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

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

Somehow I am just seeing your post today!  If you are still following this...how do you make those coconut oil suppositories?  I have coconut oil!  I use these this water squares (for use in lunch boxes) that I found - I freeze a bunch of them and about every hour I put one in the buring area - ususally around urethra/vaginal area - at least I can walk around and go places.  My burning gets worse about a week after I am done with the antibiotic...as the ecoli never completely goes away - so my burning is probably most likely coming from that verses the vaginal atrophy - everything looks plumped up in that area because of the permarin cream 3x a week...so I think my main problem now is that for 5 months I have been dealing with an antibiotic resistant UTI that starts to go away after a course of antibiotics but never really does.  Back to the Urologist on Thursday for the next step...UGH.  Thank you for replying 12 days ago ha!

I too had all your issues. Chronic Uti's for 3 years, visits to urologists, naturopaths, acupuncturists and on Premarin. Nothing worked. Atrophy causing all the issues. Mona Lisa treatment changed all that. 6 months uti free after 3 treatments. Changed my life. I paid 2000 out of pocket. Grateful every day

Thanks Rhonda

I'm SO sore and read your post about ice cubes. Stupid question - do you just wrap them in plastic bags (strong) and insert them in your vagina?  I have pain in my bottom as well. No UTI any more, scans showing up nothing, just real pain high up in my vagina. Nothing seems to provide relief.

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

these specialists dont seem to diagnose anything.

so many people say to me not to scan dr google.

i envy them having so much confidence in the medical proffession.

i am sure none of them are in pain.

can i ask you what are your symptoms of ecoli and have you a theory how you got it.

may i offer my experience of amitryptiline.

tread softly and build up if you must.

i got twitchy legs and was sleeping a lot.

First, I'm so sorry for the loss of your husband 6 years ago. That must have been so heartbreaking.  Nice to hear you are remarried and I hope you are happy and that most days you are not in pain from UTI"s!

The more I hear from you the more you have gone through exactly what I have gone through - it's so refreshing to know I am not alone in this, but holy cow I hope I am not dealing with this for years and that soon this ecoli will leave my body once and for all!

The little ice pack squares I use I probably wouldn't need all the time, as sometimes I don't have burning,just irritation.  But I am a baby about this now, so I figure why deal with any discomfort when I can put this cold ice square there!  But there are times/days here and there where it is actually burning and I do need them.  Haven't been on any antibiotics for a week now so I'm just waiting for the burning to come back badly - but so far, just irritation and no other symptoms.

I haven't been able to find on the internet if ecoli can be just in the vagina or if it is just in the urinary tract.  If it can be just in the vagina, I'm wondering if the vaginal atrophy caused the UTI - as it may have contaminated my urine during collection of my urine specimen. The Nurse practioner wants me to go in for a clean catch catherization specimen and haven't decided if I'm going to do that or go the gynecologist April 15th or find a urogynocologist.  I just don't want a male doctor examing me donw there!  It was embarrassing enough having male urologists for both my cystoscopies!  I think though I'm going to buck it up and find a male urogynecologist because I can't find another female one here in the Minneapolis area of Minnesota. It makes sense to go to someone that knows both about the urinary tract and a woman's vaginal issues - being I have the atrophy and a urinary problem.  Love the aimtriptyline 10mg's though...my frequency is better then it has been since menopause started 10 years ago (except when UTI is peaking as I already mentioned).  It must have calmed those nerves down in my urethra, which I think is one of the things it's supposed to do and then that helps with frequency apparently.Is your frequency OK? Did antibiotics clear up the 3 infections you've had this year? Was the infection discovered in cultures but not in the office.  I think there is some connection to mine just showing up in cultures and always just the leoycytes (I can never spell that ha!).  I probably have biofilms too like you.  Have you heard of the place in the U.S. called Pathogenius? Thats the lab that many women with interstitial cystitis are sending their urine to and results are identifiying all kinds of weird bacteria that doesn't show up in standard urine or blood tests. Although they are sending it in for bladder pain, etc. and I don't think most even have UTI's.

I heard too that D Mannose is supposed to clear up ecoli infections.  Now may be a good time for me to try the hourly dose for a few days while I am not on any antibiotics.  I'm not even sure I will ever take an antibiotic again - unless the next doctor I see will actually listen to me and explain that yes I could very well have an antibiotic resistant ecoli UTI!  Has a doctor ever recommended you go into the hospital and have an antibiotic dripped into your blood stream through an IV? I can't imagine that would even work.

It makes sense for you and myself that there is definitely something else 'lurking' in the backround, so it very well could be another bacteria that isn't showing up, which would change the course of the antibiotic because we would need 2 at one time from what I've read.  Also have you heard of an embedded bacteria?  

It sounds like in between your UTI's you feel pretty good? I'm sorry to be personal, you dont have to answer, but with the vagifem, are you still experiencing vaginal dryness for intercourse to be painful?  It's been SO long for my husband and I...years actually - and we'd both like to try to get our intimacy back.  I guess I won't know unless we try if the premarin cream 3x week for 4 months now has helped - it certainly looks healthier down there from the outside ha!

Does this site let people do private messages or where we are able to private message each other?  Not sure how this site works! Can you tell me what other site you go on?  Or maybe you are not able to do that on here without it being deleted or you post being deleted.

Sorry to keep emailing - I just have things to to keep saying and asking questions, but you can stop if you want!  Thank you for all of your info and help and I hope you stay UTI free and that mine nasty one will go away some day soon! 

Have a great evening!

Joanna

The other site I go on is menopause matters. It has a forum and also general information. I believe atrophy can affect the bladder. I think the infection comes from the bladder and it's not in the vagina.

I do have frequency issues which I'm hoping the amitryptiline will help.

The last three infections happened whilst I was away from home or at the weekend. I have test strips at home which showed leucocytes and as I was feeling really ill I took antibiotics which my urologist had given me a supply of. I hate taking so many antibiotics. I'm going to look into the Mona Lisa touch treatment that Nancy recommended. I have in the past had ecoli show up in lab cultures. I'm not sure what you mean when you say nothing shows up in tests done at the office. My surgery doesn't do that. All samples go to the lab.

Intimacy between my husband is good although sadly it does often trigger a uti which I think is caused by embedded bacteria being disturbed. That's what I read anyway. We are scrupulously careful so I know they are not new infections. The vagifem does help with intimacy and we also use lots of yes oil and water based at the same time. It makes things very comfortable.

It is scary and it does cause me an anxiety problem but I guess if there was an easy solution we wouldn't be on these pages looking for an answer.

For the moment I'm infection free. I'm going to look into the Mona Lisa therapy and I'll try and get a referral to a urogynea who knows about post menopausal issues.

best wishes, Julie

joanna, someone may have answered you by now, but if not you can private message. click on the envelope looking icon under the person't name. You can more freely use product names or send links if you want to. Otherwise the monitor interferes and blocks the message.