Embedded/Recurrent UTI

[applecharlotte12]

Hi, I'm hoping someone can help me...

Embedded uti since last November triggered by a kidney infection, had ultra sound and cystoscopy all clear. Tried hiprex, didn't work. I take Cranberry tablets daily although the urologist said not to bother.

On a low daily dose of antibiotics (did 3 months trimethoprim now on cefalexin) but still have mild symptoms that flare into a full infection 2 x month. It's only when I take a full dose of antibiotics that I start to feel okay, but when I drop down to low dose, symptoms come back immediately.

I work full time and am hanging on by a thread - the daily maintenance and headspace is horrendous. Plus it's affected my relationship.

I don't drink anything but weak decaf tea, water and cranberry. Gave up booze (2 years ago), fizzy drinks, caffeine, sex, tomatoes, citrus fruits.

Has anyone come out the other side of this? What worked? How long did it last? I originally saw a private urologist but am now waiting to be transferred into the NHS. Any advice, guidance or shared experience would be welcome 🙏

So pleased you have seen someone so quickly. I hope the antibiotics settle down for you. They didn't mention anything about vitamin c to me but I take 1g in the morning and again in the evening with hiprex.

I've had 2 days of no symptoms after 12 days of full dose Cefalexin so am hoping this is the start of recovery.

Thank you so much for your help and fingers crossed you continue to feel better .

i feel better than yesterday, re antibiotics, so that’s a good sign.

I had a UTI for 6 months and it wasn’t detectable from a urine test, I eventually got a swab done when I was referred to a gynaecologist which showed the UTI. Pretty sure it was treated with a strong antibiotic like metronidazole.

I’m being treated at Artemis. I’m sorry but their tests can’t possibly show you have 3 different bacteria. That’s not how they work.

I had this after a kidney infection. It was awful. It was only after I asked GP what was stopping them from doing a blood test (thanks vet friend!) that I got a referral to urology. They had me sorted. 6 months of two types of string antibiotics (can’t remember which once but not trimethoprim as had suspected allergic reaction to that). Worked for me but they kept me under their care till I had been off the antibiotics for a while just in case.

Nothing came back when GP sent it off for culture - but urologist said that’s not unusual. Everyone has some bacteria so a negative sample isn’t completely bacteria free.

Hi @applecharlotte12 how are you, Is it normal to keep having symptoms while taking antibiotics, I’m 6 weeks into this journey, I’ve come off hipRex for four weeks as I felt sick. I just want to go to the loo all the the time!

Hi

I’ve also been suffering for the last year with an embedded UTI. It’s been truly horrendous dealing with medical misogyny and fobbed off at every turn. Thank goodness for my own research and finding out about embedded infections.

I started treatment with Harley Street a few weeks back and I’m on 100mg nitrofruantoin and 1mg Hiprex twice a day. I feel like my symptoms, although improved, are still noticeable. I’m also feeling quite nauseous/dizzy/ headachy on the tablets. Did anyone else find this?

I need to go back in 3 months time and I’m praying there is an improvement. It’s a very mentally and financially draining disease!

Hello @MamaAlabama
I am so sorry you are suffering as well, it’s all consuming. I also was robbed off and you start to think you’re going mad. My symptoms have improved but only slightly as well.
I am also with Harley street and went about 6 weeks ago, I’m on trimothprim and started half a tablet of hipRex which was fine but as soon as I upped the hipRex I felt so sick I asked for a 15 min appointment to see what I should do. Dr Malone Lee said to come off the hipRex for a month and slowly introduce again, it can cause sickness and dizzyness. You could email them but they will only do a 15 minute appointment for £50 now as people were emailing them too much. I was also sent a letter and the heading is ‘saving money’ did you get that. I didn’t originally. It explains when having a flare up and how much you can up your medication and what to expect.
Also it can make you feel so low, it’s very hard to deal with it. I hope yours improves for you.

Yep, I’ve been there. When you say your bladder flares twice a month, is it mid cycle then just before your period? If so, a contraceptive that stops your cycles (eg mirena) might help. I see Raj Khasriya at the Portland for my bladder and think she’s great

Thank you for your kind words. I try not to talk about it with anyone in real life because I’m worried I just come across as being a moaner! It’s difficult when it’s a hidden illness and you appear well on the outside. I hope things improve for you too.

Im not under the Malone Lee team. I see the team at The Portland Hospital. The sickly feeling is awful but I’m going to stick with the Hiprex as I really want this infection gone asap!

It helps just finding this chat and sharing experiences. I don’t have Facebook which I know is a useful forum for sufferers.

@applecharlotte12

Hi, OP

I've had recurrent UTIs for 20yrs so l feel your pain.

Have you been checked to see if you have kidney stones?

Do you wipe front to back?

Drink cranberry juice instead of cranberry tablets

I take Hiprex twice a day and have kidney stones for the 3rd time and suspected Crohns - which might be contributing.

My one piece of advice after being pushed from pillar to post, is don't stop advocating for yourself.

It took 20yrs for me to get something that actually works, who knows what would help happened if l had actually been listened to.

Hi @MamaAlabama i found the fb forums a bit scary with everyone’s symptoms, this feed has been great. I also don’t like talking about it to my family as it’s on going and boring for them. I didn’t know the Portland had a good clinic, I’ve just watched a very good talk from there. Good for you keeping the hipRex going, I’ll try and get back on it. I’m also post menopause and have started estrogen pessaries, which are meant to help. I just remembered, Malone Lee mentioned a hipRex capsule that by passes the tummy, if you feel really sick, but I don’t know anything about it. I’ve also been in contact with bladder uk and the nurse is amazing there, so supportive. Hope it all calms down soon for you .

Yes I’m about to start HRT and pessaries as the consultant believes my UTIs were caused my perimenopause.

Can I ask what antibiotic and the dose people are on? How do you find it. I do worry about the long term antibiotic use but try and eat lots of kefir and kimchi to counteract it!

Hi everyone, I'm sorry I haven't checked the thread in a few weeks, but I can see that a few more posters are also suffering. I'm so sorry to read this, sending hugs.

@MamaAlabama - I've been on 1g twice a day of cephalexin since the first week of June and also take Hiprex and vit C twice a day. I have no side effects from either (although I started Hiprex back in Dec and don't think it helps me tbh). I am also going on HRT next week to see if that will help... please let me know how you get on too.

@Forn how are you getting on with Hiprex in the last couple of weeks? Is the Trim helping do you think? Sending well wishes to you.

I am considerably better since my last post. For the past month, I have been symptom free except if I drink coffee at all - even decaf or too much tea, exercise (running or a long walk) - these activities still trigger a mild flare for two days but i just up my antibiotic dose on those days (by 1mg, as suggested by Dr H at Harley St) and it's fine - I can work, still go out and it just feels like mild cystitis. Work have let me work remotely the last couple of months which have also helped but I'll be back in 1 day a week after the 26th, which feels manageable now.

It's been incredible to feel almost back to my normal self, although if I delay a dose of antibiotics too long or miss one I do start to feel mild symptoms, so I'm not out of the woods yet. I have also yet to try having sex..!

I also started having counselling a month ago and it's been helpful to talk to someone about the psychological side of having a chronic uti. My anxiety and hopelessness was through the roof when I originally posted but I'm trying to listen to my body and let people know if I'm not up to something rather than try and just crack on to save face.

I have my 12 week review with Dr H at HS on 26th August where they will retest for bacteria and white blood cells. I anticipate the numbers will have dropped but that I'll need to stay on cephalexin for a while.

Please update me on how you all are.

@BritishDesiGirl Thank you - yes to cranberry and wiping front to back. I had scans on my bladder and kidneys as well as a cystoscopy back in January which showed everything was normal and no stones, thank goodness. I hear they are super painful so sorry to hear you've suffered with them.

@Forn to answer your question earlier in the thread (sorry for the delay!) I didn't feel any better in the first month of treatment, maybe toward the end of the month my symptoms calmed down but I would say it then improved a great deal. I hope you are at that stage now as I see your last post was on the 1st August...

@applecharlotte12 thank you for the update and I’m so pleased you’re on the road to recovery.
I’ve come off the hipRex but will try it again this week. I’ve upped my trimethoprim to three a day, when I try to go down to two, I struggle. I don’t have the back pain or dizziness when I have a flare up, just need the loo a lot. Hopefully that will calm down and the gaps between flare ups will get bigger.i was at the end of my tether a month ago but feel the last month has been better. What a rollercoaster this is x

I’m glad there have been some improvements! Always good to hear.

I started the HRT about 2 weeks ago now and so far it’s been ok. No noticeable changes really.

I’m supposed to be taking 200mg of nitrofruantoin but I’m still not brave enough to go up to that dose as I’m currently on 100mg and terrified about side effects etc. Hopeless I know when I so desperately what to get well. I do suffer with anxiety though so it makes it extremely difficult.

@applecharlotte12 it seems a very slow process, if I go down to two antibiotics a day, it flares up again. I need to start hipRex again.

so how do you feel now. Are you in your third month?

@applecharlotte12 sorry I e read your message properly and see you’re nearly symptom free

@MamaAlabama try to introduce another 100mg of you can, maybe take some probiotics as well. I think once one takes that step we are almost relieved we’ve done it.

@fornhow are you feeling? Yes I've had 2 straight weeks of no symptoms but have still avoided coffee and exercise as those triggered me 3 weeks ago. Hope you've had a couple of good days?

@MamaAlabamaI was on 100mg of trim for 2 months and it was not strong enough so do try 200mg, it might make a difference, increasing helped me. I had no side effects. HS then put me on 2g a day of cephalexin which seems to be very effective.

Hi @applecharlotte
unfortunately not great the last few days, I’m on three 200g trim as dr Marlene Lee said he didn’t want me to change antibiotics after one month, I’m now going into month three and really need to take the hipRex again as I think it may help.

Ive just written down that I don’t get the muscle ache, the doom feeling and heaviness down below so that’s a start. Just this constantly wanting the loo but again not like before the antibiotics when I’d almost wet myself! I’m trying to look at the positives. I’m tired as I’m up a lot in the night.

I think my review is after four months with Dr Malone Lee , but I should check.

@applecharlotte12
im so pleased you’ve had a good few weeks, that’s so positive

Morning, how is everyone feeling at the moment?

@Forn- it sounds like you have had some small improvements. Finger crossed this just keeps increasing over the weeks. Sorry that you are still not feeling great tho, it's just soul destroying this condition. Sending hugs.

I feel like I'm falling apart at the moment with perimenopause (just about to start hrt) this chronic uti and a tear/frozen shoulder issue that I've been waiting to get help with for 9 months but am still waiting for an appointment.

I had some really strange results from my first review meeting at Harley street yesterday and wondered if any of the wise folks on here had any thoughts as it's got me baffled.

As I've mentioned before, I've been taking full dose cephalexin and Hiprex for 12 weeks. At my first appointment, my urinalysis showed 20 epil cells and 4 white blood cells. Since I've been feeling much better over the last few weeks I expected my numbers to have decreased but they've jumped up to 200 and 180!! Dr H said he'd expect me to be in a flare with those readings, and that it's strange. He also saw thrush in my urine and said this could be skewing the results. I now have to take boric acid as well as another 3 months of Cephalexin and Hiprex. I am dry down there (had put that down to Peri) but not really suffering with thrush either.

Im obv grateful that I'm feeling better but am disappointed my results weren't improved. Im so sick of having this condition!! Thanks for letting me vent!