Bladder / urethra pain: I was initially... - Pelvic Pain Suppo...

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Bladder / urethra pain

KirstyMcL75 profile image

I was initially diagnosed with a prolapse by my nurse in May and got referred to the pelvic floor clinic. Went last week and it turns out I don't have a prolapse as yet but have a slightly laxed bladder and the symptoms of prolapse/perimenopause. Given pelvic floor exercises to do which I've been really strict with and moisturiser. I would say the pain isn't as bad but it still niggles and feel as if I still need to go to the toilet all the time but unlike before where I felt the pain was all over, now it feels like it's at the urethra. After a uti test 2 weeks ago that was all clear and a swab came back all clear. I can't drink alcohol as the pain is excruciating afterwards, caffeine causes more discomfort and possibly spicy food so for the last week I have avoided them completely. The discomfort is still there but at least I'm not in agony. Ended up running up to the chemist last Saturday and got antibiotics for a suspected uti after drinking 1 can of a cocktail the night before but by the time I got them the pain was gone. I haven't taken the antibiotics. I will say the past 2 months I have had antibiotics for suspected utis which didn't work right away but since April I have always had a repreave from the pain even for just a week but this month it is not letting up at all.

Has anyone went through something similar? To me it feels like an infection but when there's no pain when I pee I am totally confused.

40 Replies

Hi Kirsty, have left lengthy response on my recent post..but like you no bacteria in the urine.. no pain or stinging on peeing..the odour is offensive and i also do not eat spicy/garlicky foods so it must be one can give me an answer even in hospital, no answers

KirstyMcL75 profile image
KirstyMcL75 in reply to Bea61

Ooft, looks like we're going to have to live with it. I'm missing my wee glass of wine at the weekend but with drinking so much water I do feel a bit healthier. Just wish the pain would go away 😪

KirstyMcL75 profile image
KirstyMcL75 in reply to Bea61

Just read your other post. Goodness, I hope you get some answers soon.

Hi have had the same thing on and off for 30 years , I never have an infection, have had cystoscopies , tests galore etc. The only thing that works for me is a good nights sleep, sometimes a sleeping tablet as up 2-3 times if not , then a morning wee and then time your wee s leaving a gap of at least two hours until you feel the urge in your bladder and not your urethra. Make sure you drink water and void at least 150-200 mls when you go.

I have similar problems. I can usualy trace it it food or drink. i have a prolapse bowel into my vagina. Struggling with the situation for years on antibiotics from time. i feel fortunate i was referred to a surgeon who listened to me and am waiting for a colonography scan. Hope you get some asnwers.

Nessie50 profile image
Nessie50 in reply to lemonsorbet

Hi , I hope you don’t think mind me asking but what are your symptoms re prolapse, I had a total hysterectomy 3 years ago and wonder if my bladder has moved, can’t seem to hold my urine like I did and feel a slight burning but in the vagina. I have had vagina checked for bv and thrush but nothing.would they have seen a prolapse?

KirstyMcL75 profile image
KirstyMcL75 in reply to Nessie50

Hi Nessie. At the beginning last April I had a feeling that my insides were falling out. It felt like there was a ball sitting in my vagina. I had burning pain all over my pelvic area. The majority of the time the pain was bareable but then out of the blue I would have an overwhelming feeling as if my whole body would tense up and I'd get lightheaded with a little nausea then it would ease off. At this point the pain was really bad. I would get lower back pain too. Thought it was a uti. At night is the worst.

I have found the the falling out feeling I was getting has died right down since doing pelvic floor exercises. At the pelvic floor clinic my tissues were quite red which could have been caused by dribbling as I really struggle to hold in my pee and I was at the toilet constantly but I've been advised to hold my pee for as long as I can to retrain my bladder as I was going to the toilet for just in case times. I used to go for long walks but now have to stick to anywhere with a toilet. I feel I'm getting better with holding my pee but still have some oops moments.

KirstyMcL75 profile image
KirstyMcL75 in reply to Nessie50

Sorry, realised it wasn't myself you were asking, lol

lemonsorbet profile image
lemonsorbet in reply to Nessie50

Maybe a good idea to say that I am over seventy. I also had a total hysterectomy 40 years ago and other complications in that area. Over the years I had lots of issues (on going) Constipation been on laxitives for years seen different health professionals and often felt I was a nuisance. At last I have been seen by a surgeon who has taken me seriously.

What is a colonography scan? I’ve never heard of it before and I think I need it. Thank you.

Before you have the scan you have to follow instructions. You get a special diet sheet for day before, and liquid to drink before scan to empty your bowel. you have dye injected into a vein. t and a small tube into the rectum to put gas into to get a clearer picture. My appointment is for Tuesday. Hope this is useful for you.

Thank you!

Hi Kirsty. I had a similar problem some years ago. thought i had a UTI, no pain. felt really ill. even went to see a consultant, bottom line, it cleared up by its self. At the moment at 78, have prolapse, never had a gynae problem before, this is why i joined this site. just a nightmare for the last 6 months. So hopefully yours will clear by its self.

I used to have this problem I use a supplement call D Mannose you can get it on Amazon but google it and see if it sounds like something that would help…I use to get bladder pain as well and use a concentrated cranberry that I add to water…also google marshmallow root tea and slipper elm pills people with ic (which is a painful bladder syndrome) use this and it too helps…I have found all the pills that the dr.’s would give me either did not help or made mr worse so I went on the internet and library and did some research and these are the things that helped also try yoga it also has been a God send I do hope this helps you as it did me

KirstyMcL75 profile image
KirstyMcL75 in reply to pizon

Thanks, I will look into all that. I stopped exercising as thought it was aggravating it and miss my exercise so much so will definitely look into yoga. Is there any yoga exercises I shouldn't do?

Try Jessica Valant Pilates for prolapse. Lots of effective exercises which are safe for prolapse. Free and she gives lots of encouraging support and advice.

Oh, I'm following her already but haven't done any of her videos. Thank you

I do a dvd by Dustine Miller titled your pace yoga for pelvic pain have a look see again these are the things that have helped me I avoid the dr.’s at all coasts they actually made me worse now PLEASE do not misunderstand I am NOT telling any one not to go to their dr. Just my personal experience I hope I can help…i was in horrible pain for 2 years and these are the only things that helped me take very good care we are all responsible for our own health and what works for some dose not work for others just keep investigating and stay strong

KirstyMcL75 profile image
KirstyMcL75 in reply to pizon

I've ordered some d-mannose to give it a go. Fingers crossed. I've got an appointment at the pelvic floor clinic on the 18th so hopefully it's clear by then but if not a call to my gp. Just keep trying to rule things out myself just now. Keep narrowing things down as time goes on. Scared to have any alcohol just now and have a wedding in 2 weeks so if it clears up I'll try then and if it flairs up I'll know there's definitely something there. GP didn't bother the last time I told her but we are just ruling things out but I'll be asking for a urologist referral if things don't get better. Thanks for your help

Yacoub profile image
Yacoub in reply to KirstyMcL75

Hi..sorry for all as this is so painful. I went to all the specialist, laying down in the back seat because I couldn’t sit. After 6 Dr.’s ,of all Drs my GP tested me for Actinomycetes Israelii. THAT WAS IT! Most Drs hadn’t heard of it. My GP realized she had that on her test but had never seen it. She sent me to a specialist,sorry can’t remember what kind. But she’s allowed to give antibiotics over a long time basis. She gave me 800mg 4times a day antibiotic for a year! For about 6wks of that time I had to go to outpatient and have pic line put in so I could take intravenously. 4 times a day!! It was a very hard thing to go through but I made it. Just made sure I took probiotics w/postbiotic. Real.. yogurt!!Mostly people have this in their jaw???!! Pain from that gone. Tested for it again a yr later and it was negative!! This is just my experience. The dr uses a very long qtip and send to lab. I hope that maybe this might help. You know the Drs mostly hate it when we research on our own. Don’t frickin care!!!! ❤️❤️🙏🏻🙏🏻🙏🏻

JoJo012 profile image
JoJo012 in reply to Yacoub

Hi Yacoub, I hope you don’t mind me messaging you. Can I ask you what your symptoms were for Actinomycetes Israelii please? I’m interested to see if they are similar to mine. Thanks

JoJo012 profile image
JoJo012 in reply to Yacoub

Hi Yacoub, I hope you don’t mind me messaging you. Can I ask you what your symptoms were for Actinomycetes Israelii please? I’m interested to see if they are similar to mine. Thanks

I have been through this, over and over! I was injured by a mesh sling. Dr. Raz told me (UCLA CA) before he retired I was getting urethritis (infection of the urethra) and it may not show as a UTI. I have also been told that scar tissue forms every time we get a UTI. Which makes it easier for the pain to linger after infection cured. My daughter has IC and is triggered by certain foods, especially spicy ones. I read somewhere putting baking soda on the urethra stops the pain. I tried it, 50% helpful. I have been prescribed B&O suppositories for the pain (it works the best. But not great for us. Desperation throws cares to the wind!! I do know, do not sit in a bathtub for over an hour with urethra pain - if there is an infection it will get worse. From personal experience and verified it online. My bladder spasms, hurts sometimes (ache) but my urethra is my nemesis. Also, my pelvic pain doctor just told me that taking D-mannose at least 1000mg is better than antibiotic at clearing infection (from a study he read). I was already taking it and 2 AZO cranberry tablets. I find soda makes it worse every time. I can get by with it once in a great while. But have to drink a lot of water to compensate. Best of luck to you!

I've ordered some dmannose so wish me luck. I'll try anything just now, lol. Thank you

Sure, no problem. Hang in there. Praying D-mannose does the trick.

Hi Kirsty, I've had similar symptoms in the past and they are back again.

I had a urethral diverticulum basically its a cyst on your urethra. It gave me alsorts of issues. There isn't a massive amount of info in the internet about it as its apparently quite rare.

I had this removed, the operation and recovery were an experience to say the least!

Unfortunately I am experiencing symptoms again and an MRI has confirmed it has come back again. Im assuming I will have to have an operation again!

It may be worth seeing a urologist and getting an MRI scan to check for this.

Hope you can get some help xxx

Hi Beth, going to try the dmannose supplements first and if they don't work I'll push for the urologist. Before the pain was all over my pelvic area but not I've narrowed it down to my urethra. It's just so difficult to speak to a gp just now without waiting weeks especially now I'm not having the same pain as I was

I have severe pain in my pelvis at times. Feels like its so full of pressure my pelvis could break! Its horrible. I really hope you get some relief xx

If you can find a herbalist shop, there is a Chinese ‘ Clear River Tea’ that really calms the bladder and urethra. I swear by it. It contains Cleavers, Crampbark, Goldenrod Leaf, Marshmallow Root, Bearberry leaf, Yarrow Flower, Dandelion leaf, Cornsilk and Juniper.

You may have an embedded UTI. Have the doctors actually cultured your urine? Have you seen the results? I’d get a copy.

Sorry this pain is irritating your urinary tract and you’re in pain.

I swear by the marshmallow root and slippery elm

KirstyMcL75 profile image
KirstyMcL75 in reply to pizon

I'll try the dmannose and no luck look into them too. Honestly I'll try anything now

Marshmallow root is sold by frontier co op on line I use 4 told per qt jar and drink it 3 times a day with two slippery elm capsules I get them from Amazon I hopped it helps also cranberry extract

Hi Kirsty, when you had your UTI test done at the doctors was it just a dip test that they did or did they actually send it away to a hospital lab for testing? The reason I ask is that quite often the dip tests that doctors do are incorrect. I have had several dip tests done now that’s showed negative for an infection but when I insisted that they sent it to a hospital to be tested properly in a lab they found that I did have a UTI. You may also find you have something similar to what I have. It’s where you produce too many mast cells/histamine from eating certain foods, drinking certain drinks or come into contact with external things that may cause you allergies. When you overproduce too many mast cells or histamine in your body it causes inflammation and I get this inflammation in my bladder, which then causes my pelvic floor muscles to tighten up causing me lots of pain and tension inside my vagina. Very painful and an uncomfortable pressure feeling inside your vagina that feels like something is kind of leaning on your bladder. I was put on a special diet to help narrow down what was causing my bladder inflammation by the Specialist I’m seeing at Imperial and several rounds of different prescription histamine blockers. It’s helped to calm my pain down I would say by at least 50% and I don’t have as many bad flare ups now. Might be worth looking into for you?

KirstyMcL75 profile image
KirstyMcL75 in reply to JoJo012

Ohhhh, good to know. Yeah was just a dip test. Will mention that to gp if next one comes back neg. I have the 4th Oct off work so if the pain isn't away by then I will definitely be phoning gp again. Just taken first dose of dmannose. I still have antibs here from last weekend also as keeping them for when I'm in agony again but don't think they'll work as had them before which took the pain away for a week before it came back. Good thing is now I don't have pain anywhere else but my urethra for over a week as advised to use sudocrem on my tissues so that has definitely helped. Vaseline helps a bit but like today I went to mcdonald's with my daughter and had irnbru and I'm sore again so now I'm adding anything but water to my list of things causing pain. I don't have tummy or back pain. The pain can seem worse when my bladder is full and is a relief when I let go. It doesn't burn when I pee, just the constant niggle around my urethra. I used to get it on and off, just this time it's not giving up.

Lor7 profile image
Lor7 in reply to KirstyMcL75

I have have that, irritation around urethra making me feel I need to pee even just after I had been. It drove me mad and I learned to ignore it. Had ultrasound and cystoscopy but nothing showed up. Consultant said he felt it was likely a pinched nerve, not a major one just a tiny one and there was nothing he could do!! Was very despondent but had to live with it then around two years later and having emptied my bladder, I realized there was no irritation, thought it was a fluke but all was fine from then on it just disappeared. Then I had abdominal pelvic surgery four years later and here I am suffering with a dull ache along the scar line which presses on my bladder, hard to explain, slight irritation in my urethra and it wakes me up usually every hour or two. I’ve seen the best gad all tests, bladders instillation snd pills and they can now only offer Botox or sacro neuro modulation. Neither of these really appeals and I’m just hoping one day it’ll just stop as before. Sorry not a lot of help but keep up hope there are many tests and treatments you can try yet.

I tried Dmanose as my Consultant’s team recommended it. It didn’t help me but I know it definitely helps others. I was told to try it as they found the E.coli bug in my bladder. Apparently Dmanose is good to help clear this particular bug out of your system. I hope it helps you. Mine is the opposite to you. The more my bladder fills up the better I feel. My pain starts up after I’ve emptied my bladder.

It’s very possible that you may be histamine intolerant, which is why alcohol and fizzy drinks are flaring you up or you could just have a deep routed bladder infection that’s embedded into your bladder wall lining, which is what I had also. The Professor I’m under at Imperial Health explained that it’s very common to get negative results from urine sample tests done if it’s deeply embedded. He found my infection by performing a cystoscopy on me and taking a bladder biopsy to test.

KirstyMcL75 profile image
KirstyMcL75 in reply to JoJo012

Sounds about right. Let's see how things go but I'm not letting up and just living with it. I want my life back

Good for you. Right attitude. Me too! 😊

I have a few points to add to this discussion - some may be helpful... I have had bladder pain with UTI's for a year or three now. I also have a couple of prolapses.

It is certainly correct that dip stick tests and in fact, laboratory culture tests do not always produce accurate results. I have been seeing a wonderful consultant who told me that at least 50% of tests in each category are incorrect.

If your GP dip stick tests show negative but you are sure that you have a UTI, do try and persuade them to prescribe an antibiotic.

I have been trying to understand how I could have so many UTI's when my personal hygiene is (she says modestly!) second to none. My consultant explained that chickens (in particular) have been fed antibiotics and the end result is that the birds have become immune but the bugs have run rife. Lovely.

I am currently on the second round of three-months of low-dose antibiotics and they are suiting me well - no breakthrough UTI's (I had many antibiotics over a 12-month period, averaging one every three weeks at one point).

I was found to have an unusual bug and it is thought that it became embedded in my bladder wall (the bugs apparently hide within the folds of the bladder and pop up again when the antibiotic coast is clear).

I have also been put on Hiprex, which are (huge!) tablets on which only small-scale trials have taken place but there are good results so far. I am sure that my consultant would not have offered them to me if they were useless. I will soon finish my second three-month low-dose antibiotic and will try Hiprex alone. This should prove one way or another if they are indeed helping. I am hoping that Hiprex should help as it provides a coating of the bladder wall, making it more difficult for the bugs to get a hold again.

My consultant did recommend D-Mannose too but when I rang a manufacturer to ask about the stuff and mentioned that I do not have an embedded E-Coli, I was told that D-Mannose would not help me as it works only on E-Coli. If you know you have E-Coli, perhaps try D-Mannose.

I have also been told that I retain urine, so need to ISC (use Intermittent Self Catheterisation) several times a day, which is not as bad as it at first appears but is a faff. If one can't empty the bladder fully, the remaining urine goes stale and becomes a breeding ground for bugs. My bladder is often painful when just emptied as I have to try to clear it completely. Mind you, we are told to ensure our bladders are fully emptied and conversely, train them to not need emptying so frequently, so we can't win!

Trying to help myself, I bought an Elvie trainer which helps with pelvic floor exercises, although I think there may be a better product out there (haven't tried the other so can't comment)and this has definitely helped with my prolapse. I no longer worry that I will be dragging my uterus around Sainsbury's floor behind me...!

The only other point I can mention is that I have mild diverticulosis perhaps worsening and wonder if the pains I think are all bladder-related are in fact coming from the stomach etc. My pains (both of them) emanate low down in the vulval area and rise upwards past the bladder to the stomach. I just wonder if I am conflating the pains. Who knows?! Trying to work out what is what is a jigsaw/minefield. I may or may not get there in the end...

I hope that anyone reading this gains a little insight or ideas that may be helpful for them.

Im 51 and have a history of polyps in my uretha. My doctor removed them during surgery but whenever I have them I experience the type of pain you are referring to.

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