Hi folks. After decades of UTI infections, I've been having daily urethral pain that comes & goes but no infection. D-mannose has helped in combating infections enormously, however I'm having a cystoscopy next week to investigate any sinister cause of the pain. Not so worried about the procedure (other than the embarrassment ) but the possible after effects that may be bleeding, infection & residual pain. Can anyone who has had this procedure reassure me please?
Cystoscopy next week - risks of procedure? - PMRGCAuk
Cystoscopy next week - risks of procedure?
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strawclutching
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This may be the wrong forum for your post
I have GCA & PMR. Should I join another forum to post my question? I've read other posts about UTI's on this forum before. I apologise if I'm in the wrong place.
You are right. Lots of this type of post here.
I have had one. No bleeding or infection. They give you antibiotics if you tell them that you are on steroids. Twinges of discomfort for maybe a week or so?
Thanks Seacat, that's very helpful. Did they find anything?
Nothing from the cystoscopy. I also had an ultrasound and they only found a minor cyst on one kidney with that. (Apparently that was insignificant.) They tested my wee and discovered nothing sinister in that either. I was signed off.
Excellent.
Oh I've had tubes up and down all my bits, was always very angry when I couldn't see the screen. Was told that I was the only patient whose BP didn't rise. Just breath!
Hope I remember to do that. Breathe, that is!
indeed even though I am male cystoscope is common way to view urethra & bladder issues I thought “passing” the co2 gas after the procedure to be the most painful part & it was minimal at best I had zero residual effects afterwards best of luck
I didn't know about CO2 gas. Do they put that in first before the camera?
Once the Scope/camera is inserted they can use water/saline or co2 to inflate the area to allow a better view of your bladder etc. co2 is commonly used one’s body absorbs some of it the rest escapes rapidly the way in came in sounded similar to a fart lol best of luck
Something to make you giggle I guess! Thanks Myfoe.
indeed I was standing in line at Target with my wife when some gas decided to “exit” loud and uncontrollable lol
Just as well I'm going on my own then. Thanks for the warning.
PMRproAmbassador
I've had 4 - about 1 every 9 or 10 years. I find the cystoscopy itself painless. takes no time at all.
I have a procedure done to stretch the urethra which is narrow and that encourages UTIs to develop/persist. That bit is a bit nippy but only while it is being done and was far less than period pain! Here they don't use general anaesthesia - the one I had done in the UK they were all set to hang around waiting for the anaesthetist until I told them to get on with it as the previous one in Germany had been done while I was awake. The poor nurses suffered more than I did - just at the thought.
Last time I had forgotten to not take my anticoagulant medication so had to go back the following week - I have never had any trouble with bleeding after the procedure, even with the urethral stretch. I was given antibiotic cover, one dose to take before and one after it was done. They tell you it might be sore after - again, I've had no problems. The last time he'd finished before I even realised. It does vary, tends to be males doing it because urology seems to have a preponderance of male patients I suppose, but they have seen it all before so no need to be embarrassed at all
Like Theziggy I was annoyed I couldn't see the screen, it was behind my left shoulder and I couldn't turn my head far enough!
Do you take a calcium supplement? That can cause urethral and bladder pain - grit forms in the urine for some people. The pain and UTI symptoms improved when I stopped taking one - just vit D and a good diet now.
Thanks PMRPro that's loads of info. You were very brave to dismiss the anaesthetist. I do take calcium, vitamins D & K but it's the Hydroxyapatite formula and since using the D-mannose the infections have been absent for more than a year now. I just have the pain which is a mystery. Now I'm curious how they do the stretch!
Not brave - I wasn't given the option the first time, so as far as I was concerned no GA was normal.
If you want a description:
advancedurogynecology.com/c...
Mine were done using increasing diameter dilators but apparently it can also be done using a balloon catheter.
Thanks PMRpro and for the link.
Not as bad as I visualised! In fact it was over before I realised. I also had an ultrasound. Waiting for another consultation now.
I had the ultrasound first. Did you have any sedation for the cystoscopy?
Does it say Rigid Cystoscopy or Flexible Cystoscopy? Flexible does not require sedation.
It says 'flexible' so I'm guessing that's more comfortable? If a cystoscopy can be comfortable that is.
Yes they use the numbing gel. I felt a slight pain when the camera went in. Fine after that. You should be able to see everything on the screen.
Thanks Seacat.
Really not that bad - about the same as having a catheter passed before surgery. And some people self catheterise.
A nurse applied some numbing?gel. I’m not good at asking questions!
(Just off for my flu and Covid booster. Feeling achy anyway!)
Good luck with those!
Had a one hour wait at the Practice. A long queue that went right round the block!
Oh goodness me! I would have fainted.
It was just as long when I came out. Never experienced it this busy before!
Bet you're glad that's done with for another five minutes. Everyone must be expecting another pandemic.
People are too complacent now!
That's what I think too. It makes the more vulnerable among us having to hide away.
hi strawclutching,
Yes I’ve had this done before because of many water and kidney infections, it stings a bit when you go for a wee afterwards and there is a little bleeding but not much but they normally won’t let you leave until you’ve had your first wee. Most of my infections didn’t show up in the water samples I put in because the infection was in the bladder wall not in the urethra, but since I was put on pentosan polysulphate sodium 100mg (elmiron) I’ve hardly had any infections what so ever, it’s worth having a chat with your doctor, they are expensive but very effective, hope this helps.
Thanks Josie-Anne, I haven't heard of Elmiron. When I suggested interstitial cystitis to the GP he poo-pooed it as a fictitious complaint. I've made a note of that medication, thanks.
I have had two. They are fine, just sting a bit after. They found interstitial cystitis - tiny ulcer thingys on the bladder indicating inflammation. Your GP is an idiot. I would have expected that level of ignorance in 1990 which was around when they were finding out that IC but not now. There was/is a sexist attitude that it's women's imagination which reminds me of comments on this forum that they think we take pred to eliminate wrinkles. It is not even logical - why would there be potential for inflammation of stomach, intestines etc and not bladder?
Urinologists know there is IC because they see it.
If it turns out to be that, there must be an IC forum which will be full of good tips.
Thanks Viveka. I've gained wrinkles since taking Pred! My urologist was much more informed thankfully. He even knew about D-mannose which my GP hadn't heard of.
"he poo-pooed it as a fictitious complaint"
Ah-ha - an "it's all in your head" adherent. Wonder how much that has to do with the fact it is more common in females.? The CDC and the Mayo both recognise it as a syndrome - I'd listen to them before him!!!
I get occasional symptoms of IC - and find that D-mannose relieves them very quickly. Worth a try?
When I had the first cystoscopy the doctor asked how many UTIs I'd had in the past - I hadn't noticed any really - but he said there were signs of scarring all over the lining of the bladder. Apparently that is common in IC. That was 40 years ago - before IC was recognised.
I take d-mannose twice daily as a preventative and it's worked brilliantly. Just the mysterious pain remains. Sometimes it's like shooting pains especially after a bowel movement. Though why that should effect the urethra I don't know.
Have you ever had any symptoms of endometriosis? Or an operation? Both can cause adhesions in the abdomen and strange pains like that!
I had a TVT years ago to lift the neck of the bladder. Effective for stress incontinence after my second child was born. Had a stonking UTI hours after. Still remember the pain of that one from 19 years ago. Also, I had a difficult first birth with 24 stitches after. Five years of intimacy problems later, it was discovered I'd been stitched up wrongly and had to have it done all over again under general anaesthetic. Marriage over by then. So lots of scar tissue I reckon. Both physical and mental. Never had endometriosis.
Possible that TVT isn't innocent ...
I've read about problems following a TVT. With some women the tape had to be removed. Difficult and painful process as the tape had embedded itself inside tissue. I asked the gynaecologist about that 2 years ago but he wasn't forthcoming.
Not sure about the tape - the mesh can sometimes be removed but it is a major performance.
I must try D Mannose. Because I have a sensitive bladder things can flare up a bit after a poo. It doesn't take much to upset it, and these areas are next to each other. If I walk round a bit after it settles down.
Having read your post properly I see you have urethral pain rather than bladder and it's regular but intermittent. I suppose you have done all the food/drink testing things? It would be good to hear whether they find anything in the cystoscopy.
Things I've seen recommended but not tried yet are marshmallow leaf and corn silk. I wonder if kegel exercises would help longer term - blood flow, relaxation. Good luck.
I do Kegel exercises, but find them harder than I used to since muscle wastage which seems to have escalated since using prednisolone. I drink decaf tea and no coffee and only reintroduced chocolate recently after abstaining for over a year which made no difference. D-mannose I find great for keeping infections away but not for pain. It's expensive too. I've tried marshmallow tea twice a day for 6 weeks but it made no difference.
I had one but very easy and not embarrassing at all. Bit painful for a very short time and soon over. No problems after. Found nothing. Don't worry, they put you at ease and talk to you all the time. Take heart.
Thanks Diana.
I have had this procedure done , I was nervous about it , however I was talked through the whole procedure had some numbing gel I really was not in any discomfort , I was shown what was happening on the camera as well .
Thankfully all was well , hope this gives you some assurance because the older I have got the less brave I have become . All the best
It does, thanks Staffieblue. Having your insides poked with instruments when you're old is no fun at all.
I too have have had 2 cystoscopies with hardly any after effects, also a urethral stretch. Interestingly I knew someone who had years of bladder pain and yet no infection showed up on the tests; it was only when her husband analysed her pee carefully in his lab that acute infection was discovered. Pity he didn't do it 20 years previously...........
I suppose lab tests must differ a lot. I've had negative results early on, then around 10 days later a subsequent test shows positive. Of course they tell you to drink more, but that just dilutes the sample (so fewer bacteria) and you end up in agony for longer.
Had this procedure early this year after months of UTI's, anti-biotics etc. Cystoscopy totally painless, not even uncomfortable (consultant showed me screen so I could see what was going on - very interesting!). No after effects other than UTI disappeared. Not sure what that's all about, but very happy. Good Luck.
Lucky you. I just want to know what's going on in there.
It’s normal to be anxious but be reassured there’s nothing to worry about. There are quite a few on here who suffer similar. I’ve had many cystoscope’s (using a numbing gel beforehand) and only once did I get a UTI the following day. It’s over before you know it and staff on hand are wonderful. I’m having bladder installations starting week after next- one per week for four weeks initially. These are carried out via catheter. As you, and others, have said I get the pain daily regardless of lab results. My urologist explained that when you have so many water infections/symptoms the germ can become resistant to treatment and can ‘hide’ within the bladder wall. The bladder installation washes the bladder out and will be carried out as many times as necessary. I’ll be closely monitored for improvement. I’ve had UTI problems for many years and tried most things on the market. I’ve had one per week in the last month. Only one antibiotic works for me and even that is spluttering now. I am a sensitive soul to prescribed meds so perhaps not the best example. Good luck. 🌺
I read about this bladder treatment a few weeks ago. I hope it works for you. One per week? I hope your hospital is close by. I have to taxi each way and one visit will cost £45 (there & back).
I had that done in the office suite. By a lovely female urogynecologist. Those urethral symptoms, in my case, was from estrogen depletion. Local application of estriol cream abolished the problem. Estriol s does not affect the breast like estrogen.
It makes all the difference if you have a lovely clinician. I use Estradiol pessaries twice per week. Helps with the dryness.
I had that done with no after effects.Iam a chronic worrier but it was for nothing.Good luck you got this.
Thanks Hunter.
I have had two cystocopes last one June after several uti's.Procedure was not painful and only took about five mins.Was told there was nothing untoward,good news.I was already on Methenamine or Hiprex tabs two daily.They use these as an antiseptic for your bladder.I was told I have overactive bladder,which I have had for many years.I now am also taking Mirabegron tabs on e a day@I did get uti a few days after the procedure and it cleared up after taking antibiotics.Good luck you will be fine
Thanks Bella. I've made a note of those medications.
Hi strawclutching, it's funny this should appear today as my partner had a cystoscopy last monday and all seemed well until.......
Wednesday he started with chills and fever and going to pass urine about every 20 mins through the night. He developed a temperature of 38 so infection was the concern. He went back to the hospital on Thursday morning and he's still there now on intravenous antibiotics for an infection. Getting better and hopefully out tomorrow, afraid he was an unlucky one as my mum had these every 3 to 6 months for 10 years due to bladder cancer and never had a real problem. Good luck
Oh dear, sounds horrendous. Knowing my luck that'll happen to me. Hope he's ok soon.
He's out now thank you, on oral antibiotics. I am sure you will be ok 🙂
That's good news. They wouldn't do the cystoscopy this morning because my sample showed nitrites & leukocytes, but my samples always do regardless. They said if I had an infection the procedure could cause sepsis. So they gave me a 5 day course of Trimethoprim and another course to take before my next appointment which could be weeks away. I was right peeved. Taxis don't come cheap.
Oh dear that's not good but what you say makes sense. My partner had symptoms of sm infection before the cystoscopy (well I think he did always in the toilet with frequent urination). I think that's why he developed this nasty infection which they warned him could be sepsis
Did they not test a urine sample with a dipstick before he went in for the procedure? Maybe they do things differently at different hospitals.
No, I have no confidence in our hospitals
That's dreadful.
hey! I’m having a cystoscopy done next week too and have the same story as yourself, did they find anything? Hope it went ok!
They sent me home without doing it. My urine test indicated I might have an infection, so it was too risky. I'm still taking antibiotics, and my laboratory urine results haven't come through yet. I have another appointment for a cystoscopy in 12 days, so hopefully I'll be clear by then. Good luck with the procedure. Most people seem to sail through it.
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