Overactive bladder?? What worked for you

[Sunny866]

I just wanted to share my story and see if anyone has any advice. I have been suffering with UTI symptoms on and off for around 3 years. I thought it was due to large fibroids but I had those removed for other reasons but I am still suffering. I just want to add I do not have any pain whatsoever. My only symptom is the urgency to wee and when I do go to the toilet I am actually producing urine as opposed to small drops you get with a UTI. I am currently in the middle of a flare and have been weeing every 45 mins. I have a newborn and I am exhausted as I can’t sleep due to the constant urgency. Antibiotics don’t help and I’m not sure they would if it isn’t a UTI. I am considering going down the private clinic route to see if it is an embedded infection. Has anyone had this symptom without pain and resolved it? I am thinking whether it could also be an overactive bladder that flares from time to time? I have also been quite good at doing my pelvic floor and that doesn’t help either. The doctor has prescribed me (today) a medication for overactive bladder but I am a bit reluctant to use it due to side effects and also as I know previously flares have subsided. This happened to me around once a month but strangely in pregnancy it didn’t happen at all. Any ideas?

Well I'm gobsmacked- I've been suffering with this issue for the last week or so. No pain just awful frequency. I'm going to try a couple of these suggestions- it's the devil's own job getting through to arrange a gp appointment here so I felt I had to just put up with it and hope it went away. Great advice.

Stopping all caffeine made a huge difference to me.

I have battled symptoms for the last 2 years. I have to say mine got so bad where I don’t even leave the house during bad flare ups for fear of not having a toilet near. After a cystoscopy I was diagnosed with overactive bladder and interstitial cystitis.

Treatment plans have been :

solifenacin
amitriptyline
a food and drink diet plan
physio
quercetin

and now after a very long wait I am finally about to start a catheterised treatment plan which should give me long lasting relief, if not solve the issue all together.

I've had frequent bouts of this too. I recently took tolterodine to get me through Christmas as I was weeing every 20 mins. It helped marginally. Now coming of that and taking d mannose and antihistamines daily. I've given up caffeine, fizzy drinks etc. Alcohol is next on my list to go. I'm sorry for everyone who suffers, but it's nice when you find out you're not alone and can exchange info x

@Stayeduptoolateagain i have been prescribed Tolterodine too. What kind of difference did it make? Any side effects?

I take Amitriptyline and an antihistamine at night. I also take Nitrofurantoin 50 mg every day - this is a low dose antibiotic for an embedded infection. Between those three medications I've got this under control at the moment, although I never get too comfortable since it can flare up at random times.

I always keep a supply of Max Strength AZO which can be purchased from Amazon - it's a life saver when I've got a flare . I'd highly recommend getting some to keep "just in case".

Look up the ICN Diet https://www.ic-network.com/downloads/2012icnfoodlist.pdf

Good luck !

I'd recommend joining one of the Facebook groups - there are many. This is a good one for tips and general support - https://www.facebook.com/interstitialcystitisnetwork/

I’ve been taking this AZO for quite a long time, @Sunny866— and pumpkin seed oil is also very good from what I understand.
The AZO I’m kind of discouraged by, unless it’d be really awful if I didn’t take it. In the beginning I took 2 in the AM, 2 in the PM, but now I take 2/day — so a bottle of 72 lasts quite awhile.
I have intersticial cystitis so I take a med called “Elmeron” but I can’t tell any difference from that.
It’s all discouraging, isn’t it?
i buy the AZO on Amazon US.

Just a tip - if you've been taking cranberry for your UTI symptoms, please stop ! It's the worst thing for causing flares - that and Vitamin C. Good luck !

I’ve got this. It lessens a lot if I drink juice instead of water

I've had botox injected into my bladder. It helps to some extent, but it now takes longer to empty my bladder!

Had the gp actually sent off several samples (fmu is best as technically is should be more concentrated) to the lab to see if the can grow any cultures to see if there are any small amounts of infection that aren't being detected by a dipstick test?
If not insist the do this. results should be back in a week or so.

@ShippingNews why is cranberry juice and vit c bad for it?

@Painintheback yes several times and also by the maternity unit when I was pregnant, nothing came back from the cultures.

They are both notorious for causing flares. I know it's common for people with UTI's take cranberry , but for anyone with overactive bladder / interstitial cystitis , it's the worst thing you can take. Vit C is also notorious for causing flares because of the acid content.

https://www.ic-network.com/should-ic-patients-drink-cranberry-juice-no/

I was very stressed about poss tolterodine side effects but I only really noticed a dry mouth. Also, sometimes I struggled to start going for a wee. I only took it for about ten days and then I could tell the flare up had passed.

What tablets have people been prescribed for urge incontinence please?

Definitely look into Mast Cell Activation Syndrome and overactive bladder. I find my symptoms improve a lot on a low histamine diet. Also I think someone else recommended Quercetin, and I find ginger very good too, if I've eaten some foods high in histamine. (just slice up fresh ginger and make a tea).

https://www.histamined.com/post/overactive-bladder-read-this-mast-cells-and-bladder-function

You can lessen the acidic effects of vitamin C by using a buffered vitaminC formulation. Solgar have a good one.

also lessen the acid of cranberry by adding bread soda to the drink. There are packets of cranberry sachets in the chemist for uti which are specially buffered.

having a think about topical oestrogen (Hrt) can also be very useful. Ovestin cream is prescription, so have a chat about that to your GP. Oestrogen deficiency can cause thinning of the underbeneathsies and can lead to uti. It’s a symptom of the perimenopause.

cranberry preparations have been scientifically proven to help with flocculating the bacteria present in the walls of the bladder to form lumps big enough to pee out. if you use a spoon of bread soda in the cranberry juice you are reducing the acidity.

low histamine foods are a good idea also. Fewer raw tomatoes, some chard greens, melons and ripe bananas etc.
There are lists of low histamine foods... they might surprise you how supposedly “healthy” they are, but they should be avoided.

Just an update for anyone who is also suffering with the same. I went to see a private urogynacologist who advised me to use boric acid suppositories twice a week, a vagina oil called victory oil and prescribed me hiprex. I also cut out caffeine, alcohol and fizzy drinks. Safe to say my symptoms have gone! I will slowly start introducing caffeine and alcohol again, wasn’t too much of a fizzy drinker so I don’t mind that. I think the vaginal dryness was causing a lot of my issues.

This is interesting OP,since this thread I have treated myself for thrush internally with a pessary and used cream and now use YES cream daily - so basically the same treatment you have and I have been loads better. Also continued to use the magnesium spray too.

@MrsPelligrinoPetrichor which thrush Pessary do you use?

Canesten

There is some evidence that anti histamines and drugs for an over active bladder are linked with an increased risk of dementia. Not all scientists agree.