So as some have experienced and will know frequent urination is quite a common issue for this lack B12 (please no one reply saying it’s an infection it’s not I’ve had very expensive tests and hundreds of antibiotics) in February I had 6 loading doses and I swear by 5-6 one all my urination issues cleared up for 6 weeks.
they returned and then a few weeks of suffering I had a further 6 doses. This time however my symptoms went away much quicker but also returned much quicker… I was ill though with flu during the second week of loading doses so not sure if that’s why?!
Anyway I have now started self injecting (although my partners doing it) and I am 4 doses in and the frequency of urinating still isn’t great. I maybe get up once in the night, but in the day it’s still far to regular for me to go out. So I am wondering how long have fellow sufferers with these symptoms taken for them to clear up? Looking for some hope. I don’t get why when I was at my most deficient they cleared up so much quicker than now? I just don’t want to be stuck with permanent damage as I can’t picture living with this.
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Gobbozoid
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Over 3 years and 6 months I have gradually increased injections to 22.5 mg per day total using three types of B12 over 5 injections per day.
At first my urination frequency was distressing. It was distressing until I injected 6 mg per day.
Each time I increased my frequency or amount I would urinate more and the need to urinate more intense then it would return to normal after a few weeks.
I don’t understand why when my b12 was at its worst my frequency issue cleared up with less jabs than it is now? Both previous times a week or two of every other day did the trick quite quickly…. Not sure why it’s so different now.
My frequent urination has never resolved. It is better than it was. I used to have no warning and couldn't hold it at all. Which was so embarrasing, I would suddenly just pee wherever I was. This quickly got better with B12 but I still have to go all the time. I have had to adjust to it. So before I go on long journeys I don't drink as a precaution. And I always carry toilet paper with me on walks. I can live with it. I'm just grateful that I can now walk and talk properly.
I haven’t thankfully had accidents it’s just really uncomfortable and I need to pee. Hopefully as I haven’t got as bad it will get better than I am currently?
That's the problem. B12D healing isn't linear. And it's also quite random - everyone seems to have a different experience. For example I didn't have any reversing out syndrome. I suppose it's because everyones body is different and 'one size doesn't fit all'. Although most doctors treat us like they are. So no-one can answer your question. You can just hope.
It can be related to B12 because of the neurological issues. It also can be completely unrelated too. There are times when people have biofilms in the bladder which harbor bacteria that are not picked up in almost all urine cultures. NextGen dx offered testing for complex pathogens. You should probably see a urogynecologist they specialize in these types of things.
Are you female? It could be genitourinary syndrome of menopause. You may need vaginal oestrogen. If it’s B12D it will eventually clear up with EOD injections. It could be both!
Already done all the urine tests available and even a microgen dx test I paid for apparently my urine was so sterile that they tried 3 times to grow a culture and couldn’t. I’ve even had camera in my bladder and nothing.
It’s only ever stopped with b12. I pray it does again
I'm sorry. It's horrible. Sounds like you've ruled everything else out; infection, hormones, prostate, pelvic health. SI daily and make sure folate and ferritin are in good range. Fingers crossed it lifts. Hard to live with.
In my experience, the body adjusts to higher doses and starts removing more b12 from the body when we inject too much. I felt worse on higher supplementation than on lower ones, like you, although initially there is a boost. Given your current situation, perhaps once a week can be done. The idea is to be able to reduce the frequency, although many find it difficult or even impossible to do once on heavy frequent doses.
charks has the best answer and most accurate. Healing is not linear and quite random. When I started this journey over nine years ago, some things got better immediately, never to return. Others are still just as severe and show no signs of getting better. Other things come and go with no rhyme or reason. But overall, I am much better and my quality of life has improved immensely. I inject 1mg twice daily, which seems to be the best routine.....for me. Good luck in your journey.
I did not know this was connected to B12. For years I have spent my life going to toilet to urinate, cannot count the amount of times I go per day but, at night, well I never get a proper sleep, as I wake up 5, 6 or 7 times, so proper sleep avoids me. Thank you, until now I have never made the connection. I thought it was to do with me having bi-lateral dual kidney systems.
I suffered for 4-5 years thinking it was Covid bladder, my gp even said bladder cancer at one point. Turns out it’s vitamin deficiency all along. Maybe get your b12 tested? I just also found out my vitamin D isn’t great also.
I started B12 injections 11 days ago EOD and I developed a UTI a few days ago. Never had any bladder issues before or a UTI, so did wonder whether it was due to starting up B12 injections, although don’t know why. I have just started a short course of antibiotics to clear it up. But have had a couple of embarrassing leakages!
I will say that for me ….when I start with the uncontrollable urges and leaks and sudden rushes to the loo, it is the first indicator that I am low on b12 and need to increase frequency of SI to bring it back to controllable. It’s not instant though.
Conversely when I have controllable but lots of trips to the loo I note it is after I have just SI or been SI frequently for other reasons.
I read this as not enough b12 = uncontrolled flow, and too much and the body is trying to flush the excess out of the system.
I was on 1mg/ml every other day but, had to move to 1.5mg/ml and am now able to “stretch” to every 4 to 6 days depending on how busy, emotional etc I have been.
I have also discovered that dark green leafy veg and some high histamine foods cause me to want to urinate frequently. Strawberries and cabbage are worst for me. I would say keep a food/meds and pee times in a diary to see if there are any common triggers.
I have now had 5 injections. 2 days ago I felt near normal. Yesterday my bladder felt very sensitive. Today well my bladder feels really awful, tender, I move and think I need to pee. I did have alcohol last night and wonder if that’s irritating it somehow?
The odd thing is the first time I had treatment of b12 all my symptoms disappeared pretty much within my 6 jabs and didn’t comeback for 6 weeks. In that time I drank everything, coffee, alcohol, juice etc with no ill effects. But this time I have my 6th jab today and I am honestly having a hell of a time with my bladder, it’s got me almost crying with frustration.
I am wondering if my needles are not long enough so maybe it’s not going in at the correct depth? Although the last one there was no blood so I think it went in muscle.
I am not sure why you are having loading doses for a second time …or have you just started SI.
I know this is so frustrating and may seem never ending. Start your food / injection diary now whilst you can recall yesterdays food and todays symptoms. Write everything down and become your own expert. Keep your notes for your future reference, cos things revisit us all from time to time and it’s good to look back and realise how far you came.
Alcohol is definitely an issue for my bladder lining and while you are struggling it may be better to stick to plain still water ..not carbonated .. carbonated has the same effect as alcohol for me. Drink lots of it, then you will have something to pee.
I think it might be as well to see the GP just to rule out an infection or other issues if you can.
I am not an injection or needle expert but know that the small vials of b12 can be injected into the muscle ((IM) or the subcutaneous fat (SF) It depends on your weight and where you inject as to whether it is IM or SF, I think it just affects the rate at which it is distributed around your body but it goes in. Not bleeding is not a problem. There are others on this forum who can advise much better than me.
I’ve had my urine tested hundreds of times and they say it’s sterile. I’ve even had cameras in my bladder. Every other time the b12 has stopped symptoms but this time it helped but I’ve gone right down hill again quickly. My gp doesn’t want to know anymore it seems.
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