Recurrent cystitis

[greenshirt06]

I've just recovered from my yearly/ twice yearly bout of cystitis (with the help of Nitrofurantoin which I pay for from the pharmacy because the pain is often too much to wait for a GP's appointment).

Regular cystitis has been a thing for me since I first caught it at uni about 9-10 years ago. I take D mannose when I feel a twinge, but when I'm ultra-run down like this past weekend, it really needs antibiotics to nip it in the bud. Even after I've finished the "course" (2x a day for 3 days usually), it still doesn't feel fully gone if that makes sense??

I wee before/ after sex, I only wear cotton knickers, I don't wear tight clothes, I don't use any chemicals/ Femfresh etc.. I've recently joined a group on FB and am wondering if i have a chronic/ embedded UTI which only flares every so often when the bacteria sheds??

Does anyone else suffer from this/ can shed any light? I'm loathed to go to the GP and ask for a urologist referral, but I'd like to get it sorted before I have children in the next couple of years if poss as I feel that might make things even more angry down there!

Thanks in advance :)

sorry you are feeling poorly, UTI is horrible.

I take d-mannose every day, just one tablet before bed, and another if I start to get that feeling. I was constantly having antibiotics, and I never felt that the infection was clearing completely. Not had a UTI since being in the d-mannose.

I hope you feeling better soon, have you had a cystoscopy? Just to check your bladder out?

If you think you have an embedded uti, you need to go to Prof Malone's clinic in Harley Street or get a urologist to refer you to LUTS they are the only places in the UK set up to treat embedded uti's

I spent a decade suffering from really bad UTI’s. A nurse once questioned (in a waiting room) if the sample I had given was actually urine, as it was filled with so much blood.
The pattern tended to be once every 6-8 weeks and I needed antibiotics every time. Had lots of tests, camera work to check bladder etc. in the end what they did was stretch my urethra which has put an end to them.

how great is D mannose?! Usually clears it up for me too but sometimes just won’t touch it :(

how did you go about getting a cystoscopy? GP referral? Ironically I’m so worried about getting cystitis from having that procedure 😂 How did you find it? Was it helpful?

how great is D mannose?! Usually clears it up for me too but sometimes just won’t touch it :(

how did you go about getting a cystoscopy? GP referral? Ironically I’m so worried about getting cystitis from having that procedure 😂 How did you find it? Was it helpful?

@Stinkybrambles Ive heard about this but I’m not in constant daily pain etc like some of the poor girls in the group. Do you think it’s worth going down that route if it’s more of a “few times a year annoyance” type thing?

@PennySweetie you poor thing!! I’ve been questioned in the same way- cultures come back negative but my wee has been cranberry juice coloured 😅 Did you get your urethra done on the NHS? How did you go about exploring that as an option?

Yes.

Professor Malone Lee died early this year but his team carry on his work.

privately here

www.chronicutiinfo.com/treatment/conventional-medicine/uk-treatment/prof-malone-lee/

on the NHS at the Whittington Hospital Lower Urinary Tract clinic. You can’t be referred from a GP and you can’t self refer.

with either you have to be in London about every 6 weeks to give a urine sample.

This has saved my life.

Oh, I’m pretty sure Prof M-L says not to get a cystoscopy but I can’t remember where I read it.

Yes, urethra stretched on NHS.
I got fed up constantly having such bad UTI’s, they would stop me leaving the house when they happened, the antibiotics I had taken for years (they would give me a couple courses of antibiotics at a time as ‘standby’ because they were so frequent, which was great peace of mind in emergencies) didn’t seem to be having the same effect, so I was persistent with Dr and got referrals- I think I had camera work done first and when it showed the bladder etc as all clear and fine, the next suggestion was to have urethra stretched to see if it would improve things, and it worked.
anyone suffering from UTI’s has my full sympathy, it’s always at the back of your mind- what if I get one? etc- so glad the urethra seemed to fix it for me.

It was trimethoprim that best worked for me antibiotics wise, might be worth asking to change antibiotic in meantime

Ah OP - this is horrid for you! I used. Tk have recurring infections and urethral dilation was the only thing that worked for me. Used to wee clotted blood! Also had it done on Harley street with a Dr Badenoch. He was ace.

Hugs to you OP. I've been battling a bout of cystitis for weeks now. I've been taking D-Mannose and it's keeping it at bay. How often are you taking it? 4/5 times a day for an acute infection seems to be what's recommended.
Are you staying away from coffee and tea?

How old are you OP? For me, UTIs increased in my 40s, apparently it's one of the features of peri menopause and due to the drop in oestrogen.

@greenshirt06 d-mannose only works for e-coli infection, I think. I had cystoscopy via GP referral as blood found in samples, I was seen very quickly, at my local University hospital, they have a one stop clinic so they do every test on the day, went on a Saturday morning, blood again was found in the sample so for completeness they said cystoscopy was necessary to rule out bladder cancer. I have suffered with UTI for many years, seen quite a few Urologists both privately & NHS. I also have Multiple Sclerosis, my disability can effect bladder & bowel, so I think my GP was being cautious. The cystoscopy was fine having it done, urologist used local anaesthetic gel, but I was in pain afterwards for about 3 days. Thankfully my bladder was normal, no cancer found. Really important that you drop a sample into GP everytime you have infection so they can make sure you are on the right antibiotic. I found Trimethoprim the best. Good luck I hope you are better soon.

The bottom of your bladder is like a muddy puddle. If you don't really fill your bladder and then empty it properly, things get left behind in the puddle. If you're not suffering constantly, this could be a simple fix. Drink lots and lots and lots and when you pee, make sure you sit in different positions to empty fully. Leaning forward is a good one.

Of course, this doesn't work for everyone and it may seem too simple to be effective, but it's worth a shot, the minute you feel it starting. Think along the lines of needing your bladder full enough for a scan, it's almost painful.

This was told to me when I was suffering similarly and it has really helped. Hope it's as simple as that for you.

@MaffsMover his clinic does sound good and I see it mentioned everywhere. I'm not a chronic pain/ daily sufferer of it though so not sure I'm bad enough to go there yet without trying NHS first.. although I'm unsure.

@PennySweetie super interesting thanks- had my first episode when I was 5 and been on-off from 20-30 now so inclined to think it's not just sex-related and possibly a case of short urethra

@AreYouAFeminist you poor thing :( There isn't much that's worse than a long episode of it, sending lots of love. Yes only drinking water/squash atm have always been a big D mannose fan but sadly this last injection was too much for it.

@GreenFrogBlueFrog I'm 30 now but was on the mini pill for about 8-10 years (came off when I was 28/29). My cycles seem fairly normal but maybe there's an oestrogen imbalance, who knows. Food for thought, thankyou.

@JuneOsborne That's super interesting- I'm not the best at drinking & WFH next to a loo so probably never have a totally full bladder. Definitely will give that a shot!

Good advice @JuneOsborne , I lean forward as well and I find it gets every last drop out. I think it helps.

Another thing I was reading about was probiotics, apparently if the pH balance of your vagina is off, you're more susceptible to UTIs. Taking probiotics orally isn't supposed to do much good because they get killed by the acids in your stomach/intestines but actually applying live yoghurt to your bits is supposed to help. I bought live organic yoghurt with this in mind, but I haven't been brave enough to do it yet!

Keep me posted on this! I've heard about probiotics but always (possibly wrongly) assumed they only applied to people who get BV/ thrush etc as well as cystitis? I've never had BV or thrush in my life and everything seems v "normal" down there, but I'm intrigued to know how you get on!

As we are made differently down below, the bottle wash worked for me. Basically wash after every poo or wee. Urinatining after sex, ottoman pants etc also.