Please help - Bladder infection for 2 years
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Please help - Bladder infection for 2 years
I've had a constant bladder infection for 2 years now. Lot of doctors have told me that it's recurrent etc but I know that I haven't had a rest from painful urination, burning bladder or uncomfortableness for one day in 2 years so it hasn't gone away.
To summerise everything..
Symptoms: burn during and after urinating. If I am not on daily low dose antibiotics - constant agony, if I am - pain for 10 mins after urinating and at random times during day. Can't wear any pants except "breathable" pants such as 98% cotton leggings or baggy pants as if i do i have immediate pain that persists throughout the day. Have to drink at least 300 ml water after urinating or bladder burns constantly. Soft drinks, alcohol and tea I must drink in the middle of drinking water otherwise peeing is unbearable.
Tests: ultasound, camera into bladder, widening urethra surgery, bladder pressure and emptying, MRI. All came out "normal" and "nothing serious" and did not help
Past history: I have 3 cysts on my overies, told they are not big enough to cause issues. On antidepressants due to my illness.
Tried: Oregano oil, Vitamin C, changing contraceptive pill, d-mannose, cranberry juice, cranberry capsules, pain management therapy. None helped.
Can anyone help??? Has anyone had anything similar?? Im fed up of living my life in pain and noone understanding how hard it is to make it through a normal day. I don't want for anything now but for someone tp understand what is causing this and make it go away. I'm a 23 year old female and have a healthy diet, am not overweight, no family history of illness or UTI and exercise regularly.
0 likes, 19 replies
jazzyanne Natasha0305
Posted
amkoffee Natasha0305
Posted
I have nothing really to offer but my sympathy. I've had my share of UTI's and they are no fun so I can't imagine having a continuous one for two years! I hope you find a solution. Hugs
emmy18124 Natasha0305
Posted
Natasha, I've had "recurrent" UTIs so I understand completely that it's really one infection that never completely healed. My heart goes out to you for suffering with it for 2 straight years. I'm sure you are beyond frustrated. Mine finally went away after I went on Cipro. You've probably already tried that antibiotic. I have been UTI free now for over two years and recently I drank two sodas pretty close together. The next day I felt like I was getting a UTI! I stopped drinking soda and haven't had that sensation sense. So I really advise you to stop all soda. Also, I know this sounds so weird, but sterilize your underwear. All bacteria/yeast is not necessarily killed and washed out in the washing machine and dryer. Pretreat with hydrogen peroxide (very inexpensive) and pour boiling water on them before washing. Rinse twice so no soap residue irritates you. Take a shower or wash with hot water after every bm. Buy a handheld bidet and rinse every time you use the toilet. Use tampons vs pads if you can because pads hold moisture against you. If you can't, then change them often. Stay away from spicy food, which can irritate the tract. Lastly, take a feminine probiotic every day until you are healed, then once a week. Hope this advise helps!
Natasha0305 emmy18124
Posted
Emma. Thank you for your reply on this.. It's always good to hear similar experiences from other people. I haven't actually tired Cipro.
I've been on Nitro and Trimethoprim but have never been offered any different, they just switch me between the two when a 'flare' happens. I think I will ask for this next time it worsens.
Thank you for your advice too. I have heard someone say theirs stopped when they started to steam their underswear whilst ironing them so I think I will definitely do the hydrogen peroxide and see how it goes.
Thank you so much Emma!
cherie52901 Natasha0305
Posted
Natasha0305, So Sorry to read what you've been going through! I had a similar experience, with several yrs of what seemed like horrific bladder infections--the terrible pain, burning, frequent trips to bathroom, but only to go a few drops sometimes, while at others seeming to go a gallon! Yet the urgency felt the same in every situation--very strange. I tried drinking cranberry juice and that seemed to help at first--maybe when I had an actual infection. Over time I heard about the cranberry pills and tried those for more than a year, but things actually got worse. Eventually noticed that when I had a urinalysis at my GP's office, it would come back as an infection, and frequently cultured to show presence of e. coli--and I would get the "the lecture"-- "Haven't you learned how to wipe properly????" However, if the test was run at my gynecologist's, it almost always came back as "just a trace," which they read as neg. If you read through some of the other comments you will see that the "e. coli" is part of this whole issue many of us have and it has nothing to do with hygiene. What I'm sensing from what you wrote, and I say this from experience, being considerably older, is that maybe you either need to ask to be retested (cysto) or find a new doctor who will do another one, because it sounds like you could possibly have a rip roaring case of interstitial cystitis. I'm not sure if all IC patients have the bladder ulcers which are the obvious diagnostic tip-off, but you certainly have other signs. There is medication to treat it, or the other way to treat it is with dietary and lifestyle changes. Too much stress and not enough alykaline food(mainly fruit/vegs) cause urine to become too acidic, (which causes the burning.) FYI--cranberries/ cran juice are EXTREMELY acidic and therefore one of the WORST choices for sick bladders! Watermelon and water laced with plain lemon juice are much better choices.Even though you eat a healthy diet it may be too acidic for your own particular system. You mentioned drinking soda-- very acidic. Even if the issue turns out to be something like the fibroids that jazzyanne just mentioned--entirely possible considering your age, a diet stressing fresh fruits and vegs over meat and dairy is always a healthy goal to work towards. (I eat meat and some dairy, too, but when I have a flair-up-- I eat a lot of EXTRA fruits and vegs till the pain subsides.)
amkoffee cherie52901
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kylz53698 amkoffee
Posted
kylz53698 cherie52901
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Im interested in this, as I have very similar symptoms to the OP, but after doing a lot of research on IC, I really didnt feel it fitted. I know symptoms arent the same for everyone, but one of the common ones is pain as the bladder fills. I am the opposite, its an empty bladder thats painful and the more it fills the better I am. There were a few others that didnt fit too.
I really wish there was more research into this stuff, and I consider myself extremely lucky that I can still function, I still work full time, I ride my horses, I live a full life, I just get reoccurant UTI's. I know thats very lucky compared to some in this group
cherie52901 kylz53698
Posted
cherie52901 kylz53698
Posted
You know, my pain drove me nuts at times, but mostly at night. Sometimes during the day the pain made it hard to sit, so I sat as little as possible and just went on with my life as much as possible. I can not truthfully say, though, that my pain occurs only when my bladder fills, because my bladder isn't very good at emptying all the way--so I never really know when it it is truly full or empty. It just bugs me pretty much of the time--but not nearly as bad as it used to be and most nights now I can sleep--but it's a very rare night that I can go even 6 hours without having to get up and go. Usually I get up at least twice a night to go to the B.R.
I would think the most important symptom proving IC would be that you keep having what feels like a "normal" bladder infection TO YOU, only the tests come back negative most of the time. Maybe you keep getting "trace" readings--but you don't run a fever, yet still feel awful.
In the long run--who cares what you call it as long as you get yourself to feel better? I would just suggest drinking LOTS of water, and add plain lemon juice (right out of the bottle is fine) to some of it,and try to eat some watermelon every day. Cantaloupe is good too, but watermelon has been my miracle cure on many a bad night. It is the most alkaline fruit available. I see that you already drink some water w/ baking soda--don't know if my approach is better or worse but my understanding is that our goal should be to try to alkalize our systems/urine.
I will just throw out one more bit of food for thought: if you have ever been catheterized, there is research now showing that catheters may be responsible for some nasty residual infections. I had a hysterectomy in late 2004. That was the start of my bladder problems--with recurrent infections/ABs, on and off for years until finally being diagnosed with IC about 3 yrs ago, although it's likely I'd had it for two yrs before being diagnosed. So I think it is something you develop over time...
mel-1987 Natasha0305
Posted
Hi Natasha
I share your pain. I have had recurrent UTIs for over 5 years, initially brought on by sex with a particular ex-boyfriend. I would end up in A&E in the middle of the night with horrendous pelvic pain and peeing out pure blood so they couldn't even dip it. I was always treated with nitro and in between infections I was fine. After we broke up things cleared up but once I started work (I'm actually a doctor myself, which makes my symptoms a lot harder for me to interpret), I was doing 16 hour days and nights,not drinking enough and started getting them again.
I went on prophylactic nitro for a year which seemed to help and also had cystoscopy and my urethra was dilated. Up until now cystoscopy and ultrasound have been normal. Since coming off prophylactic nitro I was ok until 2 months ago when work got bad again and I ended up in a&e. Since then I have had similar symptoms to you- constant pelvic pain, burning on and off whilst urinating, constant sense of needing to avoid my bladder.
The symptoms are so bad I decided to stop full time work and I locum on odd days when my symptoms aren't so bad. I'm also s are to leave the house in case an infection cones on because usually the onset is extremely quick and the pain is so severe I can barely walk. I spend most days and nights with a hot water bottle on my pelvis.
For me the frustrating thing is my urine comes back negative a lot. Previously this was because I was self treating during the night when my symptoms came on so by the time I went to the gp the dip and msu were negative. Another problem has been that drinking lots of water diluted the urine and makes it show up negative, or if I have been to a&e or out of hours the urine culture gets lost because at times I have been in different places around the country!
The main thing is to differentiate between a uti and interstitial cystitis if this is indeed bladder pain at all, which it sounds like it is. I have cut out all caffeine, fizzy drinks and alcohol. I shower after sex and after opening my bowels. Cranberry tablets haven't helped. The hardest part for me is making sure I avoid self treating with antibiotics. I have nitro at home but without a proper urine culture you won't know what the bug is sensitive to, and I have no doubt caused resistance with my pill popping. Another thing to be weary if is the psychological aspects. I understand we feel pain, but our anxieties will make this worse. I am quite anxious that mine is becoming a 'chronic pelvic pain' issue whereby the cause isn't found and us exacerbated by psychological issues eg anxiety. My symptoms are certainly making me anxious and depressed and it is fast becoming a vicious cycle.
I have learned a lot myself from other people's dietary advice, u fortunately advice for uti and IC is different, hence making it very tricky. Try the advice above and see if you can get a repeat cystoscopy and regular urine dips and cultures. I am awaiting another urology referral currently. Apologies if I haven't been able to add much but part of the reason people go online us to share their stories and feel they aren't alone! So now you know that you arent.
Melissa
miriam65408 mel-1987
Posted
Hi Mel,
It's interesting to read a story by a doctor! My daughter's friend was worked a few years in A&E before starting to train as a GP. She never drank when she came to visit - when asked why she said it was habit as she never got time at work to go to the loo! No wonder you had problems!
Can I ask you (as a doctor) to check out my earlier post on this thread about Cipro. So often it's prescribed to girls and women who have these 'constant' infections and yet the consequences of Cipro (and the other quinolones) can be serious, life changing and sometimes even life destroying (not exaggerating!).
You've probably been taught it's a 3rd line defence drug for UTIs but the risks are so great that the FDA have recently ruled it should never be prescribed for a UTI unless the patient has run out of options. They've changed the protocol for many other illnesses as well.
You might like to check out the moderator's pinned post here:
https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305
where he gives links to useful sites. This whole problem is ignored by the NHS and MHRA (I write to them a lot!) and more doctors need to become aware of how dangerous this group of antibiotics really are.
Sorry to pounce on you like this - but if it saves you from self-medding on Cipro then hopefully I've done you a favour!
Take care and I hope you get in control of the UTI blues soon x
mel-1987 miriam65408
Posted
Hi Miriam
In response to your first post, Ciprofloxacin is effective against E.coli. However as a profession we are indeed taught the side effects of antibiotics, including ciprofloxacin. I and mainy others would be cautious in using cipro in general, especially in hospitals as it is one of the main causes of C. difficile which is a hospital-acquired infective diarrhoea, which can have life-threatening consequences.
What I would say is that when it comes to treating UTIs the mainstay of treatment is based upon the MSU (laboratory culture). This outlines the antibiotics the bacterium is sensitive to. I would certainly not treat with cipro before I had tried other antibiotics which the bug is sensitive to which have lesser side effects, usually being nitro, trimethoprim, amoxicillin. I haven't heard of using cipro to 'blanket treat' young women who have antibiotic-resistant UTIs where all else has failed, however. It should be a decision made by urology specialists rather than GPs, however like in all medical practice, there is a risk-benefit analysis going on all the time. Any good practitioner will have to outline the risks and benefits to the patient before going ahead with any treatment plan. The main problem currently is worldwide antibiotic resistance, so I don't imagine cipro will even be effective after the next 10-20 years or so, and then we will have a completely new set of problems altogether!
miriam65408 mel-1987
Posted
Thanks Mel, it's good of you to give such a detailed reply.
My main thrust here is 1. that some e.coli is already resistant to Cipro and 2. this site is read all around the world and it's a common theme on many posts that some doctors reach for the Cipro (for various infections) without first doing a culture.
I'm very reassured that doctors are well aware of the dangers of antibiotic resistance and side effects, however I don't think that many doctors (anywhere, not just in the UK) realise just how devastating the Adverse Reactions (not just side effects) to Cipro and the other fluoroquinolones can be. The FDA have recently issued updates regarding both delayed onset ADRs (can be up to months after finishing the course of the FQ., and also the dangers of possibly permanent damage from them. My bet is that you haven't heard of either of these possibilities - no one has until it happens to them!
I'm currently in discussion with MHRA to try and get FQ PILs updated to match the strength of the US warnings. Their Drug Analysis prints say there have been nearly 9,000 ADR reports for cipro (up to August this year) but add that they know only 10-15% of ADRs are reported.
I could go on (I've studied hard since my husband was badly affected some years ago) but I know I've taken a liberty in writing so much to you already. It's interesting that you mention the next 10-20 years though as the main problem is the cumulative effect of the damage to mitochondria. Very few people get 'floxed' on their first course of FQ, it's normally during a subsequent (2nd or even more) course so many don't know that they are now susceptible - one US doctor is quoted as saying this is a problem that could get bigger than Thalidomide and Vioxx. I'm not at all trying to disrespect our doctors but you would be superhuman to know everything about everything in the vast world of drugs. This is just one small thing that's been around for a while but hasn't been picked up on yet.
My aim in general is to raise awareness, not to criticise.
mel-1987 miriam65408
Posted
Thanks for you reply.
To reassure you, I don't know of any UK doctors (either ones who have treated me, or those I have trained and worked with) who treat UTIs before obtaining a culture unless:
1) a patient has been successfully treated previously or
2) has had a culture previously showing reliable sensitivities or
3) the patient is very unwell and requires immediate treatment
To treate with an antibiotic without cultures in any other circumstance other than the above is absolutely against british medical practice and what we are taught during our exceptional training. I would encourage you to keep raising awareness, as like in any area, there is constant research and data being collected which will lead to better care of patients in the future.
Mel
miriam65408 mel-1987
Posted
Thanks Mel for both your encouragement and reassurance.
Good luck with the UTI cycle. I used to get cystitis myself about once every couple of months when I was just married and worked in a bank (early 1970s!). That feeling of utter dread when I realised it was starting and then the embarrassment of having to walk past everybody to get to the loo every 10 minutes will haunt me for ever! I left the bank after a year - and only ever had cystitis again once, soon after I left! Strange but true.
My Cipro warnings relate to any type of infection, not just UTI. Many men are prescribed it for suspected prostatitis for example. Our campaign is both to raise awareness and also to ask for the FQs to be reserved for life or death situations i.e. back where they belong!
I will keep at it (thanks again) though we could really do with a professional person to join us. My husband was already disabled from MS and his floxing (flouroquinolone toxicity) wasn't too severe as we stopped the pills as soon as we realised something was wrong. Most 'floxies' actually become disabled due to the effects of the floxing.
Take care, and I hope you find a solution to your UTIs soon,