I have been advised to take an E COLI Vaccine to help with my recurrent UTIs which I just cannot get rid of even with intensive antibiotics, Hiprex or D Mannose
has anybody else taken this? It’s not licencef in UK but my private consultant can prescribe it for some exorbitant cost( approx £500)
it’s supposed to have 60% success rate
Sounds as though I am in the same boat as you so to speak. Pelvic radiation has left me also with recurrent UTI's. Just one course of antibiotics after another. E coli being the cause. Haven't heard of this vaccination, will follow your post with keen interest.
Are they definitely UTIs? I was in this position. Constant antibiotics for UTIs. However after investigation I was diagnosed with radiation cystitis which gives all the same symptoms as a UTI ie. blood in urine, urgency etc. I am now on a medication to help with these symptoms and have been much better (I still have flare-ups but no where near as often).
Thank you for your reply, may I be as bold to ask what medications has your Doctor prescribed. My GP sometimes mentions E Coli and other times just blood in the specimen.
The medication I take is mirabegron. For pain associated with the radiation cystitis I find tramadol works best for me. Last week I had my second cystoscopy under general anaesthetic (it's too painful without a GA). This is just to keep an eye on the bladder to make sure there is nothing more serious going on (which there wasn't). I have a follow up appointment in 3 months. I can let you know if any further medication is recommended at this appointment. I find the mirabegron very good although I do still experience flares but definitely no longer on the same level and not as often.
I don't have any experience with this vaccine, but can certainly empathise about UTIs. Bladder Health UK might be able to help? bladderhealthuk.org/
Thank you. I will contact them
I would also be interested in this as, at the moment, I am having to take internal HRT tablets every three months for three months. I have a friend who has recommended Hiprex but I don't really know what that is - have you tried it? What is it? and, I guess, it didn't work for you but does it work for others, do you know? Any information appreciated and I'll watch about the vaccine if you decide to go for it! Thanks and Good Luck
Hiprex is Methenamine Hippurate and needs to be taken with Vitamin C . I understand it becomes formaldehyde!!!!
problem for me is that although I don’t have the symptoms of a UTI when I test my urine it’s still full of leukocytes and I feel really lethargic and not on top form at all. An in depth bladder analysis showed my bladder to be full of E Coli which is why I want to start the E Coli Vaccine
Are they definitely UTIs? I was in this position. Constant antibiotics for UTIs. However after investigation I was diagnosed with radiation cystitis which gives all the same symptoms as a UTI ie. blood in urine, urgency etc. I am now on a medication to help with these symptoms and have been much better (I still have flare-ups but no where near as often).
I do have radiation cystitis but am being treated by NHS and private consultant as if it’s the same as a UTI?
I definitely have E Coli in my bladder which is why I am trying to get hold of an E Coli Vaccine
But I would love to know what treatment you are getting for radiation cystitis?
I saw a Kinaesiologist who recommended a number of things to help including , reishi mushrooms, Chlorella, Fulvic acid, Vitamin C and Selenium which I started 2 weeks ago . She also said silver helps combat bacteria so have that too!
Look forward to hearing from you
Thanks so much
Janet
Hi Janet,The medication I take is mirabegron. For pain associated with the radiation cystitis I find tramadol works best for me. Last week I had my second cystoscopy under general anaesthetic (it's too painful without a GA). This is just to keep an eye on the bladder to make sure there is nothing more serious going on (which there wasn't). I have a follow up appointment in 3 months. I can let you know if any further medication is recommended at this appointment. I find the mirabegron very good although I do still experience flares but definitely no longer on the same level and not as often.
I have suffered an irritable bladder and some proven UTI's since having pelvic radiotherapy in 2011. This year I have made a concerted effort to avoid antibiotics and have used D Mannose every night , therapeutically. I follow the instructions for symptomatic treatment when necessary and find that cloudy urine eventually becomes clear and less frequent with time and patience. Instructions to avoid acidic fruit and wine and fizzy drinks are helpful but I succumb to a glass of wine with meals at the weekend! I am scrupulous about vulval hygiene and avoiding faecal contamination of the urethral area. If I get diarrhoea , I may take a shower if I think it is necessary. Baby wet wipes are very useful but must not be flushed!!!I keep paper bags for disposal of same.
D Mannose does what it says on "the tin" . It is good to take control of things for myself! ( It is not cheap but I do not believe it is available on prescription despite its current approval by many urologists)
Best wishes 😊
Jude
Thank you. I am taking this alongside Hiprex but am trying to wean myself offHiprex as I think it’s making me very tired
Like you I take wet wipes with me everywhere but use PH neutral ones (FemFewah) as others can irritate
A vaccine for E coli sounds odd. To speak of E Coli is like speaking of dogs or cats. There are many strains of bacteria in that overall group. The baddies are the strains that cause intestinal infections but the ones that live in a healthy gut can also cause problems if they get into a wound or the bladder or elsewhere in the body. There are billions of them in our intestines - essential for healthy functioning....
I never use wet wipes in the vulval area - just around the anus.
Kind regards Jude
This is what o know about it
medicalnewstoday.com/articl...
Interesting information but rabbits and mice are a long way from humans in their metabolism and function! I will stick with my D Mannose for the time being! Antibiotics alter the gut flora too and I use a probiotic coconut milk on my cereal to replenish the good bacteria which form a major part of our immune system as they live in our intestines!
Yes I use a very strong pre and probiotic and drink lots of coconut water
I had a pain in my lower back last week and was told that a UTI can travel up to the kidneys and turn to sepsis. My urine is full of leukocytes and it worries me so will have the vaccine a go but continue with the D Mannose etc and hope for the best. Will keep you posted. My Consultant said it has a 60% success rate. I will ask him for the research link
I’ve been having constant UTIs’ and think mine is due to radiation cystitis too. I have regular bladder washes which reline the bladder walls with hyalauronic acid. I also take a supplement called D Mannose everyday. I do have scarring of the left kidney and am now awaiting another CT scan to check both kidneys. I now have regular bladder leakage and it doesn’t empty properly. Have just started self intermittent catherisation to help empty the bladder fully. Currently I do that once every 1-2 days depending on how much urine the catheter voids.
My late side effects clinic appointment is on 19th December so it will be a big discussion about this and the many other side effects I’m struggling with. Atm I’m finding this all a little overwhelming. I Qufora regularly and now this too. What’s next? My days are filled with self cleaning emptying and hygiene as well as constantly cleaning the bathroom. I get quite anxious at times too especially if we want to go out. It’s becoming a military operation 😱
I am due a bladder wash out in January as well
I understand your issues and concerns. I am in a similar boat re the UTIs but kidneys are ok. Bowel also affected but keeping to a very low fat diet seems to work quite well . Going out is a military exercise as you say. It’s hard to stay positive
Thanks for sharing and I wish you well
I've recently become aware of the E.mbrace Study which is assessing an investigational E.coli vaccine in adults age 60+
Theres a lot of uti vaccines out there just not in the UK, my mother in portugal had the strovac vaccine, its a german vaccine, she never had utis again. In the uk can only find the uromune for around £500 plus consultations....theres more than those two. Theres actually total 4: Uro-Vaxom®, SolcoUrovac®, StroVac® e Uromune®. I just dont get why is so difficult here in the UK. 😔
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