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.

I began to get regular UTIs and had my dose of antibiotic strengthened as the Bgr wouldn’t go.

I rang the out of hours number as it was the weekend and I daren’t leave the loo for the bearing down feeling. Wonderful doctor got back to me and recommended HRT via vaginal suppository. Haven’t looked back since. Have you explored anything like this?

I'm so sorry that sounds terrible!! I had recurrent cystitis after birth, horrid. Antibs make my eczema really bad so got prescribed stronger stuff & tried a hippy/natural route of 4L water, cranberry everything and pre and probiotics. It did the trickbut I appreciate it's different for everyone

www.gardenoflife.co.uk/microbiome-womens-blend-shelf-60-capsules/12323332.html -

Have you tried pivmecillin ? Or seladix I think the brand name is? It’s the only antibiotic that works for me. They prescribe it more frequently in Scandinavia I think

Thank you to you all, so much. Taking all the pre and pro biotics, oregano, antihistamines. It's an e coli infection and responded to trimethoprim in the testing.

I will try to have a go at:
Pelvic floor specialist
No sugar diet
HRT suppositories (any chance they can make endometrial cysts grow?)
Hyacyst instillation

The Malone Lee team recommend L-methionine alongside the hyprex/antibiotic combination. I haven't got hold of it yet but perhaps some one here would like to try.

I don't think I can anything in the penicillin family after swelling.

After recurrent uti's and then pain and urgency, i was diagnosed with painful bladder syndrome. I've had a bladder stretch twice which really helped symptoms. Then when the stretch wore off i started using cystistat - another type of bladder installation administered via self catheterization at home once taught.

There is also an antibiotic called fosfomycin which has worked really well for me. Its not given straight away as i know its more expensive for the NHS to prescribe, but if you're at harley street that shouldnt be such an issue. Its a sachet that you disolve in water, a repeat sachet is sometimes needed a few days later. Good luck.

Also have you tried cutting your sugar intake? Eat as little sugar as possible for a couple of weeks and see if it helps. It's brutal but I have never had UTI since cutting refined sugar from my diet (sweet snacks, cake, sugary drinks etc. I still eat fruit like berries, and dark chocolate). I had horrendous UTIs non-stop for 3/4 years before.

(Aware that I may sound insane and one of those 'you can solve everything through diet!' people, but being careful about sugar intake genuinely changed my life. I also had recurrent thrush and that's gone too).

It sounds absolutely ridiculous, but I’ve found that putting a hot water bottle on the soles of your feet takes away the urgency. I think I read it on here originally and it really works.

I'm a Malone-Lee patient. My symptoms flared horribly when I was first on the antibiotics and then settled. Also, if you are struggling then contact then. There are many many different treatment options. Hope you get some relief soon, I know how horrific this is

Ps don't drink absolutely loads while on the abx. Obviously stay hydrated but too much fluid will dilute the antibiotic in your bladder

Have they ruled out interstitial cystitis??

It won’t get rid of the UTI but have you tried Azo Urinary Pain Relief? They do turn your urine a very bright orange but helped with the pain!

I've had similar. When I was in my 20s I had an infection that lasted for months. None of the antibiotics touched it including Trimethoprim. After several months of hell a urologist gave me Ofloxacin - which can cause tendon damage, I know - but it cleared it. I still get infections every year or so and the only thing that works is this one although it seems to be getting less effective. I actually have an infection now and fetching my antibiotics tomorrow. This whole UTI situation for many women is outrageous. There needs to be more funding and research into chronic UTIs because they really are horrific.

I did a home testing kit today for BV which showed that the pH levels in my vagina are out. I think that you need to have an acidic vagina to control bacteria. I've been to Holland and Barrett to get some probiotics specifically for this problem ie for women with recurring UTIs. It might be worth trying something like this alongside your treatment. Are you on the chronic UTI Facebook group for women being treated by Dr. Malone ?

Sorry, just seen that you're taking probiotics already.

Thanks oldwives I'm in that group yes. It seems hard to get the pH acidic. Vitamin C works but at such a high dose that it's hard to tolerate.

Interstitial cystitis seems to be a bit of an umbrella term with a diagnosis of exclusion like fibromyalgia? I'm not keen to get it.

Thank you Ethel. Can I ask how long it took to feel relief? I'm about six weeks in (though not taking full hyprex yet and trimethoprim apparently isn't much of a beast without it) and on a downward spiral.

Azo didn't help. It did look apocalyptic.

newnewnewnewnre I know what you mean about the side effects of Nitrofuarantin, I had 12 courses over the space of a year & lost the feeling in my legs, feet & fingertips. I recommend
D Mannose & also Ozo urinary pain relief tablets but I warn you they colour your urine bright red & it looks the same as blood. I take 1500mg of D mannose a day & use the Ozo tablets if I get a uti. Are you by any chance menopausal? If so ask for oestrogen cream as vaginal atrophy can cause uti.

I've suffered with interstitial cystitis for over 10 years and know exactly how you're feeling. What worked for me was Nortriptiline. It helps relax the bladder and really decreased my pain and frequency. Something to consider, as it works quickly and well, plus fewer side effects than with amitriptiline which they also use for this.

⬆️⬆️⬆️

This.
I did wonder how old you are OP.
I suffered years of UTIs, times it nearly took me over the edge.
But since using topical HRT by way of vagifem regularly (whispers while touching wood) they've pretty much gone.

@Crumpleton and @Paperdolly if you don't mind me asking, how old were you when you started taking this?

61

Hi- it took a good few weeks. The Hiprex really helps eventually but can initially make your symptoms flare as it is very acidic. When I started it was just with cefalexin and then I added the Hiprex afterwards when things were already improving. Sounds like you might need a treatment review - could be tricky to get you on the right meds. I was in such a state when I first went there- peeing 12 times a night and in horrific pain- and my life has been changed beyond recognition by the treatment. Hang in there if you can

I had this in my early 20s...endless rounds of antibiotics, constant pain and burning, couldn't sleep, urinary incontinence...my life was actually hell and I remember a doctor saying I would just have to take longterm pain relief 🙄

Eventually I was put on a low acid diet (no fizzy drinks, no sugar, no citrus, no tomato) and had pelvic acupuncture and that cured it.

I really really recommend a book called The Way Out by Alan Gordon. Bladder issues crop up frequently in the chronic pain field. I have suffered with it in the past, as well as chronic UTIs. I consider them two separate issues. One that can be medically treated (the UTIs) and one that can be approached using Mind Body pain approaches (urgency, bladder sensitivities). This approach is first and foremost NOT saying that this condition is 'all in you head' (particularly if you do have an underlying medical condition) but it is accepting that we can get stuck in a cycle of pain that gets fed by fear and an overwhelming focus on symptoms. By using some techniques described, you may be able to take a step out of the fear/pain cycle and give yourself some breathing space.

I am currently using the techniques again for an acid reflux issue. It has not cured it, I know there is an underlying physical issue that causes my reflux. But I have gone from barely being able to swallow to a pretty much normal life using the techniques he discusses.

Understand the 'IC' diagnosis i have monthly installations too. No flare for over a year. Coupled with HRT which low oestrogen can cause urinary issues it's going in right direction. I know some women who have been on antibiotics for years and stopped as just not helping

It might be some people do just have bladder inflammation and it's classes as like an autoimmune disease. Much like IBS and fibromyalga they just dont know what causes it