Recurrent enterococcus UTI or IC?

Posted , 12 users are following.

Hi,

I'm hoping someone can shed some light on my situation because I'm getting to a very depressed point and seriously affecting my mental health!

A year ago I started a new relationship and ended up with a very painful UTI, blood in the urine, incredible painful! It was only the second I've ever had in my life. Took antibiotics and all cleared up fine. About two months later, again after sex with my new partner I ended up with an equally as painful one, again antibiotics kicked this one - first tried trimethoprim and then nitrofuratoin when that didn't work.

Again few months later I got another. This one wasn't as bad, no blood or stinging just frequency and twinges. Luckily I knew earlier than the previous two what was going to happen and was put on nitrofuratoin again. Since then I have had a further 6 UTIs over the course of a 6 month period.

They all stem from sex. I was put on daily trimethoprim that didn't work. So put on nitrofuratoin as a prophylactic after sex but I have just ended up with yet another one and this time nitrofuratoin doesn't seem to be kicking it so quickly. It's been over a week on them and I'm still getting twinges.

Worth noting that cultures were never run on my initial two UTIs, presumably because with the blood I was just treated ASAP.

Further 3 cultures - 2 have shown nothing, I presume because I started self treating, and the last one showed enterococcus.

Both myself and my partner have been tested and nothing found STD wise.

I'm at my wits end. I've tried cranberry, vitamin C, olive leaf extract, cysticlean, charcoal, d'Mannose, antibiotics. The lot!

The UTI symptoms I now get are different to my initial first two. I feel urgency but not stinging. There is a dull ache on my bladder and what can only be described as a spasm in my urethra. It spasms and almost goes from the bottom all the way up to my bladder in a sharp spam which then makes me need the loo.

- could this be IC caused by the initial UTI?

- am I now resistant to nitrofuratoin as that appears to not be treating it?

- is it an enterococcus UTI that just never went away and keeps coming back?

- I am now taking probiotics but is my immune system just out of whack with all the antibiotics and that's what's causing it? Just before I met my partner I was in hospital on IV antibiotics as well so could that have caused issues?

- my partner uses shampoo to wash down there (!) - could this be a reaction to that rather than a UTI per see?

PLEASE can someone shed some light or help me work out what I can try? I'm losing the will to live here. I don't drink, put off having sex, dot want to go anywhere in case I get twinges, it's ruining my 27 year old life sad

2 likes, 22 replies

Report

22 Replies

Next
  • Posted

    Hi Belle , sorry your suffering so badly , l was very similar to you and it went on for years , finally l could not bear another moment of it , l went to the doc,s and demanded they refer me to a uroligist , they did refer me which was a massive relief in its self . I had tests which are invasive but not as bad as my imagination thought they would be , everybody l met in the urology dept were so kind and we even laughed on lots of occasions. They found out in the end by a simple blood test that it was IC and not cysistis IC as now been renamed painfull bladder syndrome to stop the confusion between the two . I take amitriptyline 10mg and ranitidine 300mg every day , since November when l started this treatment l have been pain free for the first time in years . Dont drink cranberry the urology nurse told me its advised against because cranberry contains acid. Look online there is lots of imformation on diet l changed my diet radically and l think its helped along side the drugs. I also had bladder installations every week for 13 weeks which line your bladder so the skin is protected from anything which might irritate it , hence the need for a strict diet . Look online and speak with your docter , you will have to wait for an appointment but you can change your diet now.

    I hope l,ve been able to help , your not alone and there is hope of controlling these symtems and living a normal life . Take care , best wishes Winifred

    Report Reply
    • Posted

      Hi,

      So IC can come as a result of cystitis?

      Just wondering because mine is only ever from sex this past year and so very depressed at the thought this might have caused IC!

      Report Reply
    • Posted

      IC is a form of cystisis in it self. Its gives the same symptoms. Only it does not go away. There is no cure. It is inflamation and soars on the inside lining of the bladder. Leasions. Sex will aggravated along with many acidy foods
      Report Reply
  • Posted

    l started with ic symptoms post csection, woke with catheter in and a lot of pain, following day catheter out but felt typical bacerial cystitus, and l d have a few in past, easily cleared with anti,s,  The nurse put it down to post op symptoms, so didnt test it for 2 days and it did show bacteria symptoms, anti bs cleared it up. Going home l was unwell, blood clots found, more anti bs and ejector pills, Then the ic symptoms, aggrevated by menustration and had become heavier, also intercourse, lifting heavy objecects, sometimes spontaneious. Went on for many years, with gyny tests treatment, hormonal ones, no improvement, finally got referral to urolgists had cystascope and ic diagnosed, prescribed amitriptylene cimetidine, supplaments, diet to some extent, less acid, and it has settled it 90percent. Its inflammation without bacteria found in urine samples, though you can at times get a bacterial cystitus on top, the researcher dont really know what causes ic, maybe auto immune, or allergic response to something in urine or envoirament, like other inflammatory conditions they dont always know cause, some get after surgery, others not, some have had bacterial cysitus prior, l guess others might not have. Many do have other health probs related to immunity allergy, fibro, allergic rhinitus, general allergies, but dont think any officially accepted cause.   l did have anti bs immediatley prior to ic symptoms, and a few courses in the past for bacterial cysitus, but really not many at all, less than ave l guess, some have lots of anti bs and dont get  ic. even when anti bs for bacteria cysitus, l used to get trimethoprin,  if that didnt work kefalexin, later research showed some put on one kefalexin a day helped symptoms, speculation there ws some bacteria deep in bladder wall that didnt show in urine samples, now many try that regime as urologists advice, l used a daily one for a couple of years, did seem to help, but l got a bit of gastritus and nausea, maybe a connection or not, but stopped taking it just in case,  l and many know the feeling, suffering restrictions, sex life badly affected, drink maybe aggrevates, more unreliable for a social life, affects on partners family and it does affect phycalogically, as a result of affects or along with them.  l think you probably need to see urologist, most do a cystascope, most find easy done as day patient an hour or, they look inside with camera to see if ic. or other probs. There is usually waiting list for urolgists, and some gps reluctant to refer, but if it goes on just keep at them for one, or if in position to do it a private consultation would speed it up, But if there is a blood test now that diagnoses it all the better. Glad to hear your doing well Winifred after inastallations, Good luck to all
    Report Reply
    • Posted

      Hi Lynne & Belle , l think I C & cystisis are not linked they just both effect the bladder but its worse for a lC sufferer if she gets cystisis because of the effect on the lining of the bladder . I agree with Lynne that there is a link with the immune system , l have lichen scelerousis , a nasty skin disease that causes the skin down below to become raw . l also have an underactive thyroid , a lot of women on the LS forum have also talked about this link . The problem is that there is very little research going on in this area . Its good we have these forums to exchange our ideas for making our lives better and also its good to know your not alone . I have a strict diet , no sugar , a limit of only one cup of tea a day ( bliss ! ) the only fruit l eat are pears and blue berries , all the others set off the IC . I dont eat wheat ,salt , spicy food or any processed food . I can eat roast dinners and have the odd glass of champagne , wine does not agree with me anymore sadly . This may all sound extreme but l feel better and the nagging pain l always had in the right side of my stomach as gone and l can pee without being in tears , l,ve also lost weight which is a great bonus . I think with the right medication and some life style changes plus care when having sex eg always wash after ,no soap down there , l use aqaeous cream and make sure your partner washes without soap , plus plenty of lubrication all has a very good chance of being well . Try not to stress to much as stress always makes this kind of thing worse , l know its not easy as stress is so great for us all . Take care girls x

      Report Reply
  • Posted

    Hi,

    Yes I guess my issue is that diet doesn't seem to affect it. I've been trying Uva Ursi and that helped for a few days but now doesn't seem to do anything

    I'm wondering if it's just a bacteria that's not going away!

    Is there anything I can do in the meantime whilst I wait for urologist? Nothing diet wise seems to help.

    Report Reply
    • Posted

      Hi Belle , l think you should stick to the basic,s , cotton knickers , drink loads of water , stay away from spicy foods and caffine , you can always take a painkiller and a hot water bottle helps . Also not too many fruit drinks they are too full of acid . It might be simething altogether different to what you think you have so l wouldn,t take anything to try and cure it yourself you might make things worse if your worried go see your G P .Hopefully you wont have to wait too long for an appointment .Also avoid wearing jeans you need to let the air circulate down there. Take care x
      Report Reply
  • Posted

    Hi Belle..

    I too was on antibiotics on and off for almost 2 years for urinary tract infections my cultures always came back with something in it....I was going to the bathroom all the time and it only hurt me when I peed ...My urologist put me on probiotics. ...you should stay on the probiotics I think they take a long time to work...my urologist was getting more frustrated than me so on one of Mt appointments. .he said I think I know the problem...he said "I think you might have an overactive bladder..I want to try something" so he put me on a medication called "Myrbetriq" I have been on them for almost 3 months (that's how long it takes to work) and I am starting to feel normal again....I think andrew overactive bladder sometimes mimmicks a urinary tract infection...I hope this helps you and I really hope you get some relief.....I am still taking my probiotics and will continue to take them because I feel better while taking them...good luck..

    Report Reply
  • Posted

    Hi Belle

    I've just been told I have stage 1 enterococcus UTI.  I recognised the symptoms and so have caught it earlier than last time in January when I was so ill.  Because I've got in quickly I am taking four drops of Oil of Oregano and will monitor how I am over the next couple of days. The person who runs my local health shop recommended this and I had already researched what kills the enterococcus bacteria.   The doc gave me some penicillin to take too which I will reluctantly take if the Oregano Oil doesn't work.    Maybe you could try taking it every day in a smaller dose to see if it keeps the infection at bay.  Taking anti biotics is a minefield.  I've been on them 5 times in the last 8 months and would try anything to not have to take them again.  Good luck. 

    Report Reply
    • Posted

      Hi Sue, any luck getting rid of the enterococcus uti? I experience urgency and frequency. I was diagnosed about 3 months ago when they did a urine culture. I was on 3 rounds of different antibiotics: macrobid, amoxicillin and septra or bactrin based on sensitivity test but it didn't clear up. I tried absolutely everything. All natural treatments: uva ursi, colloidal silver, garlic, cranberry, juniper, oregano oil plus probiotics. I eat healthy and I drink lots of water. I am desperate and frustrated, this is impacting my life terribly, I postponed 2 vacation, no sexual life, I don't know what else to do. Please, please let me know if you managed to treat it and how did you do it.

      Report Reply
    • Posted

      Hi Tina,  Sympathise with your condition.  The antibiotic I was given, once the urine culture showed it was enterococcus bacteria,  was Nitrofurantine (sp??).  It was like a sledge hammer. I reacted badly to it and went to A&E.  But it cleared it.  Since then I have been clear of blood in urine and UTIs.   I bought a PH testing kit.  This shows the PH of urine.  Whenever I get symptoms I test my urine and if the PH is above 6 I immediately start taking bicarbonate of soda or one of the over-the-counter products for cystitis.  It sometimes reads 7 which is high.   I take a PH test every day until the PH reduces which is accompanied by a reduction in symptoms.   The bacteria thrives in high PH conditions so when you change the PH the bacteria die off.  I could be wrong about why this works but it does!   I haven’t needed anti biotics for 18 months now.  I would say I have had symptoms about 4 times during that time and each time I’ve managed to nip it in the bud.  Good luck.

      Report Reply
    • Posted

      I didn't enter this forum in a while but I just wanted to reply to fern question. I battled the infection for a long time. I might have had it for many years before being diagnosed through the culture. As you probably read my post above it was enterococcus and I tried all types of antibiotics given by my doctor. After each treatment the enteroccocus culture count went lower at around 40% but antibiotics did not work at eradicating it. After a few weeks it would go right back up to 100%. I started reading all studies done so far on this bacteria and possible alternative treatments. I learned that enterococcus is responsible for all " interstitial cystitis " and that the condition doesn't actually exist but is the bacteria creating the symptoms.

      I also learned that enterococcus has the ability to form biofilm around itself for protection. Biofilm it is very hard to kill and eliminate and I also learned that antibiotic alone can't destroy biofilm. By the way, biofilm can't be tested but when an infection is present for a long time there is always biofilm. I started searching for biofilm disruptors and I found some. The best one I researched is "interface". I ordered it on line, pricey but I had no choice. I started taking it together with natural antibacterials. The idea is to take the interfase to eliminate the biofilm but at the same time to kill the bacteria. I chose apple cider, horseradish, garlic, onion, ginger, cayenne pepper. So I started making my own cocktails with the above ingredients and I would drink it daily several times a day while taking the interfase. I also made some drastic changes with my diet where I gave up lots of animal products including red meat and dairy and replaced it with a mostly plant based diet and whole foods composed of beans, grains, greens, fruits , nuts and seeds. Absolutely no sweets, actually for sweets cravings I would eat cranberries and dark chocolate only. It was the hardest thing I ever done but I was desperate to get better and that's all I had in mind. I did this for almost a year while I continued taking the interfase and the antibacterials, I went through several bottles of interfase. After about a year I went for another test. Enterococcus count was down at 5%. Not completely gone but that was the lowest so far so a great achievement considering previous treatment with antibiotics failed.. My doctor said that I should continue doing what I'm doing. So I stopped the interfase because it can drain the body of minerals but I assumed that biofilm was already destroyed so I just continue taking antibacterial supplements as I described, and recently added herbal teas , juniper and bearberry which I read are very good at fighting enteroccocus. I am also taking turmeric, oregano oil, cranberry, bee pollen and goldenseal supplements. Overtime I discovered that all natural antibacterials work best when taken together. Besides the interfase formula what also helped me the most was the apple cider. It has amazing results at fighting any type of bacteria or viruses. I am now free of symptoms so I am procrastinating having the culture checked again since nothing bothers me anymore but once I will I'll post an update of the results. I hope all of you find a way to get better and while I am not giving medical advice I am happy to answer any questions.

      Report Reply
    • Posted

      Forgot to add that I am taking a probiotic every day to help rebuild friedly bacteria.
      Report Reply
    • Posted

      I am posting an update to my original post above that today I received my culture test result and it's no longer positive for enteroccocus. However, just a few days back I started experiencing some urgency so I thought I was having a flare (months after feeling ok), that's what prompted me to go and have the the test done. So the urgency I think it's related to the irritation of the bladder as a result of all the antibacterials that I am still taking. I will continue taking them for a while just to make sure that this horrible bacteria doesn't return. I read that it has the ability to " hide" deep into the bladder tissue waiting for when the environment is favorable to start attacking again. I will start adding herbs that help reconstruct the bladder wall like marshmallow root, etc.

      Report Reply

Join this discussion or start a new one?

New Discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.