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!!
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 .
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! 
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
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 .
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
Thanks again!
Joanna
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! 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!
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
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
Joanna46417. I share, almost exactly, all that you have written. I just got all my blood test results back today from my last terrible bout of symptoms as you describe. Everything is perfect. So no diabetes or anything else causing all the terrible burning, yeast infection, etc. my obgyn had me take oral HRT for two weeks then go back to Vagifem (which I've been on for a year except for these last two weeks.) I am finally feeling less pain. Vaginal atrophy is so severe that I have been at my wits end. My next step is perhaps being considered for the Mona Lisa laser process. I've read that those who have had that are finding relief. All we can do is keep trying things. One thing I have done is make small suppository type inserts from coconut oil which I form, wrap in plastic wrap and put in the frig or freezer. It gives temporary relief.
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! 
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
Hi Pat,
I am glad I am not alone with this vaginal atrophy! I'm pretty sure my gyno will put me on oral HRT when she see's I am still having the burning - unless she says it is because of the ecoli UTI that won't go away. I would think she will think I am very red in that area on the outside so must be on the inside - suppose she will do an exam and take a look inside my vagina if she can tell anything. Being I am 60 years 'young' (hehe...I feel much younger ha!) I have read that it is not good for women my age to take oral estrogen. She did mention when I saw her last in December, the 3 month estrogen ring or the tablets that I would insert into the vagina. I do think the ecoli is coming from my vagina, so the urnine culture is contaiminated from ecoli in my vagina. (which is why the urologist wanted to cath my next specimen- but I will see what my gyno says and probably quit going to urologists!)
I tried applying coconut oil to the outside and inside of vagina and it helped for a little bit, but not much and eventually it caused worse burning. I was probably using too much! I also tried inserting a vitamin E capsule into the vagina for several days in a row and that didn't help either. As I mentioned, the little square ice cubes (in plastic and keep in freezer) have been a lifesaver for me! I can walk around with one and have a normal life! I just of course have to replace every hour more or less. I sleep with an ice pack that last for several hours until the middle of the night. Sometimes burning is worse then other days - but it's always there - the worse days are a week or so after I finish an antibiotic so I know it's the ecoli UTI back in full force again. There is a type of ecoli bacteria caused from chickens/poultry that is ressitant to most antibiotics - it is the EBSL bacteria - so I am going to have my gyno test my urine for that - or blood. Maybe I have that too!
I'm glad you have found some relief on HRT and the Vagifem (asing her about Vagifem too) and your homemade suppositories! We do get creative to get relief don't we?
Never heard of the Mona Lisa laser process. Is that for vaginal atropy/drynes?
Yes, we do have to keep trying - I have tried everything OTC - except Monistat - I was tempted, but I have never ever had itching, only burning. Have also tried many many vitamins...was just going to buy Primrose oil and Q10 tonite - read that somewhere. In fact today, in fact yesterday and today, I even inserted wet chamoille tea packets vaginally and squeezed the tea from it but today it caused worse burning - so won't do that again! Hot bath works great and my old faithful ice cube thingy's and I can lead a pretty normal life until this burning goes away. Most days I'd give it a 4 on a burning pain scale, but sometimes when the UTI reaches a peak, it turns into more of 7+ rating. Was a 10 back in November when I went to the ER for burning! owwiieeeee. They sent me home withUTI antibiotics. Never had the burning that bad again thankfully!! Must have just been a very very bad untreated UTI....
Thanks again! Appreciate your replying and your input and advice!
Joanna
Joanna Id try not to use anything internally until you see Dr ,just try and keep pain discomfort down with ice pack there ,don't think using products internally is always best way to go ,I've had this 10 yrs come this July ,yes long time, some have had for a lot longer . I've got a drs app next month ,female Dr have another stab at it .Sad reading the ladies stories here and other sites for these conditions . Wish I had the answers truly do . 😊
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.
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!
Hi Joanna and greetings from the Uk. I could have written your story. I am 60 later this year and I have an ecoli infection/atrophy/burning problem that won't go away. I've had all the usual tests and I've tried vagifem suppositories. I'm starting to think it's something I'm going to have to live with, good days and bad. Three years ago, I was like you and was constantly unwell with ecoli uti, just couldn't get rid of it.I eventually took a daily low dose of nitrofurantoin at bedtime for about two months. It seemed to help. I can now go weeks without infection but sadly they do still happen from time to time. I take a daily dose of cranberry in the form of a capsule and I take a spoonful of D-mannose at bedtime. Cranberry is not ideal as its acidic and can cause bladder irritation but it does seem to help keep the infections at bay. I use Yes oil to soothe the area around my vagina. It's made inUk and is especially for that area. You can google. I try and keep my urine as alkaline as possible as apparently bacteria don't like an alkaline environment, half a teaspoon of bicarbonate of soda in water once every couple of days or lemon in water will help the alkalinity. Vagifem hasn't made any difference not sure if it's because I only use 10mg twice weekly but my doctor didn't think t was a good idea to use more. I dont have a lot of confidence in doctors I'm afraid. I thought I'd sailed through menopause, this has come as a nasty surprise. I also have a burning feeling and the constant feeling of needing to pass urine. My doc has just given me amitrytptiline which I'm yet to try. I guess it helps to know it's not an uncommon problem but it certainly does impact on your daily life. Best wishes.
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
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
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!😊
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 :-(
Hi Julie,
Oh my gosh...you are the first person on 2 support boards I've been on that seems to have experienced exactly what I am! (I just starting posting on this board and the IC Network, although interstitial cystitis I believe is now officially ruled out because I have none of the hallmark symptoms. IC is a horribe painful chronic disease and some of the women on the board have been in so much pain 24/7 that they are suicidal. I can hardly read those posts anymore so don't go there much - I'm )just thankful I don't appear to have IC).
I don't think my ecoli infection ever went away in 5 months now so it doesn't leave and then re-occur, it just wont' leave at all! I think when I am on antibiotics it takes the edge off, but days or a week when done with a round, the burning comes back, but the past month now the frequency is has been good! I am pretty positive its the aimtriptyline the Nurse practioner I saw put me on about 1.5 months ago. Take just 10mg's - she up'd it to 20mg because last time I saw her March 15th, she didn't know my infection had not gone away (urine had to be cultured) so she thought up'ing the aimtriptyline to 20mg's would help the burning symptom I was still having. She found out of course couple days later that I still have the infection, so back on 7 days 2x day nitrofurantinon I went. Just took home dipstick test last night and leocytctes still positive (on low end of marking but clearly showing infection). I have never had a positive nitrate dipstick test and urine is always only positive when it's cultured - never shows positive in the office lab test.
Some days the burning is worse then other days - wondering if maybe something I am eating is causing it to burn worse? Not sure but starting to pay attention. I will try to drink lemon water every day - thanks for that tip!
While I was taking the nitrofurtonin for 7 days a week ago, I was also taking a tsp of D Mannose about every 2-3 hours, sometimes more for about 5 days. That obviously didn't do anything, but maybe I should order more powder and just keep taking a tsp daily like you do. I also just bought some cranberry pills. I'm just not confident anything is going to get rid of this! I was really sick back in November and December, almost flu like and so fatigued - but haven't had those yucky symptoms for the past few months now thankfully.
I will continue on 10mg of aimtriptyline (I sleep great with it, but I have gained some weight like most women do which is a bummer, but I have to try to stay away from carbs and sweets that it makes you crave!) and also the D Mannose and cranberry pills like what you do! I also take a lot of vitamins - echenecia,Vitamin D, Vitamin C, Garlic capsules and 2 different probiotics.
Sometimes when the burning feels vaginal, I think it's the atropy and other times I think it's my urethra - hard to tell because they are so close together sometimes.
The Nurse practioner I saw the past 2 times...also put me on 100mg's daily nitrofurtonin, but she told me to stop after I had just taken 2 pills 1.5 weeks ago when my culture still came back positive so she put me macrobid for the 7 days as I mentioned. Since last November...I was on nitrofurntonin for a week, sulfa trimo (can't recall spelling, it was long) for just 3 days because I was feeling sick during that time, so stopped - after 1st cystoscopy Urologist diagnosed urethritis or urethral syndrome so he put me on doxcycylince for 14 days...then I've had 3 rounds now of nitrofurtoronin. I just hate all these antibiotics and none of them have obviously worked. I feel like I have an embedded bacteria/biofilms that the antibiotics can't get to.
I really don't even know what kind doctor to go to anymore! I suppose a urogynecologist is the best - but hate to go to a male and the female I didn't care for at all unfortunately. Now that I know I still of course have infection where the culture I know will come back positive, I know I have to make an appt with someone! But they will just keep putting me on antibiotics and I feel like I need something else, but nothing natural is working. I suppose you are right, this may be something I just have to live with, but it's scary to know I have an infection in me for so many months and I worry what it is doing to me internally. And, the though of having a cold pack on me all day/night is depressing and so inconvenient...but I know many people have worse things....
A year ago I had gastric issues - gurgling /queasy stomach and bowels were loose sometime and that whole department just was different. I was miserable with it for 3 months - and Doctor just diagnosed gastroenteritis as an exclusion - blood work and urine all normal. I keep thinking it was the ecoli in my intestines and then it went dormant for about 6 months and then travelled to my urethra when suddenly I woke up one day with just frequency, then the burning and then the vaginal atrophy and here I am today. I feel pretty good, just have the mild to moderate irritation and/or burning and the positive cultured UTI's. I probably won't try the vagifem if it didn't work for you, I am not too hopeful either. I can order YES products on amazon, so I will get some oil - but my burning is always internal and not external at all.
Yes, this antibiotic resistant UTI definitely impacts my daily life. My family/friends are used to seeing me put my ice squares things in plastic in their freezers - and I"m not even embarrassed anymore!
I'm so sorry if I've repeated things to you that I've already posted about! I'm just glad to find someone that has things so similar! Do you not have any symptoms anymore? Are your UTI's clear now? Do you see a urologist, or gynecologist or urogynecologist? How long have you been dealing with this? I'm at 5 months! My only menopause bad symptoms were hot flashes of course, but then I had a horrible red burn skin condition that affected my neck and my ankles and right about ankles. It was weird! Had to have ice packs on those areas off and on for a few months around the age of 52. Last period was at 50 yrs. old.
Thanks so much for replying Julie! Sorry for all the questions!
Joanna