Recurring UTI: Hi ladies. I am currently on... - Endometriosis UK

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Recurring UTI

Auntyhay profile image
18 Replies

Hi ladies. I am currently on my 3rd lot of antibiotics in 6 weeks for recurring UTI, this is my 4th one in the matter of 12 months and the Dr's don't seem to want to do anything. I was diagnosed with endo 10 years ago and I have had 3 laps, I moved last year and have had to change hospitals and consultants. They were horrible and basically just said changing my coil will solve my problem. They changed it and discharged me. I mentioned my bladder and bowel problem and he did not want to know. I feel stuck at the moment and don't know what to do. I am waking up through out the night and pee about 30 times and day which feels like I have a dagger in my bladder. Just feel like the Dr's just don't want to know. And now with the current situation it's difficult to do anything about it. Feel fed up with it all. ☹️. Anybody else experience this.?

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18 Replies
Fragarach14 profile image
Fragarach14

I get this, i have interstitial cystitis was diagnosed at 15...i also have endo on my bladder however.... i would recommend some cranberry juice mixed with blackcurrant it is nicer than taking yet another tablet :)

Also i find not drinking for two hours before i go to bed "helps" doesnt stop it completely in the night, but it lessens it :)

Auntyhay profile image
Auntyhay in reply toFragarach14

Thanks I will give it a try

Anastasia17 profile image
Anastasia17 in reply toFragarach14

Hi, I have recurrent IC. I take Cystocalm (atm via Amazon, otherwise supermarkets, Boots, etc) because the sodium citrate it contains is what helps. I find, and its a recognised fact, that cranberry juice irritates the bladder even more. I was advised by a urologist to take D-manose (to be taken every day). I have ordered it from Sweet Cure, an English on-line company that also gives advice over the phone (unlike Amazon). I also take a good quality probiotics as the gut's health impacts on the bladder and it makes your immune system stronger. I also avoid irritant foods such as caffeine, tomatoes, orange, orange juice, all red fruits, lemon, hot spices. By keeping a pain diary of my symptoms, I can also see that my IC often correlate with ovulation, before /during periods. ICs are tough as it impacts so much on our life.

Fragarach14 profile image
Fragarach14 in reply toAnastasia17

Never knew that, i was advised by my urologist to keep taking the cranberry juice, as long as i mixed it with Ribena or another juice to take away the acidity.... How strange, i only take it with a flare up, my bladder bleeds a lot :( Not helped by Endo either... Will look into that other stuff, am on permanent antibiotics and would rather not be they make me feel sick :D

Anastasia17 profile image
Anastasia17 in reply toFragarach14

Ouch! It must hurt a lot if your bladder is also bleeding.

I had a recurrent cystitis over the weekend. I have managed to get rid of it by taking both Cystocalm and D-mannose every 3 hours.

Please see below the link to Sweet Cure. I ordered my product last Wednesday, I received it by Saturday. Its worth reading their page as it's packed with info:

sweet-cures.com/research/bl...

IC also interacts with pelvic pain and also with hormonal fluctuations during the month. It could also be a symptom of internal dry skin where, alas, lubrication is needed.

IC is linked to endo as I am sure you already know.

If you keep having them you could ask your urologist for a cytoscopy to make sure there's nothing else going-on.

If you are so often on antibiotics, you may want to take a good quality probiotics as antibiotics destroy all your good bacteria and this, in turn, damage/reduce your immune system which, in turn, makes your body more prone to cystitis/IC. Probiotics will help rebuilding your good bacteria in your guts . You may also want to take vitamin D to improve your immune system (above all as we have to spend more time indoors).

Let's put it this way, I will definitely not be a woman in my next life, possibly a cat! :) :) :)

Moon_maiden profile image
Moon_maiden

Most of last year, although most of the suspicions weren’t actual uti but felt like it, eventually got diagnosed, not by GP’s

Might be worth asking for another referral to someone different.

Hope you get sorted

Auntyhay profile image
Auntyhay in reply toMoon_maiden

Thanks, I was thinking of asking for a second opinion

Hi, I’ve been experiencing exactly the same symptoms for the past few weeks, I’ve been on two different antibiotics but when the urine sample came back they said there was no infection, I was so confused because I was in agony with what I thought was a uti

Hope your feeling better soon 😊

Moon_maiden profile image
Moon_maiden in reply to

Did you get to the bottom of it?

For me it seems to be all part of the endo, potentially fibroids and uterus, but all part and parcel.

At initial appointment with consultant he could see all the times Id been back over the year. At one point GP thought kidney infection, fairly sure it wasn’t. Was very painful at times.

in reply toMoon_maiden

I’ve never got to the bottom of it I often used to get uti symptoms like this before my second laparoscopy after that I didn’t have symptoms for over a year. My doctors aren’t that great but I think I need a referral back to gynae consultant because I’m convinced its to do with the endometriosis but with everything that’s going on I won’t be able to see gp for a while.

Moon_maiden profile image
Moon_maiden in reply to

Not sure how quick a referral would be currently but you can still talk to GP about it. You may even get a telephone appointment with consultant.

It’s the only thing reduced a bit since lap and treatment. Hourly is better than 20 mins. 😂

in reply toMoon_maiden

I might see if I can get a telephone consultation but I’m not convinced they will refer me all I can do is try :), hourly is definitely better than every 20 mins that was me the other wk 🙈

Moon_maiden profile image
Moon_maiden in reply to

Good luck, no reason why they shouldn’t, even if they have to delay due to virus stuff.

Let us know how you get on

Beatriz39 profile image
Beatriz39

I use to have UTI very often, like 5 or 6 times a year... I tried to drink a lot of cranberry juice and the UTI stopped,also in the last 3 years I discovered something called Cystopurine in Boots, they are sachets and they don't have antibiotic but works very good, al least for me and some friends that have tried them. Maybe you can give it a shot, is worth trying...

Jonesy84 profile image
Jonesy84

Hi Auntyhay, sorry to hear you are going though this! I am shocked that the doctors have not referred you? Have they even sent you to a urologist?. My friend has a very painful bladder and gets up numerous times to wee in the night and also during the day. She was referred to a urologist who were able to do a number of test to see how the bladder was contracting etc it defo sounds like you need a urologist to do their investigations. I hope you manage to find relief from it soon xx

Auntyhay profile image
Auntyhay in reply toJonesy84

I have just called my GP as my symptoms are worse they've asked for another sample and trying a different antibiotic. When I mentioned endo I was told it's not a typical symptom but she said we will see what the sample shows and will take it from there..so hopefully they are starting to take notice. Thanks

Jonesy84 profile image
Jonesy84

That’s great to hear. I know endo has a lot to answer for but just thought it would be worth pushing the urology side of Incase it’s not connected. I used to suffer a lot of UTIs but I didn’t have the urgency through the night but during the day was Terrible some days. I had tests done and it was due to my urethra not being wide enough so had a small little op and bingo. Like I say yours is probably very different but your GP should push this. The antibiotics that helped clear it for me was Trimethoprim. Get better soon xx

Auntyhay profile image
Auntyhay in reply toJonesy84

I did have 3 days worth of those antibiotics a few weeks ago but it came back and they gave me a week of nitrofurantoin but they don't seem to help, im not sure which they have given me this time as need to pick them up...I have dropped my sample off so hopefully next week they will have a better idea x

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