Recurrent UTI making my life a misery

[QueenElsie]

Hello

I have suffered with UTI's for the past 10 years. I have previously managed them with the usual methods - cranberry tablets, cystitis sachets, drinking a litre of water an hour etc etc. This usually held them off - in very bad cases I used to go to the doctors for antibiotics (usually Trimethoprim) which I would take for 3 days and it would clear up.

This year they have ramped up considerably. I have had at least one a month, to the point where they are excruciating - I am glued to the loo as even laying/sitting in bed is agony. My work is massively affected. I haven't had sex or drunk alcohol in months.

I have had at least 6 courses of antibiotics this year, which always clears it up - but it comes back with a vengeance very quickly.

I have now been to the GP to say that this cannot continue - surely I cannot KEEP taking antibiotics as sooner or later they aren't going to work anymore.

He sent me for blood tests last Wednesday which have all come back normal. He refuses to refer me to a Urologist, saying that he cannot do it unless he has a urine sample that is infected and refuses to give me any more antibiotics.

I am going on holiday next week and I am genuinely terrified I am going to get an attack.

Where can I go from here?

Note to add: I take cranberry tablets every morning, I also take 2 x Waterfall D Mannose tablets every evening. I wipe front to back and always make sure I shower with non-perfumed simple soap after a number 2. I don't have sex/drink alcohol anymore due to this being a known trigger so as you can imagine it's affecting my relationship hugely (although my partner is extremely understanding). My cleanliness is literally through the roof as I am so petrified of an attack.

Anyone with any experience I would be so happy to hear from you!

Can you see a different GP? This is ruining your life and you don’t have to live with it. You can be put on a long course of antibiotics to kill off the bacteria, for starters. I’d try for a different doctor and be clear about the effect it’s having on your sex life etc.

What is your diet like? Refined sugars are best avoided.

Can I ask how old you are? I kept getting these and being given antibiotics that didn't work until a new GP did further tests and they weren't UTI's at all...

I was given pessaries called Vagifem as I was lacking oestrogen but I am 46 and perimenopausal! they work a treat though 😀 No symptoms since..

I can sympathise with you. I am in almost the same situation. But have been referred for a scan on my tummy. A urodynamics test and a cystoscopy.
One thing I can suggest is that you buy online some urine testing sticks. They will show if you have blood, leucocytes, protein,or nitrates, any of which can indicate an infection. They are just like the ones at the Drs.
Use a jug to wee in, dip the stick in and wait one to two minutes, the ones I use take 2 minutes for leucocytes and one minute for the others.
You can obtain from the Drs. some of the red topped bottles which they use to send samples off to the lab for culture. These bottles have preservative in them. Usually on reception. If you think you have an infection contact your GP and ask them to do the necessary form and send it off. I do appreciate getting in touch with them can be difficult.
The best time is first thing in the morning, when your urine has been in your bladder for longer. I buy them from a company called Medisupplies The sticks are called Insight 8. If you just google urine testing sticks it brings up Medisupplies and you can take it from there.
I hope this helps, but I think you also need to see a different GP.
Good Luck x

You have my sympathy I have suffered with reoccurring uti's in the past. I too started taking waterfall manrose tablets which helped a lot. The one thing I had to cut completely was coffee / tea / fizzy drinks / and artificial sweeteners.
I was referred for a bladder ultrasound but this came back fine. Reading between the lines I think several bad infections irritated the bladder lining. This then set off bouts of cystitis from ingredients that were irritants. Thus when I went to the doctors my urine samples were always clear. Always worth a diabetes check too.
Another thing that helped was if I felt like I was coming down with one I also took thrush treatment tablet as I found this seemed to get rid of it. From many rounds of antibiotics I found thrush more reoccurring. Hope this helps.

Cutting out sugar is helps enormously

I had this for over 2 years. Despite me doing what you're currently doing and having private medical insurance, it took me to change gps and to insist on a private referral to a specialist.

Without exaggerating the specialist changed my life. When I went to him I thought I was uti free - I was so used to symptoms they became normal. Tests showed my bladder was badly damaged : infection deeply burrowed into lining so I had 3 month low dosage of antibiotics. I'm still regularly monitored private (insurance), but tbh if I had to pay i would for the sake of my sanity.

If private isn't an option not suggest to gp 3 month prophylaxis course of antibiotics - I had nitrofutatonin. Honestly cranberry and d mannose will not cure it if it is deep rooted as was the case with me.

I had a friend with diabetes, I can read your testimony like it's hers. Sugar is a sex killer. You should go private definitely. Cotton briefs, skirts over pants, and hold ups over tights ( Keep it dry so you don't have to be dry).
Soap is so not your friend down there. It's not the right PH. Water only.
You might want to change your diet, sugar acidifies the body and lowers your immune system. This is prevention not cure.
You might have a food allergy, you have to check your hormone level as it was stated previously. I would definitely go private. This is central. You need to function. Big hugs.

Thank you for all of your responses.

I am 29 and have suffered since I was about 18. It used to be mainly sex related but nowadays I basically live with it every day, I manage it but it's always there - and the flare ups are debilitating.

My diet is extremely boring - all I drink is water! I don't touch tea/coffee/fizzy etc as from all the research I have done online these can be triggers. I don't eat anything spicy or acidic, won't have fruit juices etc.

I had blood tests at the hospital last week, would this have flagged up problems such as diabetes? Reading the blood test sheet back it says they tested for glucose.

Funnily enough last week I did buy the urine testing strips from the D Mannose website. I was tested yesterday again at the doctors, I have just phoned for the results and they have apparently come back normal so I have booked another appointment for this afternoon. I used the strips for the first time yesterday and it showed a high level of leucocytes! So I feel like I am being fobbed off by this doctor.

I am going to insist that this doctor does something for me today. If he doesn't I am going to book another appointment with a different GP. I refuse to have yet another holiday ruined by this horrendous problem.

If this doesn't work, when I come back from holiday I think I am going to have no option but to have to go Private. I haven't got insurance or anything and would have absolutely no idea how this works?

I have had infections too every month for past couple of years, nightmare, and causing me lots of issues too. I think the answer is long term antibiotics but can't get them either. Did get referred to NHS specialist but it was 2 months then a doctors appointment then 2 months then a test then 2 months an appointment then 2 months and a test then they said they would need to rerun all tests again. I gave up at this point. Did go private via work especially got lots of blood and negative NHS test, much better but I just moved so didn't complete. Wierdly I tested negative on NHS twice but bad infection on private tests.

www.chronicutiinfo.com