hey, does anyone get uti's frequently?? i... - Endometriosis UK

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hey, does anyone get uti's frequently?? im getting this a lot and think endo is aggravating my bladder in some way. any info would be great

gillyjo profile image
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gillyjo
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sarabobs profile image
sarabobs

Hi I've spoke to both a urologist and a gyne( both of them don't think there can be a link) about this as I suffered from reacurring utis for 4 years and I've even had my bladder and some tubes stretched in the hope that would stop them ( the op did work for 6 months and the infections have started again). I have found though that after nearly 12 weeks after my first lap I've not had a single uti ( touch wood). Hope you get it all sorted soon frequent uti are horrible and really effect the quality of life.

brighteyesjas profile image
brighteyesjas

So sorry to hear you are going through this, endo by itself is bad enough let another to have recurrent uti's too. I have suffered since feb 2008 with recurrent uti's, prob had about 100 in that time. I too had an op to stretch my bladder and tubes but unfortunately that didn't work for me, it got that bad my urology consultant decided to try a relatively new treatment which involved self catheterising and injecting antibiotics directly into the bladder, that did not work either. I have been seen by 4 different consultants none of which can find out why this is occurring and at the last appointment after being diagnosed with endo through a lap that I had to push for I questioned if the uti's and endo could be linked. Urology are saying it would be easy to say so but can not guarantee that as yet. Due to me having a similar uti problem between the ages of 7 and 9 my gynae seems to think it could be possible link. Both consultants are now going to try and work together on this hopefully.

hknight profile image
hknight

Hi girls, sorry to hear you are going through this, I know just how painful they are. I had 4 bad urine infections last year, and the doc said there wasn't a link, but when I had my laparoscopy in november for severe endometriosis, the endo was wrapped around my urethers, which I really do believe was the problem, touch wood I haven't had one since, but I am still waiting for my period to return from zoladex. Fingers crossed they find out the cause for you, as the endo pain is bad enough without having a uti on top of it XXX

gillyjo profile image
gillyjo

hey thanks for all your answers girls, im going to go back to my doc n request another appointment from my gynae to look further into this. your feedback has been very much appreciated xx

Beks04 profile image
Beks04

I think that it is interesting that Sarabobs said that a Urologist and Gynaecologist said there was no link! I work in Urology and I can assure you that endometriosis can not only affect the outside of the bladder, but can also infiltrate it, just like with the colon. The only way to diagnose endo within the bladder is to have a cystoscopy (a camera is inserted into the bladder via the urethra) under a general anaesthetic so that biopsies of the bladder wall can be taken. This is a procedure that the Urology dept should do, not the gynae.

Hope this gives you a bit more info which may be of use.

gillyjo profile image
gillyjo

thanks ever so much beks04, endo has already attacked my bowel so it attacking my bladder is the last thing i need!!! the discomfort is really getting me down now x

bophead profile image
bophead

Hi,

All my problems started over 2 years ago with pain in my left side and the doctors kept finding mild utis and kept telling me it was this and repeatedly giving me antibiotics because I was 'in so much pain' !!. I was going to the toilet a bit more than usual but I have suffered recurrent UTIS in the past and didnt really have any of the usual symptoms. Eventually I was told it was kidney infections not utis as I was in agony and because it was so bad I went private to see a urologist who performed all kinds of tests which all came back negative and a cystoscopy which came back clear, although I have just read what Beks said about the endo being able to infiltrate the bladder and my cystoscopy was 17 months ago 4 months after all the problems started, so it is possible there was nothing to see then.

After that at really bad times I was passing water every 20 - 30 mins and getting up in the night at least once to go the toilet (bearring in mind when I was experiencing this I was only 26) and every 1 - 1.5 hrs at good times, kept being told there was no real infections there but theyd give me antibiotics anyway!

All kinds of tests were done with no results apart from a blood test which showed quite high ovarian levels (whcch the doctor repeated twice but then didnt really do anything about) and told me to tell the gastro as they would certainly find it interesting!

I was sent to a gastro?? who did a CT scan which they said showed a cyst but it was a normal monthly cyst and that was that, I told them about the going to the toliet in the night and going so often and was told 'well the best thing is to just not to drink after about 9pm at night'

I was eventually sent to gynae and having gone in for a lap just under 2 wks ago they found what my consultant described as most certainly severe endometriosis, a cyst on each ovary of just over 5cm each, severe scarring and adhesions on my pelvis, around my tubes and behind my womb.

Other than the pain the problems with my waterworks has been the other major symptom I have suffered and I also suffer recurrent cystitis.

I would definately ask for another referral to discuss it with your gynae again or even ask to go to another gynae if your not happy with the one you are seeing, I know that I was given the option of 2 hospitals and chose where I wanted to go this is something that is offered now that you can state a preference, and even another referral to a urologist. Don't let them fob you off, I was for over 2 years and it has had a huge impact on my life and my degree.

I definately believe that suffering with uti's etc is related to endo and I have read that these symptoms are related to endometriosis.

Hope you get sorted out soon xx

gillyjo profile image
gillyjo

hey bophead, im def oing to take this further as its really getting me down now, like you im at the loo about every half hour to 45 mins and up 2-3 times during the night which is exhausting me!! so far my doctor is giving me antibiotics and has tested me for diabetes (negative), will def ask for a referral to a urologist. thanks again xx

salsaem profile image
salsaem

Hey Gillyjo,

Im having the same problems and been prescribed antibiotics for years for uti's and kidney infections. I have mild endo though have symptoms on a daily basis and was told last yr that i have adhesions on my bladder. I have never been referred to urology and asked my GP again a few wks ago about my constant urinating ( usually at toilet about 7/8 times at night and every 20 mins through day) and exhaustion and she said "one thing at a time" as I had a lap last wk. Im appalled that if the med profession see no connection then why am i not being referred to Urology? Im going to have to force the issue I guess, with my GP. Hope you get some satisfaction gillyjo.

Thanks

x

gillyjo profile image
gillyjo

yeah ur def right salsaem!!! my doc isnt the problem - hes actually brilliant its getting a referal that will be a problem :( like you, i will fight my corner on this. i really hope you get something sorted soon, theres nothing worse x

salsaem profile image
salsaem

Hi Gillyjo,

I saw my GP yesterday for a sick line and she told me she was referring me to Urology as had read my medical notes and realised the UTI's had been an ongoing issue..Woo hoo!! I just started taking cranberry tablets just incase this is the answer to the problem lol. Hope you can speak to your doc Gillyjo :o)

x

Katt profile image
Katt

Hi

Reading all your answers sound so familiar to me. I went to GP about a month ago with same issues, particularly permenant cystitis and getting up at least twice in the night. If I don't get to the toilet quick enough in the day even though I only need to pass a little bit of water I wet myself and my bladder feels so full! My GP said that urine is clear so no sign of infections but prescribed me antibiotics which don't seem to have much affect. I'm not sure whether to puch to see a urologist or not? It is so frustrating that the consultants don't talk to each other more and make links between symptoms x

gillyjo profile image
gillyjo

hi katt, i def agree with you on that one one, there def seems to be a lack of communication between departments, as you say, if they were working together things would probably be linked and result in quicker treatments. i get that really full bladder sensation to the point of feeling so full that im actually in pain :( its exhausting being up half the night too x

Helen40 profile image
Helen40

Hi gillyjo , you may like to get hold of a copy of endometiosis a key to healing through fertility and nutrition by Dian Shepperson , check Amazon , the book advocates no wheat no dairy in order to lessen the many symptoms of endo with a view to relieving many , the book is comprehensive and thorough with case histories from many ladies , maybe you might like to consider trying this option , no wheat no dairy isnt as bad as it sounds honestly ,a bit of research etc , there is even a recipe book from one of the other endo charity websites with recipes etc , gluten free bread , and other types of milk are available , almond milk is really nice , hope you can solve your problems soon , the book does state that bladder and kidney problems are associated with endo ,Moët me know if you want an more info , best wishes

Helen

gillyjo profile image
gillyjo

thanks very much helen40, i will look into getting a copy of this and giving it a try :) x

littlestar profile image
littlestar

I have suffered with endo alot.I had the mirena fitted nearly 2 years ago after last lap.It has failed.Have had constant uti,s since xmas which I have now been told aren,t uti,s but endo either in the bladder or sinking in from the outside.Am having an investigation of this soon.

gillyjo profile image
gillyjo

hope you get it sorted soon littlestar, its drivingme bonkers!! x

yes i get utis to! its not fun to be burning a lot drink cranberry juice always helps i need to talk to my doctor about the utis again to.