vaginal atrophy burning / ecoli UTI won't go away!

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My story is long, so I am going to condense it as much as possible. I just turned 60 'years young'! I've reached out to a few boards for help/advice as I have suffered through self diagnosing my condition for about 5 months now - although I've been to urologists, gynecologist, urogynecologist, Nurse practioner specializing in Interstitial Cystitis, etc. 2 cystoscopies, 2 ER visits when burning started last November...I am circling back to my initial diagnosis back in November of 'severe' vaginal atropy.  After 5 months and 4 rounds of antibiotics for ecoli UTI after cultures, I 'still' have burning (frequency is better after antibiotics, but few days after done that comes back sometimes-oxybutnin did nothing)  I have been on premarin cream 3x week applied to urethra and 1/2 tube - small amount, inserted in vagina. All this time I thought burning was coming from urethra because pain was intense when tube was inserted into urethra for both cystoscopies.  But now I am thinking the burning is actually coming from my vagina and not urethra because I inserted an icecube into the vagina and then I couldn't feel the burning! Is it possible that the premarin cream 3x a week isn't enough and I need the Estrogen ring or patch? Could I be burning still from the atrophy (they said it was very bad) and could the ecoli be coming from my vagina into my urine and showing positive at culutre (never positive in lab, only  culture).  The ecoli infection is antibiotic resistant - tried nitrofutonin, macbroid and sulpa trim...something ??? Urologist now wants me to take a low dose antibiotic every day and I hate to do that if this is all because of my vaginal atrophy.  Sorry for rambling,just so frustrated!  Does anyone have anything to share/help if they have had a similar experience. Nothing is helping the burning, except I live with a cold pack 24/7 - even sleep with one!  Vagisil burned worse! Had all the tests for STD's yeast, etc. I've heard of vulvedonia (sp?)...not sure. Going back to Gynecologist on April 15th.  Thank you so much!!

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  • Posted

    Sounds like Volvodynia . With how your describing it ,look at VVS ( vestibulodynia vestibulitis syndrome ,see if any markers come up . 

     We all mention Ice packs for this . 

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    • Posted

      Hi Marlene, thank you so much for your reply.  I had actually researched VVS, (along with many other things) and I don't have the hallmark symptoms of pain to the touch, (like when gynocologist did a pelvic exam back in December) soreness, throbbing, itching.  In self diagnosing I'm still thinking the vaginal burning is the vaginal atrophy and lack of estrogen (premarin cream 3x week not enough maybe) and then the ecoli UTI which won't go away causing burning.  One of those things I suppose.  But no idea.  Urologist assumes I am just dealing with an antibiotic resistant UTI.  Thank God for the small little ice squares I put against my vaginal opening (used to put against urethra, but they are so close to each other anyway!) 

      Thank you again for replying!  smile

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    • Posted

      Joanna lots say they're diagnosed with one thing but turns out to be something entirely different . I've had heat and ice ,I hear what your saying . 

        It's everyday discomfort . I think lot of it is hormone related to female conditions without a doubt . I wake up with it ,go to bed with it . Not comfortable to live with . AV ,Vulvodynia ,it affects everything in that area ,even the bowels . I've got IBS since mine all began . Stay on drs heals ,only thing you can do ,or pay to see one private . Where are you UK or other . 

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    • Posted

      Hi Marlene,

      I am going to ask my gyno about Vulvodynia when I see her April 15th.  Been going to urologists since I saw her back in December when she said the premarin cream would probably work.  She may be surprised that I am still having burning and this antibiotic resistant ecoli UTI.  I don't have any burning/irritation at the opening of the vagina - so it's further in - but whole vaginal area looks very red and I think it's supposed to be pink! 

      I live in the United States in Minnesota smile

      Thanks again!

      Joanna

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    • Posted

      are you having a problem with sex.

      are you getting any digestive problems.

      i cant offer advise i,m afraid as i,m undiagnosed after 4years.

      i,ve come to the conclusion that something has give out underneath.

      i,ve lost faith in any of the 'doctors,'so through a process of ellimination i will eventually make a diagnosis.

      ecoli uti is new to me so i,ll see what i can find out.

      hang in there

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    • Posted

      Hi Chica,

      Yes sexual intercourse hasn't been a possiblity for a few years with my husband (I know, poor guy...) due to the last time we tried being excruciating pain for me due to dryness!  Yes, I should have gone immediately to gynecologtist and gotten on HRT but I didn't until last November.  I was a bad girl! sad  Unfortunately it all just got worse.  

      Im sorry you have been suffering for 4 years!  Do you have any symptoms of a UTI?  Assuming you have been tested and cultured for that!  

      A year ago,  I had terrible gastric problems that lasted 3 months!  I had an awful gurgling stomach and queasy all the time.  It was awful.  Doctor said it was gastroenteritis.  Didn't  get any  treatment for it  (blood work was normal) and then suddenly after 3 months it all just went away!  Really weird.  But then a year later all of this starts with this resistant ecoli Urinary tract infection (UTI) - I really wonder if I had ecoli in my stomach, then it went dormant for several months, then travelled down to my urinary tract causing this UTI that wont away. Who knows!  But also...vaginal atrophy I've learned causes chronic UTI's.

      Hope you don't give up and keep researching on the internet and getting advice from other women on these forums. I have learned so much the past 5 months!

      Good luck to you and all of us suffering!

      Joanna

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  • Posted

    You sound like you've had quite a traumatic time, its frustrating trying to find the cause isnt it. Especially when symptoms overlap. I have severe atrophy and suffered badly from burning from dryness and friction type burn from any kind of rubbing. Plus regularily splitting of the skin which was very painful. Initially I was on Vagifem which I had to use 20mcg every day just to keep symptoms at bay but any reduction and my symptoms returned. This then moved onto burning and stabbing feeling in the front of my vagina this was diagnosed as Vulvodynia after being referred to a Specialist. I was prescribed Ovestin ( believe Premarin in states) twice weekly and Nortriptyline 10 mg daily for nerve pain and I actually feel almost normal again after about 2 months. I have finally managed to wear jeans once a week again and its such a relief.

    Your symptoms sound similar so it maybe worth looking into Vulvodynia.

    Hope this helps

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    • Posted

      Hi Tracy,

      Thanks for your reply!  You may have read what I just wrote to Marlene - that the burning is inside the vagina and no burning or irritation on the outside - when I inserted the ice cube today -no burning! smile I will ask my gyno about Vagifem - I have a list of things/treatments to discuss with her,but pretty sure she will say its still the vaginal atrophy and it can take months for the premarin cream to work, but I would think after using it 3 x week for almost 4 months I wouldn't still have this burning, but again, it may be because I can't seem to get rid of the ecoli UTI I keep testing positive for - so that and the Vaginal atrophy could both be the culprits!  My Nurse practioner who specializes in Interstitial Cystitis (went to her to rule this disease in or out and she ruled out) did put me on Aimtriptyline 10mg...all that has done though is help me sleep!  Has not helped the burning - but not sure that would help VA or a resistant UTI.  But I love how well I sleep and only get up once to pee! smile

      As I told Marlyne, I am going to ask my gyno April 15th about Vulvodynia - as possible women have different symptoms and possibly I could only have the burning symptom,if in fact it's NOT vaginal atrophy or because of antibiotic resistant ecoli UTI I have.....ongoing as usual - but hoping someday to wake up in morning and once again feel normal down there!!

      Thanks again!

      Joanna

       

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    • Posted

      Aimtriptyline is really the same treatment as Nortriptyline, I agree love the good nights sleep.

      Is it possibility thrush? Ive been getting burning from that, redness but no visible discharge. It seems as its so dry inside no discharge comes down anymore it just sits high in the vagina. The only way I know is my partner gets it, I found I have resistant Thrush. And am now on a course of longterm Fluconazole to clear it from my body.

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    • Posted

      When I read about thrush I didn't display the symptoms other then the burning but you could be right about no reason for discharge. Thought thrush shows up in urine culture or is it vaginal swab? I will google it again. But just finished yet another round of antibiotics yesterday...took home dipstick test and positive stll☹️. Not for nitrates but for leukocytes. It's never positive for nitrates.

      I learned that VA does cause repeated UTI's but not the same one that will not go away! On the IC network I've been told I may have an embedded bacteria. May be paying $200 next to ship my urine off to a lab in Texas that does extensive bacteria testing. Lots of women getting back results of various bacteria not found in doctors offices and they require different kinds of antibiotics. Getting that desperate!

      My husband can't catch anything if thrush because intimacy on back burner for awhile...😢

      Thanks Tracy!

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    • Posted

      I had repeat urine infections when I had fibroids they were relentless but thankfully straight forward to treat. Yours do sound like the resistant kind my sister has those and takes antibiotics longterm to prevent reoccurrences. It seems as we get older our bodies are less able to tackle these infections during menopause. Most people have a multitude of symptoms!

      I was treating the thrush myself for about 6 months every 2 weeks or so after treating it would return. The only sign was darker red insideUntil I got fed up

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    • Posted

      Cont: and told the Specialist he told me to treat then stop all treatment just go to the Dr for a swab and everytime it was thrush nothing visible hust very high up inside no discharge only burning irritation. He recommended Fluconazole 3 times for 1 St week then 1 a week for 6 months! My Dr wasn't keen on such a long course so ive been given 2 months then a review. But its working ive had no thrush since.

      Luckily ive kept going back to the Dr and being persistent to get this far so I can still enjoy intimacy. But its been a painful journey to get there.

      Good luck

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    • Posted

      This ecoli infection I have has never even gone away so it's not reoccurring. Everyday for 5 months I've had irritation and then different levels of burning. Felt generally not well first few months...but vitamins and lots of antibiotics must have at least taken the edge off because the last couple months I feel really good/normal...except for the UTI and irritation/burning 😡. Maybe someday it will go away somehow...I don't even know what kind of doctor to go to! Feels like vaginal burning now but have a uti. Gynecologist or Urology gist? Guess I will try another urogynecologist. One woman I saw had a horrible bedside manner so won't go back. Was so uncomfortable with her!

      You've been on a ton of antibiotics too! There has to be some kind of cure for me!

      Glad you are all well now!😊

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    • Posted

      Its awfully draining being in constant pain and depressing but keep searching for the answers. A new Urinologist sounds like a good place to start. Ive had good, bad and next to useless :-) in the end the youngest one who you would think was the most inexperienced was the best and most sympathetic. His methods were direct instead of keep trying the soft options but they worked. From what I've read your ecoli is probably resistant to the antibiotics, you will either have to keep trialing new ones or take stronger ones. Not cheap I know :-(
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    • Posted

      Hi there have you asked to see of you have a heavy growth of e coli in the vagina as part of your swab investigations? And could be causing symptoms you are describing? My experience is this: I am 33 after my son I had symptoms of uti only once the infection was found in my irne culture eventual the gynaecologist decided to do a vaginal swab and found a heavy growth of ecoli there. It was treated but I think it has now come back as I also experience burning and I've had another swab waiting for results... urine culture was negative.
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    • Posted

      Hi Lula - thank you SO much for your reply.  I am really wondering if what you said could be my problem - I can never really tell if the burning is coming from my vagina or the urethra area - all I know is every day for over 5 months now (Since Nov. 1st) I have been having some level of burning - most often it is mild to moderate. Sometimes after a course of antibiotics the burning kinda goes away, but then I have irritation..and after a week or so off the antibiotic it is the burning feeling again.  Ecoli in the vaginal area could explain the fact that I have never once had burning when I urinate - all these months!  Just the constant burning feeling down there.  I did however have horrific pain/burning for both cystoscopies when they inserted the tube into my urethra - oh my gosh...I had to immediately apply ice. I know now that I obviously had a UTI that would have showed up on a culture, but didn't in their office dipstick test. My ecoli UTI is always found when cultured only.   I am going to a physician ass't in urology who I really liked and met with last November initially.  I think she is going to do a catheter urine catch - to see if it is in fact in my urine - otherwise, I have an appt with my gyno on April 15th and I will definitel ask her to do those swabs for ecoli!  So tired of the burning and nothing works,other then this frozen little ice squares that I put down there where I can walk around. AT night I sleep with a cold pack there as well. Got used to that - doesn't even bother me anymore - the cold takes away the burning.  Even AZO for burning doesn't work.  Usually a prescribed pain med will work, but try to stay away from those and only use when burning is moderate to severe.  It takes the edge off at least.  Something is going on down there!  I've had 5 rounds of antibiotics since November...suppose I maybe just need to be on one longer.  Tried D Mannsoe for 2 weeks! That didn't do a thing....

      Thanks again, please feel free to share any advice for symptoms, etc.

      Appreciate it!!

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    • Posted

      Hi Lula,

      Thank you for your reply. I just wrote a long reply back to you but it was deleted by the moderator and I'm not sure why as I didn't mention anything I wasn't supposed to.  I will definitely ask my Gyno on April 15th to do an ecoli vaginal swab.  That makes sense that this could be the issue. The Physician Ass't I am going back to see on Thursday this week..is probably going to do a catheter catch urine sample.  I usually can't tell where the burning is coming from...either my vagina or urethra. My positive ecoli UTI's are only found when cultured and when I do a home test the leoucyrtes only show positive, never the nitrates. Been having mild to severe burning every day at some level for over 5 months now. Guess it gets better after a round of antibiotics but it has never completely gone away - just goes to mild level of either burning or irritation, then comes back.  I use small frozen ice squares all day for the burning - need another every hour - then sleep with a cold pack at night. Surprisingly I'm used to that!  All these months it has never burned when I urinate - which is unusual for a UTI - however when I had my 2 cystoscopies it was horrific pain/burning when the tube was inserted into my urethra! Now I know I obviously had an infection in my urethra for both procedures.  Not looking forward the catheter collection on Thursday.  Thank you for any more info you can share for symptoms.  I appreciated your helpful suggestion to get swab test!!

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    • Posted

      i really feel for you.

      i know how frustrating it is not to get a diagnosis.

      i've been 4 years with pelvic pain and all the time going to consultants of different disciplines we're thinking none of them have a clue.

      i went to a urologist here in spains nhs.

      he was a gentleman which believe me is rare in this macho province.

      he shook my hand and asked what language i'd like to speak in.

      after all the tests which i didnt think were particularly scientific,he said the diagnosis is chronic pelvic pain and gave me Tryptosol.

      i was so disappointed as i'd got my hopes up.

      i knew all along i had pelvic pain. doh

       

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    • Posted

      I am desperate to find out the problem of my chronic UTIs. I am on continual antibiotics I just finish them and the infection comes back. Could you please give me the name of that lab in Texas. I have tried everything else I want to give that a try.

      Thanks Rhonda

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