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[EleanorB]

Hi

Any fellow irritable bladder/urogenital atrophy symptom sufferers seen this article -

https://www.theguardian.com/society/2018/dec/12/researchers-call-for-new-uti-urinary-tract-infections-testing-method?CMP=Share_iOSApp_Other

I have had uti type symptoms waxing and waning for about 2 ton3 weeks - no incontinence, just urgent need to go and feeling of pressure. On the toilet all the time. I am treating with vagifem 4 times weekly and this is making some difference, also just started hrt. However this came on so suddenly after using a bog standard sex toy for penetration (ironically trying to combat VA by increasing blood flow to the area as I am single) that I was a bit sceptical when my gp assured me post urine sample sent to lab that there was zero infection.

Having read this article now even more curious/ concerned. Anyone else in this boat? Or treated with antibiotics despite a negative result and experienced resolution of symptoms?

I was prone to irritable bladder prior to meno but these symptoms are way, way worse.

[Maryjane]

I have known about this for years & occasionally say that testing is pointless.

The problem is it's such a big problem world wide, ATM treatment is high dose/ long term antibiotics.

There are new hopeful “ cures” on the horizon with trials starting  in 1-2 years hopefully. How testing was set up all those years ago never was & is not fit for purpose.

Lack of oestrogen can also make the bacteria take hold more easily as the trigone area & urethra dry up allowing bacteria to take hold.

[EleanorB]

The idea of high dose long term antibiotics makes my heart sink. I'd just replace ongoing uti symptoms with ongoing yeast infection symptoms and violent stomach upset. I did actually have a uti the first time this happened a few months ago and antibiotics cleared it up. The menopause seems to entail a never ending battle for the correct treatment in an area GPs know little about. I see my gynae privately and can only talk to her every few months so am left at the mercy of gps who even if wanting to be helpful are over cautious and terrified of scare stories re hrt and ignorance re vagifem.

[suzysunday]

Eleanor, EXACTLY the same thing happened to me a few weeks ago.  I have va and had to come off hrt while pmb was investigated.  I also used a dilator to help va like you said and I did get cystitis.  This cleared quite quickly but then for weeks I had uti symptoms just like you and sent in 4 urine samples that were negative. But I was given 3 courses of antibiotics, 2 of the awful nitrofirantein.  I don't know why when the results were negative.  I didn't really understand my symptoms were VA related.  It's taken a few weeks of local hrt for things to settle.
 

[suzysunday]

I've just read the article and a bit confused.  Are they saying we have an infection or is it va mimicking uti symptoms?

[Katejo]

Hi

Any fellow irritable bladder/urogenital atrophy symptom sufferers seen this article -

https://www.theguardian.com/society/2018/dec/12/researchers-call-for-new-uti-urinary-tract-infections-testing-method?CMP=Share_iOSApp_Other

I have had uti type symptoms waxing and waning for about 2 ton3 weeks - no incontinence, just urgent need to go and feeling of pressure. On the toilet all the time. I am treating with vagifem 4 times weekly and this is making some difference, also just started hrt. However this came on so suddenly after using a bog standard sex toy for penetration (ironically trying to combat VA by increasing blood flow to the area as I am single) that I was a bit sceptical when my gp assured me post urine sample sent to lab that there was zero infection.

Having read this article now even more curious/ concerned. Anyone else in this boat? Or treated with antibiotics despite a negative result and experienced resolution of symptoms?

I was prone to irritable bladder prior to meno but these symptoms are way, way worse.

  Hi Eleanor B  I was about to start my own discussion on this when I saw yours so decided to add  to it. I have read the article myself and it ties in completely with the view of the Urogynaecologist who saw me last month. She did her Phd on chronic UTI/bladder irritation. i later discovered that her PhD is freely available online. I could post you a link to it. She also told me that urine tests were pretty pointless because they are so unreliable. After leaving her I thought of another question. Since VA symptoms are so similar to UTI ones, how are we supposed to know which we have (given the unreliability of the urine tests)?

Back in September I had an apparent cystitis attack. The GP gave me one AB which failed and then 2 others when the test indicated resistance to bacteria in the first. The 2nd two also didn't work very well. At that point in time, I started trying Vagifem. Initially a very good impression for the first 2 weeks and then variable (possibly to do with only having enough to use it 2-3 times a week).

All was good until mid october when the cystitis symptoms returned. Then I tried bicarb of soda  dissolved in water and it appeared to work well. It returned in late november at the time of my referral to the hospital. The consultant did take a urine sample despite her misgivings. I didn't hear back from that so I am assuming that nothing was found.

Then this week, the cystitis returned again . This has made me suspect that the problem wasn't cleared and that it might be an infection due to aching all over and feeling a bit hot.   Yesterday I decided to go ahead and take the emergency Trimethroprim which the hospital doctor gave me. It is a 7 days course rather than the 3 day which GP's tend to give. The hospital doctor told me that these 3 day ones are a waste of time! They don't complete the job.

She offered me 2 options. 1. Continuing antibiotics and 2. Continue with vagifem for now and see if things improve.  I told her that I really didn't want to be on continued AB's. She said that most of her patients give the same response. I agree with the points you have made. I would feel that the problem hadn't been solved but just masked (with side effects). I have read comments by some women who are taking the continuous AB but still having UTI's.

Have you had any side effects from Vagifem? I dropped estriol cream because it made me feel as though I had a UTI. I just can't decide whether Vagifem is doing the same or not or whether it is that I just wasn't using it frequently enough.

Will stop for now because it is getting long but would like any feedback. I have a follow up appt. with the hospital but not until next April.

[Katejo]

Eleanor, EXACTLY the same thing happened to me a few weeks ago.  I have va and had to come off hrt while pmb was investigated.  I also used a dilator to help va like you said and I did get cystitis.  This cleared quite quickly but then for weeks I had uti symptoms just like you and sent in 4 urine samples that were negative. But I was given 3 courses of antibiotics, 2 of the awful nitrofirantein.  I don't know why when the results were negative.  I didn't really understand my symptoms were VA related.  It's taken a few weeks of local hrt for things to settle.

Suzysunday  Very similar to me. Have a look at the bit I was writing just as you posted. I agree that nitrofurantoin is horrible. It spoilt a holiday for me last year. It makes me ache all over.

[suzysunday]

Interesting post Katejo.  It took a few weeks of ovestin alternate nights, though gp said twice weekly.  It's a horrible situation cos I feel so vulnerable to it returning and it is the most depressing, inhibiting condition.  I don't know whether to use dilator for fear of disturbing things, and very afraid of having sex.

[Tc]

Eleanorb  I have the same issue. Always told i had irritable bladder but if I don't drink huge amounts of water or even go a few hours without drinking I get cystitis.i have been like that Since a teenager
 Since having ovaries removed 4 months ago it's got worse.
Urine test negative.
I don't understand why antibiotics are given when they can't pinpoint an infection especially as they can cause thrush.
I believe I'm suffering symptoms of Va
I'm on hrt patches and whilst lubrication is not what it used to be I am not totally dry Things do feel very different down there though and penetration feels weird, not painful but not pleasurable either just uncomfortable .The whole area feels different inside and out and  there is a definite loss of sensation.
I watched my mother and both her sisters end up needing a bladder repair within 5 years of having total hysterectomy with no hrt. It would appear to be preventable but my GP didn't want to prescribe ovestin.
I too am single and have been using a toy to try keep blood flow going (and for fun but it ain't much fun anymore!). I have found that KY is the best for me for penetration as the other well known one beginning with a D seemed to irritate me suddenly. It never has before.
Thank you for having the courage to be so open on here. VA  is worrying for me because of the urinary issues but also the sexual side effects. I feel as though because I am single doctors seem to think this shouldn't bother me. The truth is it bothers me a lot  . When your body suddenly reacts differently to even a few months before it is depressing. It's like something else has been taken away from you but you mustn't complain about it but it also becomes something that is on your mind all the time. Just wanting to be yourself again and have quality of life.
Trying to sort out all the issues of surgical meno without becoming obsessed is proving a real challenge.
Can I ask have you had back ache?
I have but put it down to the operation, oh dear !!!so many overlapping and inter related symptoms.
I hope you get some relief from your symptoms. Take carex

[suzysunday]

So true what you say tc. You just want to feel ok again and like you say have some quality of life.  You have had it really tough from what you say.  I have never had anything explained to me about this from gp or 7 hospital visits to gynaecologists.

[Tc]

It's so frustrating that prevention of VA does not seem to be on the agenda. I know it's not curable but from what I've read it's very treatable and symptoms are somewhat reversible. It also seems to be the case that the longer it is left untreated it only gets worse. Still my GP looked at me like I i was mad when I asked for ovestin!!😳
Going to gynae appt next week. Think it's time I got pro active!!

[CLKD]

Problem is when the urine sample is sent to the Lab., if over a weekend it could 'sit' ....... without being tested until 'too late'.  Also if the patient has already begun a course of anti-biotics, then it may not grow anything.  If it doesn't grow then the GP should treat the symptoms - though not many realise that vaginal atrophy mimics urine infection-type symptoms really well  .  When I had initial problems I would sit on the loo with glass of barley water and a cuppa - I could let the bladder relax and dribble until the pain relief kicked in 

Have you tried over the counter pain relief, I had niggling symptoms at the start of the week so began Ovestin immediately plus Nurofen every 3 hours for a day.  Stopped it I think  . 

I havne't read the article, too tired today  .   Also not many GPs are aware that Vagifem was prescribed at 25 then a few years ago it dropped to 10 [?] so ladies need to use it nightly regardless of what the leaflet says or every other night.

Anyone having problems with the GP maybe ask to 'trial' the product of choice for 3 months and then report back?  Or speak to the Nurse Practitioner who may be more up to date ;-)

[suzysunday]

I'm 60 now and went to my gp 10 years ago with what I think now must have been the beginning of VA, but I got nowhere. I didn't know what va was until I was diagnosed just over 2 years ago.

[Tc]

Ladies the more I'm reading on here today the more angry I'm getting. It's actually an outrage that with a bit of research we have found out information that GPS and specialists either don't know or are ignoring.
Suzysunday did your symptoms improve after treatment?

[suzysunday]

It took over a year for a reasonable improvement. and I was put on tibolone hrt and after 18 months I got post menopause bleeding and came off all hrt while it was sorted, which took over 4 months. I had hysteroscopy which they wanted to repeat as they didn't get enough tissue but I couldn't cope with another, so had another scan where the lining had returned to normal.  While off hrt I got cystitis and over 8 weeks of uti symptoms. I am just using ovestin for va now as too scared for anything else. So it's been back to square one and I have lost confidence.  Tired and stressed and feel like crying a lot. My poor partner has had to put up with a lot and given me so much support.