Constant bladder/urethra discomfort a...

Constant bladder/urethra discomfort and recurrent UTIs

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Kirstieok

Dublin, Ireland

#1 Oct 26, 2010
Hi, please help I am now running out of solutions. Almost two years ago I was diagnosed with a UTI. I had recently met a new partner so it seemed quite natural. Before then I had only ever had one UTI
a few years back which was quickly cleared-up after a course of antibiotics. This time round however, the antibiotics did help the symptoms but I didn't feel completely cured afterwards, I still had the feeling of urgency and discomfort/burining feeling in my urethra. I gave numerous urine samples to my GP which all came back negative and was told that it was probably my bladder still feeling sensitive after the infection and it would eventually go away. A few months passed and I was feeling even worse, again I gave urine
samples and nothing came back. I was taken in for bladder and kidney ultrasounds which came back fine, nothing to report. My GP then told me she suspected I had intersistial cystitis (IC). She then perscribed me Vesicare and two days later my symptoms were worse than ever before, I was then diagnosed with another UTI
and taken off the vesicare. I then managed to see a consultant urologist who told me she knew the cure, to have my urethra dilated via rigid cystoscope. After the cystoscopy the urologist advised there was no sign of IC and to rule that out. She advised my urthra was a little tight so it had been dilated and that I should feel better within a week. A month passed and I felt no difference, I went back to the urologist who then put me on a 3 month course of low dose antibiotic Trimethoprim, taken once a day. After another couple months I went to another consultant urologist as I was still experiencing the same symptoms, again I gave a sample which showed up another UTI and was given Ciprofloxacin 500mg twice a day for 5 days and also put on Nitrofurantoin 50mg once a day which I have been taking now for a year. I have had tests to check whether I am retaining urine which sometimes show considerable risidual and on other occasions almost nothing. For a month I also practiced intermitant catheristisation twice a day however this seemed to aggrevate my symptoms and I never noticed a considerable amount of risidual urine left after I'd passed water. I have just finished receiving bladder instillers once a week for 6 weeks which I don't feel have made a great difference, last week my symptoms got worse again and am convinced it's another infection. I'm running out of options now and can't continue this way. The nurses suspect I am run-down (with the cold) which may have spurred this UTI I have at the moment. It just feels like it has been constant for so long and I can't see the light at the end of the tunnel. I can't drink alcohol as this seems to aggrevate it. Also I'm now beginning to wonder whether this may have something to do with my partner whom I'm still with. For a few months we reverted to using condoms and for a while it seemed my symptoms weren't as bad, however a day before this current UTI we tried out sexual intercourse without a condom and I'm paranoid that it's linked. Please please please help, this is making me miserable!
Many thanks,
Kirstie
Danielle

Baton Rouge, LA

#2 Nov 8, 2010
Hi Kirstie,

I have been experiencing very similar symptoms to yours since this past February. Prior to this year I had never had a urinary tract infection. It started with a UTI diagnosis after I noticed some blood in my urine. Since then I have had UTI after UTI, bladder infections and even a kidney infection. I took Cipro for 10 days to clear up the kidney infection. Now I have daily bladder discomfort.

I saw a urologist about it a few months ago, and he put me on a low-dose antibiotic for 3 months to clear up any residual bacteria that may have remained in my bladder post-UTI. Two months into talking this antibiotic, I visited the urologist again because my bladder felt almost swollen and would lightly cramp all day long. At night, it felt like I had to urinate over and over again, even though my bladder was empty. I was given a pain medication for this. Not the answer I was looking for.

The good thing is, no UTI diagnoses for the past 3 months. Just bladder discomfort. However, my boyfriend lives out-of-state and therefore we can't see each other often. Even when I was on my 3-month round of antibiotics I began to experience UTI symptoms almost immediately after sex with him.

I, too, am beginning to wonder if these issues will ever subside. I can't drink alcohol, or even coffee, without almost instant pain in my bladder. I am 26 years old and otherwise healthy and in good shape. I'm worried that next year, when I plan to move in with my boyfriend, I will again develop recurrent UTI's (or worse, another kidney infection) if we have sex. I don't want to have to take antibiotics the rest of my life just to be "normal."

Kirstie, thanks for speaking up. If any one has any possible answers on this, I would also very much appreciate hearing them. This is a daily struggle, and it is painful. It's scary to think that even my urologist hasn't been able to completely fix these problems.

Thanks for advice!!

Dannielle
MEJ

Owosso, MI

#3 Jan 28, 2011
Hi Kirstie,
Your story sounds very similar to mine. I'm 30 years old and have been experiencing "UTI Symptoms" for over a year. I can honestly say I understand your frustration and fears.
Back in 2005 I had UTI symptoms for 3 months during my pregnancy. I was seen by my OBGYN, who swabbed my urethra, and he diagnosed me with Urethritis- which supposedly means bacteria went UP into my urethra and had to be treated with a certain antibiotic.(I was given 3-4 different antibiotics which didn't work before they prescribed the right one)
Well, in Sep. 2009 my UTI symptoms came back. Since I am laid-off and uninsured I don't have many options when it comes to my health, however we both know the EXTREME pain this mystery causes. I ended up going back to my OBGYN who had previous experience with my issue and was tested for STDs and UTI. I was also prescribed the old antibiotic that worked the last time.... but after hundreds of dollars because of no insurance- I was still in pain. Because of finances I had to stop going to my OBGYN and ended up going to a local clinic where I had to explain my story and previous treatments. They wanted to run all the same tests and told me the same thing my other doctor told me- "You have significant amounts of blood in your urine, but no bacteria and very little white blood cells". They prescribed several antibiotics that "helped" but never completely took the symptoms away. I still have a burning sensation when I pee although the pain varies each time. I also feel like my urine is coming out slow or it feels thick. Sometimes my bladder gets so full and sensitive that my stomach expands uncontrollably and I can't even walk without pain. You didn't mention this, but for me I have extreme vaginal dryness too. I'm not sure if this is my own mental/physical reaction, but I'm sure its related.
In any even I'm going crazy.... I can't express my overwhelming emotions over this problem. This situation has me feeling VERY incomplete as a woman because something is wrong CONSTANTLY "down there". I also want to blame my boyfriend of 7 years because I can't think of anything else to do/blame, but of course I didn't tell him this. I just find myself avoiding him or complaining about every little thing during sex which can't be fun for him at all. I was told that I could possibly have IC too, but I just don't believe that. How can antibiotics improve my situation if it isn't bacterial related??
I'm really sorry if you thought I was going to have an answer/cure for you because I don't. I just wanted you to know that your not crazy and not the only one going through this. I honestly thought this before I found your post online tonight. I do have a doctor apt coming up on 2/10/11, so hopefully I can do a follow up of good news.
Good luck with everything.....
justme

United States

#4 Mar 14, 2011
Do some research on d mannose powder. It is a sugar that bypasses digestion and can coat ecoli bacteria to flush them out. Will only help if your bug is ecoli. Not a substitute for a doc and I'm no expert but it helped me
Danielle

Baton Rouge, LA

#5 Mar 14, 2011
I will look into d mannose powder. Thanks for the tip!

My bladder infections and UTI's seem to be under control now. I haven't had any infections in 7 months! I take 2 cranberry pills and one acidophilus pill every day.

I do still experience some noticeable bladder discomfort when I drink strong coffee or any kind of liquor at all. But I am able to drink a glass of wine or a beer or two with no pain now. The recovery is slow, but I can definitely tell I'm making progress!
kokoly2008

Cambodia

#6 Mar 20, 2011
Lichen sclerosus of the urethra is also known as Lichen Sclerosis. This is generally an acquired disease of the urethra. It is not cancer and is not contagious or sexually transmitted. The cause is unknown. Anyone who develop this chronic and often debilitating disease are generally found to have one or more abnormalities on physical exam. Check out this website:

http://www.patient.co.uk/health/Lichen-Sclero...
Kirstieok

London, UK

#7 Mar 22, 2011
Hi Danielle and Mej,
Thanks for your comments, it's helped knowing that I'm not alone here with this...anyone I ever talk to here doesn't have the slightest clue what it's been like. After my last post I visited my consultant urologist early Nov, 2010. He confirmed that my weekly urine samples from the 6 weeks previous were all clear with no sign of infection and so wanted me to try coming off the daily low-dose antibiotic I had been taking. I was apprehensive about this as I was so scared of being hit with another infection, however he gave me an emergency perscription which I could take if at any pont I felt I was getting an infection - which helped ease my mind. Meanwhile, he reduced my bladder instillations to once a month and booked me in for an appt to see him again the beginning of March 2011. Each month when I visited the hospital for my instiallations again they were taking urine samples. I am pleased that when I had my appt with the consultant earlier this month that all the samples came back clear - I've been without infection now for 5 months without taking any antibiotics, this is a real step forward and at last something to feel posivtive about in all this! He also wanted me to come off the bladder instillations however I am worried that my progress may be scuppered if I come off these too quickly, so we compromised at me getting them bi-monthly until July this year - then we can review it after that. I feel lately my symptoms have became less severe and can most days now go about my business without it holding me back. I have my bad days every so often but I am trying to manage the pain as best I can. My consultant advised earlier this month I should take 2 cranberry supplements aswell so I will be trying this also - he reckons that I was caught in a cycle of infections for a long period when I initially caught the first infections over 2 years ago - and as a result my bladder is overly sensitive and I am now more at risk of getting infections, so I should try all I can to avoid them. he also advised that he would diagnose me as having 'Painful Bladder Syndrome' and that unfortunately is something there is no real proven cure for and is very likely to never completely go away. I've came to terms with this and have decided that so long as they symptoms can be reduced to as low/little as possible then I can get on with my life happily. It could always be worse, right?! Again with the alcohol and caffeine I defintely notice this really aggravates my bladder discomfort - same with tomato soup, which I used to love :(.
Again, if anyone comes accross anything at all which helps with the symptoms etc please let us know!
All the best x
Polina

Israel

#8 Sep 21, 2011
Hi all!
I suffer from UTI 2 years already. It ruines my everyday life. Now I have UTI 2 times a month. Can't even count the number of antibiotics I took during this period. Being to 4 urologists uncluding one that supposed to be the best. Tried Cranberry pills. Tried probiotics . Tried uvomin as profilactic antibiotics. Even trying alternative medicine. But here I'm I, sitting in the toilet again and feeling very bad pain. I can't be optimistic already. My husband and me want to get pregnant, but the pregnancy only increases the number of UTIs. So really we suffer both from this.
Why I'm writting this? I need to pass time in toilet...I don't have any hope left. All I hope is to get pregnant anyway because at least this will be smth positive to expect and will lessen the suffering.
Kate

Scottsdale, AZ

#9 Dec 29, 2011
I have a similar problem to y'alls. I started getting bladder infections when I was 16. Same time I became sexually active. Anyway....I kept getting them over and over again. To the point where I got one every two months. The crap doctors I saw never seemed mystified by this, so I thought this was normal. That is until I got my first kidney infection. It was horrible. I could only pee a few drops litterally drops at a time and when I did, I got unbelievable pain in my urethra, my lower abdomen and my left and right lower back sides. I had to call for an ambulance and when I got there the nurses had to give me morphine and finally they Cathetered me and got a sample because my body litterally would not relieve the urine. It was years ago. Anyway I was 18 at the time and after then I started getting them constantly. Antibiotic of all mg sizes and brands. Tried the cranberry juice and capsules. Always wipe front to back, pee ASAP after sex and condom is used. I finish all the meds even if the symptoms disappear. Can you tell I've been through this a few times? Anyway....last time I went in I went to a different hospital and the doctor said " I don't know why no one checked before, but I just looked at your medical history and every time you have gotten a uti within the last 2 years, it's been the EXACT same bacteria to the T. So basically I have had the same uti for over 2 years now. The doctor that told me this said I should go see a specialist but my insurance stopped and I can't afford one. About to months I had to give a urine sample at the ER for other reasons and they not only prescribed me for what I was there in the first place but also for low and behold a UTI antibiotics treatment. I still can't afford to take care of it. It's been so long I can function now a days. I still have frequent urgent urination feeling and when I do the pee feels thick and heavy and looks cloudy. It also burns a little still but I don't have any other pain. Has my body just adjusted to this? Cus apparently from what the doc said, the bacteria hides away in my body and returns to the affected area as soon as the antibiotics are out of my system. That's why the test show the same bacteria every time. He also said that if this doesn't go untreated my limbs will start to swell over time and I can have serious kidney problems and might need a transplant or dialysis. I'm just confused because apparently I have this problem, yet it feels kinda dormant and if this is just fooling me and the day it starts really hurting....will that day be too late? Not to mention my parents who I live with aren't taking this seriously and it's definately not their number one priority. What do I do?!
Courtney

United States

#10 Jan 15, 2012
Hey, I don't know if you're still having trouble with this, but I have a suggestion: PROBIOTICS.

For about 2 years, I had recurrent UTI's (like once a month or once every two months). It would always be the same process. I'd go get a test, get put on antibiotics, I'd feel better for awhile, and then I'd get another one.

One time, about a year ago, I decided to start taking Probiotics after my course of antibiotics. I was UTI free for a year.

I've had a relapse recently, but I had stopped taking the Probiotics for about a month or two before.

I have no idea whether or not this will work for you but, the trouble with antibiotics is that they kill EVERYTHING, including the good bacteria that help fight off the bad bacteria. Make sure you get some with Lactobacilli or you can just pick some out that are meant for Women. They aren't exactly cheap, unfortunately, but they'll probably pay for themselves with the medical expenses you could save.

Good luck.
Jayma

Wheeling, WV

#11 Aug 29, 2012
Hello i had the same symptoms for several years. Uti after Uti! Finally I found a doctor that diagnosed me with interstitial cystitis! I had twelve treatments and take an antibiotic. My life has been changed.
Kirstieok

Dublin, Ireland

#12 Sep 6, 2012
Hi all, it's been quite a while since I've returned to this thread. The good news is my IC has improved dramatically! For over year I received regular bladder instillations which seemed to help a bit, but not completely, during the course of the year I also started to take quercetin supplements which again appeared to improve things further to the point where I eventually stopped taking them and only went for bladder instillation once a month. Unfortunately in March on receiving my bladder instillation I caught another bladder infection, and I went back to square one. It was soul destroying considering the improvement and how great I was feeling. Fortunately my GP acted quickly to get me on a course of antibiotics to get rid of the infection but I was left with horrible IC symptoms. So, I went back into quercetin and slowly started to feel the symptoms become less intense and frequent, I also did my best to cut out food and drink that seem to irritate my bladder. But ultimately I was completely put off going back for anymore bladder instillations as this was the cause of my infection, I didn't want to take to risk again. So, I did a little research into alternative methods and found some recommending acupuncture. To be honest I was pretty dubious, but was desperate and thought there's not much to lose! I found a local acupuncturist who was empathetic and accommodating. For the first month I saw her once a week, then for couple months I saw her by weekly. I'm now just at the stage where I see her once a month simply because I don't feel I need the frequent treatment as much. And it's working. I'm over the moon! I had my first summer holiday abroad a few weeks ago and it's the first holiday in 4 years where I haven't been affected by IC at all, not one bit! Result! I still try to avoid eating, drinking acidic or irritable food, but I'm definitely not as strict with that diet as I used to be. So, I have completely changed my view on acupuncture, and infact I actually really enjoy the sessions. Since starting the treatment I've felt my health in general has improved. So, just thought I'd let you guys aware that it's worth a try...and there is hope! I hope this manages to help some of you.
K x
Julie

United States

#13 Nov 16, 2012
Hello there I am a 40 year old female that since 2008 has had recurring UTIS.....I have been on so many antibiotics and now trying some natural meds for right now with one of them being pro biotics. I am still feeling pain in my urethra area and waiting on a culture which will probably show E. Coli in my urine again...someone please help me I dont know what to do. I am at my end with all this pain and meds are driving me crazy. What more I have been to so many doctors and specialists and if they cant help I hope the Mayo Clinic can help me. If not I dont know what I am gonna do about this. It is literally tearing my life apart I am not motivated to do anything and it is driving me mad...please anyone if you know w doctor or if you know what to do please share...I have had infections since i was little and been tested for every possible thing that could be wrong with me...
you can email me if you like [email protected] you so much..
jules
sestra2001

Rahway, NJ

#15 Jan 13, 2013
Julie wrote:
Hello there I am a 40 year old female that since 2008 has had recurring UTIS.....I have been on so many antibiotics and now trying some natural meds for right now with one of them being pro biotics. I am still feeling pain in my urethra area and waiting on a culture which will probably show E. Coli in my urine again...someone please help me I dont know what to do. I am at my end with all this pain and meds are driving me crazy. What more I have been to so many doctors and specialists and if they cant help I hope the Mayo Clinic can help me. If not I dont know what I am gonna do about this. It is literally tearing my life apart I am not motivated to do anything and it is driving me mad...please anyone if you know w doctor or if you know what to do please share...I have had infections since i was little and been tested for every possible thing that could be wrong with me...
you can email me if you like [email protected] you so much..
jules
Jules, try D-Manose, it does help with E-Coli UTI.
Liza

Victoria, TX

#16 Jan 17, 2013
I know how you ladies feel. I have been having UTI's every single month since September. I went to the ER yesterday and they prescribed me more cipro and then today I had a doctors apt. and he prescribed me more cipro for the whole month. I hate getting these UTI's I have no relief Im so tired of crying almost every night because of this intense pain. I even told the doctors that I think I could have a kidney infection and only the ER doctor said yeah it might be but he didnt let me know if it was actually a kidney infection or not. I have nausea that started Monday and really painful addominal pains that go to my lower back. I always feel the need to urinate. Its not painful but it hurts alot when its full. I dont drink any thing else but water well except orange juice and milk. I have a 2 year old son that comes up to me and says mama your hurting again. I feel so bad because he sees me always hurting and knows I cant play with him too much. I just want to feel normal again.
Cindy

Phoenix, AZ

#17 Jan 18, 2013
Women are especially susceptible to recurrent UTIs, and there are women who are even more vulnerable than others. Aside from medications, you may want to try some home remedies. You may start with increasing your water intake, urinating frequently, cleaning the vaginal area after relieving yourself, and avoiding bladder irritants such as coffee or soda. You may also want to check http://www.bladdermeshlawsuit.us for more information about bladder problems and other possible treatments.
suffering

Stuttgart, AR

#18 Jan 19, 2013
im 21 and ive been getting uti's almost the past 2 years and i dnt kno what to do. i think i probably over 15 uti's and i'm scared this might go on for the rest of my life. i dnt think anybody should go through the pain im going through. i went to see a urologist and he said there's nothing wrong with my urine. it has to be something thats causing but i dnt know what. can someone please help me.
Helen

Los Angeles, CA

#19 Jan 20, 2013
When symptoms do not respond to conventional treatments, a doctor may ask a patient to undergo a surgical procedure involving mesh or bladder slings. If you have been advised to do so, take utmost precaution prior to undergoing surgery by learning the potential risks associated with these medical devices. You may also check http://www.bladderslingrecall.us to know more about bladder slings.
Lauren bee

Sweden

#20 Jan 26, 2013
Hi i understand what all u ladies are going or beeu through, i am 20 and hav had this pain 4 over 9 year nw, i keep getting palmed off with antibiotics because the urine sample is negative, my symtoms are very severe, i have them atleast 4 out of the 7 days, i dont have sex with my partner anymore because of this, i dont drink alcohol and i eat blueberries and drink cranberry juice by the load but nothing helps. i get abowt 3hour sleep at the best because of the pain but no one listens and i am realy depressed because of this! do any of you have any good advice 4 me plz i am at a loss nw!:'(
Irena

Rahway, NJ

#21 Jan 26, 2013
Lauren bee wrote:
Hi i understand what all u ladies are going or beeu through, i am 20 and hav had this pain 4 over 9 year nw, i keep getting palmed off with antibiotics because the urine sample is negative, my symtoms are very severe, i have them atleast 4 out of the 7 days, i dont have sex with my partner anymore because of this, i dont drink alcohol and i eat blueberries and drink cranberry juice by the load but nothing helps. i get abowt 3hour sleep at the best because of the pain but no one listens and i am realy depressed because of this! do any of you have any good advice 4 me plz i am at a loss nw!:'(
Try D Manose. It helps to flush E-Coli out without antibiotics.
I did a research, people recommend Slippery Elm Bark, Marshmallow and D Mannose.
I just bought the D Mannose with Cran capsules. It suppose to also help your bladder and kidney.
I also go and wash after sex, however late it is. And of course, urinate. One of the docs recommended one cup of water before and one cap of water after the sex.

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