UTI despair

[Newnewnewnewnre]

Posting here for traffic.

Chronic UTI since January this year.

Under the care of the Malone Lee team at Harley Street. Taking trimethoprim (only one I can take) and hyprex. So receiving the best of care. I was told it was a slow treatment. I haven't got the time.

I cannot take it. The urgency has got worse and worse. Through the day and night. It's like water torture. My mental health is as bad as it could be because I am sleepless, agitated and despairing. It's really hard to write this and string sentences together.

I have children and I'm not involved in their lives properly at all. Just living minute to minute. I can't deal with it the constant urgency. I'm mostly in tears. I hoped it was just a flare up that would ease but instead it's got worse over a period of a month.

Has this happened to anyone else. Did you survive it.

bless you.

I have a hobby as a nutritional therapist (i am qualified) and have helped a few people here including my mum who was in a bad way with it

you need to get to the root cause of the issue.

However you might need some antibiotics to clear the infection initially - can you try any others? Irrespective you need to look at your gut health and immune function. I don’t want to say the supplements I recommend as it’s highly individual but suggest you look for a decent qualified nutritional therapist who can help.

you absolutely can get on top of this but will have to make a number of changes

I confess not to reading the entire thread - sending genuine sympathy to everyone suffering, I had a cystoscopy cancelled because I had an infection they said there was a risk of spreading it.

Hard to remember exact age but roughly late 40s very early 50s.
But that doesn't mean to say you are to young. My Dr seemed to think mine were reoccurring due to lack of estrogen, getting dry/sore then infection setting in.
I also use YES vaginal products, after all you moisturise you skin on the outside to prevent dryness.
Just don't slap loads on.

I'm 59 now.

Interstitial Cystitis often goes hand in hand with other conditions such as Endometriosis, has that been ruled out? I have Endo and my bladder flares up from time to time but my dipsticks are always clear.

Try a Tens machine.

I think the medical community is slowing coming round to the idea that most people who have an IC diagnosis probably have and embedded bladder wall infection. It's very rarely just an inflammatory condition.

cutic.co.uk/what-is-chronic-uti/

Yes, this. I just don't buy the whole IC thing. They tried to tell me my first really bad infection was IC because all the swabs they did came back negative. Eventually after months of trial and error I found the right antibiotics and the relief was immediate. If I'd have just listened to that Dr then I'd have given up. I firmly believe that the symptoms are caused by infection - it's just bloody hard trying to find a way to get rid of the infection. I think I've had an underlying one for 35 years and it flares up about once a year. But that's mainly because I rarely have intercourse now because it's not worth the flare ups after. So I think that IC is just an umbrella term, like IBS, which means, we know what your symptoms are but we don't know what's causing it; it's lazy and women deserve better than this. It affects so many of us.

The dipsticks are not fit for purpose and the culture growths are not much better. If the infection is embedded then they will often not show up at all with standard testing.

@OldWivesTale this is really interesting about the culture tests as mine initially came back with infection. But the last two samples I’ve given haven’t shown anything on the dipstick or grown cultures.

They were therefore reluctant to prescribe anything as ‘there was nothing to treat’. I was quite insistent.

Im due to have a cystoscopy (spelling!) in the next week and really hoping they can get to the bottom of it all.

At 41 and having just had my second, can’t imagine hrt would help as I don’t appear to be perimenopausal

OP, how are you doing this morning?

How old are you Op, as vaginal atrophy can manifest itself in urgency and mimic uti.

I've had a better afternoon and not feeling desperate at the moment, thank you

I'm 42. The UTIs began after having sex (something I feel will never happen again).

I need to try the topical HRT cream just in case perimenopause is an issue but I'm terrified it might cause endometrial cysts to get larger. I can't have them operated on due to a damaged pelvis and they're small at the moment.

Apparently the life cycle of a UTI 'cell' is 3-6 months so if they're embedded, the urine can be clear but eventually the infection will recur when the cells break away from the bladder lining. That's my understanding. This doesn't seem to be the way that the NHS sees it but there has been some movement on that recently.

The hardest part is waking after four hours sleep for weeks on end. It's tough to think of that going on long term.

This thread has given me ideas of treatments I could try. I haven't been taking the hyprex at full dose which may really help. Malone Lee believe it's a game changer - basically bleach for the bladder - and a chemist can prescribe it.

I was so desperate yesterday. Thank you all for giving hope. I'll follow up on anything I can that's been suggested. Installations take a bit of nerve!

*I'm 42. The UTIs began after having sex (something I feel will never happen again).

I need to try the topical HRT cream just in case perimenopause is an issue but I'm terrified it might cause endometrial cysts to get larger. I can't have them operated on due to a damaged pelvis and they're small at the moment.*

I to used to get an infection after sex...a distant memory now.
One Dr called it honeymoon cystitis...another said it was caused by bruising.
I use Estroil cream externally, did try using it internally but Vagifem was easier.
Using both and It really has helped with the bladder area.
Have a chat with your GP, hopefully they're up on all things menopause some really aren't but it's big in the media right now and being spoken about a bit more.

Op, I think you have atrophy not a uti. I think if you started on vagifem and ovestin your 'uti' would disappear. I had the same at your age and was treated for over a year for a 'uti' that never was. I was dancing on the spot with urgency, running to the toilet repeatedly and had to get there within seconds. Give the vaginal estrogen a try and you might find everything clears up, though it can take a while to settle.

I've just hopped on here to share my misery and commiserate with other sufferers.

I'm in agony at the moment as my bladder isn't opening properly which has been confirmed by the hospital. The hospital are reluctant to treat me at the moment because I'm 7 months pregnant.

I've previously had surgery to dilate my narrow urethra but I'm being told there is little that can be done other than take paracetamol and buscopan. Has anyone else had this during pregnancy and can offer advice on what I should ask for?

At the moment I can't sleep because it's a million times worse at nighttime.

I would suggest seeing a womens’ health physio.

Oh turquoise. That sounds horrendous. I wish I could help but I'm in the dark myself. Maybe if you start a thread you'd get more tailored responses? Really hope you get some help.

Sorry I haven’t read the thread but even for other people with less resistant UTI/cystitis make sure you take pain relief. I do get them fairly regularly and one day had to take analgesia for a neck pain (just paracetamol and ibuprofen) and the relief from the UTI/cystitis was unreal. Might not work for everyone but it was a revelation and something I’d never really thought of. Just waited for the horrid, sicky, need to wee but don’t sensation to build up every 20 minutes. Honestly for me it was a revelation! Hope you feel better soon.

@TurquoiseDreamCatcher that sounds awful, can you agree with your midwife to take paracetamol every 4 hours to try and get on top of the pain? You might already be doing that hope you feel better soon x

I had an infection which turned into interstitial cystitis which was agonising for years. I still had to go to work and would rock back and forth in the bathroom every lunch break wishing I could die.
Then I refused to have sex with my totally unsympathetic husband and it cleared up almost overnight.

Exactly this happened to me - a UTI that cleared up but symptoms did not. Pelvic floor physio plus topical oestrogen ('as you are reaching that age, you know...') did wonders.

OP excuse my asking but is it only pain inside your bladder area constant rush/urge to pee, or are you sore/burning around the vaginal/vulva/outside area and feeling like you're peeing out glass shards?
I ask as this was one of my main factors caused by the lack of estrogen and the combination of the two meds I use helped enormously.
I lie not when I say there was a time I'd be laying in bed in the dead of night crying and wishing the world would end and take away the constant burning feeling.

Hi, there is another way of treating this that Malone Lee doesn't believe in but is being used a lot with success in The States and small number of urologists are now using here. It's antibiotic instillations straight into the bladder. Check out the antibiotic instillation treatment for embedded/chronic uti Facebook group. It's particularly helpful for people who struggle with oral antibiotics. If administered directly into the bladder it avoids a lot of the side effect problems. Many of the people who can't tolerate the HS clinic treatment due to not tolerating oral antibiotics are on that group.

traveling Thank you, I actually had a telephone consultation with the consultant who does the installations for a second opinion. He said the trimethoprim just needs more time to work and if I can tolerate it then he wouldn't want to change anything yet. I asked if it would speed things up to take oral antibiotics and do installations but he said no because the life cycle of the bacteria is what it is. My husband would like me to switch to the installations (just to try something different I think) but the consultant said they're not better, just different.

Crumple That sounds awful, I'm so glad you got it sorted. I don't have that glass shards feeling at all xx

@Newnewnewnewnre - how are you now? It would be really interesting for other sufferers to know how you got on. I really hope you are doing better now xxxxxx

has anyone else had a similar experience its so had cutting out all the sugar.
Did some people find that even a reduction help.