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

Posted , 31 users are following.

joanna46417
joanna46417

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!!

3 likes, 83 replies

83 Replies

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  • nancyo
    nancyo joanna46417

    Posted

    Your story is my story. Five years of Uti's and burning. So many bouts of antibiotics and discomfort. Used Premarin then developed yeast infections as well as Uti's I feel your pain. Kept searching for answers and found the Mona Lisa touch. A laser inserted for a series of three times. Not covered by insurance but I was desperate. It rejuvenates the tissue recthe atrophy and has worked for me. I have one more treatment then once a year. I paid 2500 Look it up. I hope you find relief from this debilitating issue
    • julie50322
      julie50322 nancyo

      Posted

      I guess you are in the USA Nancy? I'm really keen to explore this but wouldn't know where to start here in rhe Uk.
  • nancyo
    nancyo joanna46417

    Posted

    Looked on line... in the UK its called vaginal rejuvenation, says it restores ability to have sex, but in truth its the same thing.  have no idea what they charge, but this place could be worth a call.   Its the best money I have spent.

    The Harley Medical Group - Harley Street 

    Show Phone Number 6 Harley Street, London, W1G 9PD

     

    • julie50322
      julie50322 nancyo

      Posted

      Thank you Nancy, I'll definately check this out.
  • debbie75601
    debbie75601 joanna46417

    Posted

    Wow! Your health issue is very scary to me! I have had a recurrent UTI since summer2015. I have been on a lot of different antibiotics, and it seems to clear, but than comes back, or reappears. I have trouble with a lot of the antibiotics making me sick, so hard to find something. I have been to GP and my gyno, but still having UTI. Have appointment with a urologist this week, and am worried this could be affecting my kidneys. I have had a few spells of the burning right at the bottom of my hoo haw, but it goes away. I have been having several health issues since December, and had my gallbladder out early this month. I kind of feel that a lot of my issues are menopause related, but haven't even seen anyone for that. Still trying to get my health back to normal. Hope we get some answers. Will keep my fingers crossed. 
    • julie50322
      julie50322 debbie75601

      Posted

      Hi Debbie, yes I too hope we all get some answers. It is frustrating. I saw two urologists, neither ever mentioned anything about vaginal atrophy or that my problem might be a post menopausal problem. They just kept repeating that they "see this all the time" no help at all. It was only when I did my own research that I discovered information about vaginal atrophy and asked my go if this could be the problem. She agreed that after examination I did have some atrophy and she started me on vagifem suppositories.
    • chica
      chica julie50322

      Posted

      hi julie,

      would'nt you think they'd be looking for atrophy first knowing our age.

      i had 7 gynnos(national health spain) and they told me to go home nothing wrong.

      i went to a private gynno and she said i had a pelvic mass and needed a hysterectomy.

      what would you do? £££££££

      i dont go anymore.

      i treat myself trial and error.

      i am on Ovestinon ovules.

      same as your vagifem.and doing the pelvic floor exercises also.

      my pain is still there but eased.

      i've been drinking the most disgusting tea called wormwood to dissipate any infestations i may have also.

      how are you feeling on the hormones.

      i.m starting to get my energy back..

  • nancyo
    nancyo joanna46417

    Posted

    First I was diagnosed with intersistal cyctitis by a urologist... 2 years of treatment that was not what it was.  .. finally a urogyn said atrophy, then creams premarin that didn't help, created yeast infections and more uti's that went on for years, antibiotics stopped working, sick all the time, nausea, went to a nutritionist who said the gut could be causing it...  no luck with that.   

    finally mona lisa touch seems to have worked.  I feel so bad for all the itching soreness throbbing and no answers from the medical community.  Women are suffering and insurance won't cover the mona lisa touch.. I think it is criminal that they won't

    • joanna46417
      joanna46417 nancyo

      Posted

      If anyone is still reading this thread...just an update. Was finally diagnosed with vulvodynia causing the burning pain (worse burning and then of course frequency when I have ecoli uti) Started lidocaine ointment saturated on cotton ball and sleep with it at opening of vagina and immediately got relief. It may never go away but I hope so someday. Weaning off aimtriptyline after more than 2 months. Didn't do anything and I gained 15 lbs! Feel awful about that. Hoping some weight will come off automatically when completely off of it! On daily cephalexon antibiotic for prevention of UTI's and definitely don't want to be on that long! So just lidocaine for the vulvodynia and doc prescribed estrogen ring but $150 so have to wait on that. If anyone has any suggestions how to cure vulvodynia would love to hear! Burning is down to about a 3 pain level and there was no pain at Q tip test but Doc said vaginal opening was definitely red. Thanks!😊
    • nancyo
      nancyo joanna46417

      Posted

      Hi Joanna. I am skeptic about your diagnosis. Vaginal atrophy causes redness n symptoms first I was diagnosed with intetsistal cystitis then

      Recurrent bladder infections then atrophy. Nothing helps estrogen Premarin or anything else they gave me. Vulvodynia too. In the end nothing helped. Let me know if you get relief. I hope so. Have lost faith I medical profession. Had Mona Lisa touch. So far so good

    • mere7107
      mere7107 nancyo

      Posted

      Nancyo are you still pleased with the mona lisa procedure?
    • nancyo
      nancyo mere7107

      Posted

      Changed my life. No Uti's in 6 months after 3 years of antibiotics pain was treated for IC but in the end all due to atrophy. Wish you the best. This is a terrible condition saw urologists gyns and finally Mona Lisa has worked so far. No one had the answer until this

  • Downtowntiger
    Downtowntiger joanna46417

    Posted

    I have severe pelvic floor dysfunction. My vagina feels like it is falling out. They treated my "overactive bladder" with Botox and my pelvic floor went crazy!!!! There are trained physical therapists who can evaluate you and do myofacsial release inside the vagina. This isn't a "spa" day-it hurts but can really help.  One dr says I have IC, one says I don't-but all agree about my pelvic floor. There are muscles surrounding the urethra that can go into a flare and cause burning. See if your dr has lidocaine gel for your urethral burning. I live on an ice pack, too
    • Downtowntiger
      Downtowntiger

      Posted

      Could you send me the info on the lab in Texas that tests urine? I live in Texas. Thanks-glad you got relief. Our poor husband's.
    • rhonda35235
      rhonda35235 Downtowntiger

      Posted

      Did you ever find the name for the lab in Texas? I would love to know I too have chronic UTIs I am wanting to try this. Thanks Rhonda
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