhaps … Is 32 too young?!

I think it is rare, but possible, to have perimenopausal symptoms in your 30s. when you are in this much pain, everything should be considered.
The best person to see would be a urogynaecologist.
You could google your local nhs trust and see if there is one.

Absolutely. Thank you for your help I will do that now. 🙂

Interstitial cystitis

All the symptoms match up! Been reading about this, my god if it’s that then it’s all consuming 😱

I’m also due groin hernia repair surgery this weekend, only a minor op.. I’m wondering if my surgeon would still go ahead or if its even safe to do so with my bladder issues? With there being no infection etc however I will call the team tomorrow and see what they say. Waited so long for my op, too 😞

Thrush? It’s worth trying a pessary (not the pill you swallow, it does fuck all). If it’s not thrush the pessary won’t harm you, if it is then your problem might be fixed.

Does sound like early meno - the Daisy Network will have lots of info. If it is, HRT till you're 52 at least generally recommended to protect bones, heart, etc. Good luck!

I thought this too.

IC pr painful bladder is just a description of symptoms, there must be something causing the pain, likely an infection. The dipsticks and cultures are not reliable, this is even mentioned on the NHS website. You likely have an embedded infection, the three day course of antibiotics are not always a long enough course. I went through this a couple of years ago and it was difficult to get treatment but after a long term course of antibiotics I am symptom free. If you can't get antibiotics you could see if doctors will prescribe hiprex.

I had something similar years ago, my sample showed no infection but strands of bladder tissue. My investigations showed my bladder was shedding the lining much quicker than normal, leaving it raw & weeping, every time my kidneys sent any urine down, it was agony. I was going to the toilet every 10 minutes night & day, I was given medication to Soothe my bladder, painkillers & antibiotics, it lasted about 6 weeks before the pain started to ease. It was a viscious circle, the more I went to the toilet, the more I needed to drink which caused more toilet visits & more pain.

Perimenopause gave me similar symptoms. All started after a well meaning GP removed my oestrogen pessaries because he said you don't need both HRT and pessaries. How wrong he was.

It must have cost the NHS a lot of money for the subsequent investigations and tests, the constant back and forth to the GP. I didn't realise the two were linked until I saw the continence nurse at the hospital who asked for them to be reinstated urgently.

All my symptoms disappeared.

I think low oestrogen can make the tissue around the urethra shrink, causing an easy entrance for irritation.

That is exactly right. Elaine Miller gave an excellent talk on this topic. She is a women's pelvic floor specialist physio and an expert on all things bladder related. She is on you tube.

I remember trying to explain to my GP that in addition to the pain, burning and leaking, I felt as if I had an army of red ants running around inside my bladder.
Vagifem pessaries fixed it pretty quickly once I got seen by the right person after weeks and weeks of traipsing back and forward to the GP. (It cost me around £300 but was worth it).

I am afraid I can relate, I have had this problem for over a year now. Started with e.coli UTI, my first ever and have been in agony ever since. Dismissed from Urology with diagnosis of IC, no help given. Its soo bad.

I don't know what to suggest, I cannot get any help, just left to live out this pain forever🤐

@StanleyGoodspeed you can go to Prof Malone-Lees Harley Street clinic for treatment, they will look at fresh urine under a microscope and be able to see if you have white bloods cells and epithelial cells which indicate you still have a utility. Much more sensitive than an NHS dipstick or culture. Unfortunately it is private and they don't take health insurance. Some GPS will convert prescriptions to NHS depends on your GP. There is also the LUTS clinic at the Whittington which is NHS but I believe has a very long wait to be seen. I know some people have started at Harley Street and transferred to LUTs once their referral is top of the list. Both clinics follow the same protocols.

I am trying to get a sample tested by Focus Labs atm. I cannot travel to London I am in the North and its just too expensive to get there and stay in hotel, pay for treatment, etc.

I just wondered how people get hold of the long term courses of antibiotics and Hiprex if GP will not help. I only got given 3 day Nitro at the start

Hi, head over to Facebook and find the embedded/ chronic uti support group. I think you'll find a few answers

It is so difficult that the only place you can get treatment is in London, I really complained to my GP that is was ridiculous that I was having to spend so much money travelling and paying for private treatment, but they didn't care.
It was a pain to have to travel there but for me it was worth it. (I was lucky I only needed 9 months of treatment some people are much longer) Some of the appointments don't have to be face to face but I don't know how that works, I know do people travel from abroad to the clinic as they are so desperate for treatment and some of there appointments are over zoom.

God, that's depressing. Have to live with this forever FFS😥

I have Interstitial cystitis and have since I was about 16. I won't lie, if it's that then you will have bad flare ups that can last months, however I also now have times that I can go six months with no symptoms. Stress is my biggest trigger.

Might you have a bladder prolapse? Cystocele. I had a mild prolapse with similar symptoms and paid privately to have it repaired. Was fine for a month or so but exactly same symptoms as you are now back so I think the pesky bladder has found another weak spot to push into the vagina. I’m now waiting to see a urologist.
My symptoms are identical to yours, I’m already on the vagifem pessaries and sometimes can go for 4-6 weeks with.zero symptoms thee. Overnight they are back with a vengeance.
Im now not convinced that the prolapse was causing the discomfort and like you, think it might be the interstitial thing. Although I would describe it as extreme discomfort/ pressure than actual pain in my case.
It is completely debilitating isnt it? My whole day and night have to work/ not work around my bloody bladder. I can’t face the thought of this for the rest of my life. I’m 66 but before this started ( last September) was fully active, out dancing, walking, travelling, doing grandchild care etc.
I also find it difficult that most people don’t “ get it”. It’s not life threatening but my goodness me it’s completely life changing.
You are very young though, so once a cause if found I’m sure things will improve for you.