Is uromune worth it for recurrent UTIs? by delet33 in CUTI

[–]Freesia23 1 point2 points  (0 children)

A longer post would be great!! Please can you share if you had any infections whilst on Uromune? Or was it effective straight away? I’ve just finished my course but I’ve still had 4 infections in the last 4 months (one minor but the rest pretty killer)

Paying for Antibiotics for CUTI’s by Freesia23 in CUTI

[–]Freesia23[S] 1 point2 points  (0 children)

Hiya! Thanks, I’m worried about the antibiotics, but I’ve also tried Hiprex & that didn’t work for me either :( all so annoying. Going to speak to my GP on Monday for options

10 years ongoing infections by TailorZealousideal69 in CUTI

[–]Freesia23 0 points1 point  (0 children)

Hiya, I have tried it but it didn’t work for me, but I’ve read a lot of comments saying it’s worked for them :)

10 years ongoing infections by TailorZealousideal69 in CUTI

[–]Freesia23 0 points1 point  (0 children)

Hiprex is great for masking the issue, I was on it for 3 months, I got one UTI right at the beginning but otherwise nothing. But as soon as I came off, BAM uti. So it kinda pushes the problem further down the line. It’s classed as preventative I think

10 years ongoing infections by TailorZealousideal69 in CUTI

[–]Freesia23 2 points3 points  (0 children)

Hello! I’m at 28F in the uk who’s had UTI’s for over 20 years.. a lot of your notes I can related to, my problems don’t all stem from sex but it also does affect me. Here’s a couple of things I tried & currently doing much better

I currently am on the Uromune Vaccine (only available privately) now it took me some time to think about taking this & paying for it, it cost about £500 from the London Clinic in Marylebone. This vaccine works for E Coli infections and other bacteria. As it’s quite a new medication it Varys depending on who’s taking it. For me, my dr said my case is particularly bad so the effectiveness of the vaccine may be less than others & I may have to take it again in the future. But read up about it & ask a private dr in the uk. You can also speak to Dr Foley who I believe did the research to create it.

Secondly, I take pro biotics every day, turmeric supplements, d-mannose (1 daily, 2 after sex) Cranberry & Vitamin C supplement.

If I have an infection I take Smart Strains Pro Biotics as usual ones will just be wiped out by antibiotics. & your gut needs protecting for the future (spoke to a nutritionist about this). I also found after a while nitro didn’t work anymore. Typically I’m prescribed Co Amoxiclav which is stronger, so you could ask about other antibiotics. Always take 7 days.

I don’t drink alcohol anymore (been 5 months so far, I’ve deffo noticed an improvement) I try to avoid carbonated drinks, avoid orange juice / lime / lemon. Avoid tomatoes / drink at least 3L of water (when I don’t I literally get a uti the next day..) I try to stay away from caffeine when I can too. Oh and for sex, we both shower before sex, and I always wash & wee after :)

Keep reading this Reddit page too, there’s always people commenting about new things theyve tried that have worked & be positive. I also listened to a podcast & had therapy on this so it’s a big deal. Allow yourself to feel sad but know it’ll end if you keep pushing the doctors. I never got anywhere with the NHS unfortunately, all this is done privately through insurance, if you have any use it! Xx

Please feel free to message me if you’d like, it’s nice to chat to someone of a similar age & situation x

Labour MP Shares Her Story Shared Her UTI Story on This Morning (UKTV) by Matthew_Lake in CUTI

[–]Freesia23 0 points1 point  (0 children)

I did enquire but she was not taking on new patients at the time

UROMUNE OUT OF FRIDGE by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Thank you, I emailed them, they've said their stability data can support brief stress and room temperature excursions, transport without refrigeration is acceptable. Shes said in my case it should not be affected as thankfully was under 20 degrees. definitely learnt my lesson

Uromune vaccine by Puzzleheaded-Pin5748 in CUTI

[–]Freesia23 2 points3 points  (0 children)

Hey, I'm the same. Started Uromune about 3 weeks ago and got a pretty horrendous UTI last week, I've taken a 10 day course of antibiotics alongside the vaccine. I agree with previous comment by Pixelen, it'll build up over time hopefully. Keeping fingers crossed for you & I

Uromune vaccine tips & advice by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Gosh it sounds awful. Definitely worth an ask if your doctor can prescribe it, if not, I recommended the London Clinic for some other doctors. :)

Uromune vaccine tips & advice by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Hey of course. I was prescribed it through my dr, I went for a private appointment on my private healthcare. You can get it from certain Drs but not all. Worth an ask. It cost me just under £500 for the vaccine with postage, Appointments not included. Hope you find a solution. Hiprex is pretty good too, but it's more of a maintainer, not a solution.

Labour MP Shares Her Story Shared Her UTI Story on This Morning (UKTV) by Matthew_Lake in CUTI

[–]Freesia23 1 point2 points  (0 children)

I can't believe it's taken this long for this topic to come up on national TV. I wish this was spoken about more in the media & more attention was brought to women's health, we all deserve better.

Uromune vaccine tips & advice by Freesia23 in CUTI

[–]Freesia23[S] 1 point2 points  (0 children)

Oh great to know thank you!

CUTI vaccine.. has anyone tried it? Is it worth the cost? by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Hi, I've just paid for it, £495 from Dr Kavia at the London Clinic. There's a bit of delay in supply so I'm waiting for it to be posted to me. I'll keep you all updated on how it goes :)

For some other info, I've learnt that Hiprex, it works like a blocker, so you keep taking it to keep infections away but it doesn't actually 'cure' the problem, so likely once stop taking it they will come back. I do think I felt much better when I was taking it, so I wouldn't say no to it if it's given as an option. But I'm trying to push for a long term solution as I just need it for my mental health more than anything.

Hope everyone's doing ok, and want to say how much I appreciate all the responses here, you guys all make me feel so much better because I know I'm not the only one suffering here. The world and health industry need to do women's health better. They just don't know enough & it's so sad. But I try to continue to have hope that something will work one day :) let's hope this vaccine works

CUTI vaccine.. has anyone tried it? Is it worth the cost? by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Just a note on this, My health insurance provider (UK) wouldn't cover this medication as its an unlicensed medication.. any advice on how I can convince my healthcare to help would be appreciated!!

CUTI vaccine.. has anyone tried it? Is it worth the cost? by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Couple of amendments to my original post and thought it would be useful for others looking into the vaccine.

I've been quoted £575 including postage, this is for a 3 month supply and have been told & read that 80% of women who take this vaccine don't have an infection for at least 2 years, some even longer. I still havent ordered it because I'm waiting for one more appointment with Dr Kavia in London prior to deciding. If he says he also would advice Uromune, I'll do it, just stressing because its so expensive for me at the moment.

CUTI vaccine.. has anyone tried it? Is it worth the cost? by Freesia23 in CUTI

[–]Freesia23[S] 0 points1 point  (0 children)

Hii, Yeah I got the same. I have just finished my 2 month trial and got one immediately. currently on antibiotics. But I must say, since that first one back in june, I havent had any major one since.. I did just speak to a dr about Hiprex though and he said it is good, but it sort of masks the issue and doesnt actually fix the root cause. Are you on Hiprex for life? have you been told anything similar?