HiHi 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)?
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.
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.
Hey all, thanks for your comments.Hi Eleanor B I started using Vagifem to see if it would reduce my UTI's by restoring my oestrogen level to improve the condition of my vaginal tissue. I only started with it in mid September so need to use it much longer to see if I get this benefit. however I have already had a benefit which I hadn't expected. Since the summer, i have had an aching hip and irritation in my groin (left side only and my internal irritation is also on the left side), I hadn't associated this with my UTI's so it was an unexpected benefit. I am about to reply to someone on the FB page who has described a similar experience. Here is a link to the thesis. Have a look particularly at section 1 (p. 34) http://discovery.ucl.ac.uk/1364560/4/1364560_Thesis%2031012_eversion.pdf
Katejo,
I totally agree - how the hell are you supposed to know if it's VA or a UTI? I think that's what worries me most about the article. It suggests that so many UTIs may be going undiagnosed, so am I desperately plying myself with vagifem when in fact it's a UTI. Obviously the situation is complicated by the fact that UTIs are more likely to happen if you're peri or menopausal. I am scared I am treating VA when I should be treating a UTI. And I just want rid of this awful, debilitating, depressing symptom. My young male GP (only one I could get in to see) suggested he wait a month before referring me to urogynaecology (sp?) to see how the vagifem goes. I wanted to say alright for you, you're not the one who feels like you need to urinate CONSTANTLY. I said refer now, it takes forever to get in anyway! I think another reason I am confused is because in terms of my vagina, the VA symptoms aren't that severe at all, slight dryness, itching sometimes but ok, does it make sense that my bladder would go so bananas therefore? Please do send me the link.
I don't think the vagifem is causing side effects. That said who knows, maybe, ironically, I am treating the UTI type symptoms with vagifem and it IS making it worse. I don't think so, if I use them every day it seems to make the UTI type symptoms almost bearable and I haven't noticed any other side effects. Sometimes the symptoms ease up for a few hours and I think I'm done with it, then it's back.
TC and Suzy - I understand your misery re wanting to feel like yourself again. I long for that in so many respects since hitting meno. If I had a time machine I'd go back and REALLY, REALLY enjoy my young, hot flush free, sharp brained, memory in tact, normal bladdered body. The things I took for granted.
TC, the single thing is so depressing as I just can't fathom how I could get in to a sexual relationship with someone now. At the moment, if I had sex it's pretty much guaranteed the symptoms will escalate and I'd be unable to have sex again shortly ish after, which, at the beginning of a relationship, is fairly likely. I really don't relish the highly sexy(not) prospect of immediately relaying my bladder issues to a new partner. It's not that I'm particularly prudish or shy around things, it's just really, who wants to talk about their bladder at the beginning of something? I don't know where you are in this whole trajectory, but seeing as I'm being brutally honest, in the spirit of being helpful, re your loss of sensation. At the beginning of peri, having always had really sensitive nipples, which were a major erogenous zone for me, they lost almost all sensation. I was devastated. And then eventually it came back. Not quite to the level it was before, but on good days it is. So there is hope. Oh well, At least I can have a laugh to myself re talking about my nipples on the internet. I never saw that coming.
MaryJane thanks for your comments. It's because of your and your daughter's book (excuse me if I am getting this wrong and it's not your daughter who wrote the book! Total meno brain) that I know to moisturise my vagina every day. The info you have got out there is invaluable.
Katejo,Yes I did mean the FB VA group. There are some more articles by the same consultant available here. I haven't explored these yet but they are on similar issues. She was very helpful when I saw but she still thought that one shouldn't take Vagifem daily for more than 1 month before reducing the frequency. That surprised me. https://www.researchgate.net/profile/Rajvinder_Khasriya
Thanks for the link, will have a read. I wonder if I need to be more patient with the vagifem. I have been on it a few months but not consistently enough previously, I think, as the bladder issues had eased up so was forgetting and only using twice a week.
I need to find that FB group if it's the VA one you mean. Had a quick look previously but didn't find it, will look again.
Getting into the water courses because of The Pill apparently :-\.It is 10 microgram compared to the previous 25.
I will repeat:
Some ladies require the use of particularly Vagifem nightly, every night ........ despite what the 'experts' [how I HATE that word] tell us. Because it is delivered in a much smaller dose than originally designed: 10 instead of 20 but I don't what the measurement is. Ladies also find that using 'sylc' or 'yes' products often helps keep the whole area supple, less dry and therefore unlikely to itch or be sore. Add to that a pain relief [Nurofen helps me], symptoms can be kept background.Vaginal atrophy mimics urine infection-type symptoms *really* well
[needed an excuse to use that one ;-) ]. A urine sample has to be sent to a lab to see if it grows bacteria to be treated with the correct anti-biotic. ABs will ease symptoms but if these symptoms continue, the vaginal atrophy must be considered. With appropriate treatment and it would be nice to think that GPs would trust ladies more. By using personally and going back to explain what each lady requires should be enough. Quality of Life seems to be forgotten when GPs start quoting risks >:( and 'what we ought to be doing' . I am SO lucky, my GP has been great.
Earlier this week I began with an 'attack' of atrophy: heavy bladder region, feeling nauseated, shivery when I peed, need to pee more often and that family feeling of needing treatment :-\. So mid-afternoon I put Ovestin up there and another load at 10.30 after my bath. Added to that Nerofen every 3 hours settled the symptoms.
Katejo,Eleanor B. You might like to look at this link. There is a very useful tip about how you should apply Vagifem. It has just been posted on the FB page and several people have commented on it. i asked for the original source. https://suecroftphysiotherapistblog.com/2017/05/17/update-on-local-oestrogen-use/
Thanks for the link, will have a read. I wonder if I need to be more patient with the vagifem. I have been on it a few months but not consistently enough previously, I think, as the bladder issues had eased up so was forgetting and only using twice a week.
I need to find that FB group if it's the VA one you mean. Had a quick look previously but didn't find it, will look again.
Earlier this week I began with an 'attack' of atrophy: heavy bladder region, feeling nauseated, shivery when I peed, need to pee more often and that family feeling of needing treatment :-\. So mid-afternoon I put Ovestin up there and another load at 10.30 after my bath. Added to that Nerofen every 3 hours settled the symptoms.
Not dim at all. I have no idea of what's up there and yelp a bit when the smear test takes place.The thing which causes me stress is that, given the unreliability of urine tests, you can't be sure whether the symptoms are caused by the VA or are actually an infection needing an AB. You could apply extra Estriol/Vagifem and find that it doesn't work and you actually need an AB. That is combined with the difficulty in getting an appt. at short notice.
4 me, atrophy certainly mimics the feelings of urine-type infection - need to pee, heaviness in the bladder area, shivering and that nip in the spincter. The reason is lack of oestrogen = dryness, as well as the over-all area: bladder, vagina, anus : being so close that the whole area is affected. Bad design? :bang: :bang: :bang: :(. On Tuesday I had those symptoms which have been eased by using the VA treatment and Nurofen. I have one tender area on the left inside otherwise the vagina remains generally healthy.
I have never been concerned about how it works or why, simply that the feeling of razor blades up there :o eased within days and certainly, I would have been off a cliff had those feelings continued :'(. I find that KY Jelly on the outer folds keeps the area supple and less itchy.
Are you prone to urinary tract infections, sorry if you've already told me but meno-brain is in full swing today :-\Yes I am prone to them. That is one of the main reasons why I wanted to try Vagifem to reduce the chances of getting them. The nature of my UTI's has apparently changed. I used to get a dull ache (rather like a period pain) but not cystitis. The most recent ones have been more burning.
Now that I recognise my VA symptoms I don't worry if it is an infection as the regime I use sorts it. 4 me then, it's not an infection.
ABs should not be given randomly as they are being shown not to work as effectively. They did ease my symptoms initially [3 times in 2 years] of 'infection' but tests the 4th time showed no growth. Does the regime you use ease symptoms at all? A dip stick test in the Surgery shows 'nowt' usually ;-).
If you are worried I would speak to my Nurse Practitioner in the New Year and ask what the likely hood in your Health Authority region of urine tests not being accurate. That opens up discussion about what procedure would be useful for you.
Yes, I read that too. Apparently the bladder wall is covered in creases and crevices where the bugs hide. Also, and I don't know how true this is, that cranberry juice helps to clean up the crevice bugs, even though it not really an infection killer.The NHS web advice on cystitis has recently been updated. It now says something like "It has previously been thought that cranberry juice might help but evidence no longer appears to support this".
What they have had some success with is D-Mannose, which helps to prevent E. coli bacteria adhering to the bladder wall. I spoke to a locum GP about this during a recent bout of cystitis. He had worked with a gynaecologist who had trialled it on women who had recurrent cystitis, and it seems to work. As you will probably know, it only works on E. coli, and is for preventative purposes only, not cure.Yes, I read that too. Apparently the bladder wall is covered in creases and crevices where the bugs hide. Also, and I don't know how true this is, that cranberry juice helps to clean up the crevice bugs, even though it not really an infection killer.The NHS web advice on cystitis has recently been updated. It now says something like "It has previously been thought that cranberry juice might help but evidence no longer appears to support this".
How can I tell if wanting to wee a lot is, without pain, is due to VA or anxiety? I keep getting anxiety shooting through me for no apparent reason and wanting to wee. What with VA and uti symptoms and anxiety I don't know what's what anymore.I wee more frequently when anxious but without the discomfort and constant feeling of needing the loo/no relief after going to the loo.
Using Estriol as and when was my mistake when I first tried it. The GP have an inadequate explanation of its purpose and didn't mention the term VA at all as far as I remember). i suspect that the cystitis which i had a week ago was a genuine infection but that I had it together with VA symptoms. Both seem to have cleared up/improved now though i haven't quite completed the AB course yet.
Earlier this week I began with an 'attack' of atrophy: heavy bladder region, feeling nauseated, shivery when I peed, need to pee more often and that family feeling of needing treatment :-\. So mid-afternoon I put Ovestin up there and another load at 10.30 after my bath. Added to that Nerofen every 3 hours settled the symptoms.
To clarify - VA symptoms do not mimic UTIs in their systemic effect so if you are getting bladder and urethral symptoms, urgency etc, but also feeling shivery and nauseous - then this cannot be due to atrophy but is characterisitc of an infection. Of course at this time of year one could be getting VA coming and going + a bug unrelated to the VA/UTI making you feel shivery and nauseous.
Also to reiterate that vaginal creams should not be used as ointments as and when - if the regime you are using eg twice weekly maintenance dose - is not sufficient and is not dealing with the VA then an increase to 3 x per week should help. In between doses I presume women use the various moisturisers and remedies as recommended by Maryjane and Dancinggirl?
Hurdity x
Hi Katejo what do you mean using estriol as and when is a mistake, and previous comment about using it as an ointment. I thought it was OK to use externally . Also Katejo like you I had genuine cystisis that then cleared and dragged on and off with uti symptoms for weeks. Just about getting there. Also please any advice I have been using ovestin alternative nights to combat these week feelings , although supposedly should be on only 2 times a week, and the other nights using non hormonal Yes . Is this OK, it won't impede the effectiveness of the ovestin is what I am concerned about. Gp no help and need to get on top of this. Sick of feeling like a wee!Hi Suzysunday I was referring to the use of Estriol 'as and when' instead of continuously. I tended to only use it when i suspected a UTI to be developing. I have never used it externally. Now I have switched to Vagifem. I can't advise on Ovestin. i haven't tried it but others have said that it is ok to use it daily.
Thanks Katejo, I too have an emergency course of trimethoprim. I was given nitrofurantoin which is horrible and then trimethoprim, though later samples came back negative.Yes nitrofurantoin makes me feel pretty ill too. Trimethroprim has fewest side effects and usually works but, back in early september, it didn't do the job. A urine test then said that my bacteria were resistant to it. i noticed this morning that the hospital had supplied me with a double prescription of trimethoprim. That means that i do have a spare one to put aside. I hope i won't need it.
So angry, just needing to vent. I saw a doctor yesterday - she was young and didn't exactly inspire confidence. I told her I have had weeks of needing the toilet all the time and that I didn't believe the test which said negative for uni was necessarily correct. I mentioned the Guardian article I read saying that the regular urine test is a bit rubbish. She was having none of it - wants me to wait for my appointment with urogynae, which being the NHS could be months. The vagifem which I have been using for at least 4 months isn't touching this. This came swiftly on after penetration and I'm pretty damn sure it's an infection. I get the feeling that because I'm menopausal and have mentioned vaginal dryness (which in my case is very mild) they now won't even consider the possibility of an infection they aren't catching. I was told to bring in a sample today and was told a locum would phone me this afternoon. She did and said I could put my mind at rest as the dipstick was fine and she would send it off but everything seemed ok. I said this didn't put my mind at rest at all, that what was the harm in trying one course of antibiotics in case it worked, rather than being in a desperate state for weeks. If it doesn't work then it doesn't work but at least I'd know. I was really grumpy with her, which I am now concerned about as it just adds to the hysterical menopausal woman image which I think a lot of doctors carry in their heads. The irony of course is that their behaviour, after weeks of suffering eventually leads to losing it with them. I just couldn't bear having some 5 year old doctor telling me I shouldn't be concerned. She should try not being concerned if she needed to pee every twenty minutes. I'm having fantasies of breaking in to a pharmacy.That would infuriate me too, particularly given that the holiday is coming and you are suffering. She should let you have a Trimethroprim course to cover you for the Xmas break. the one which I mentioned above did work.
To add insult to injury just spoke to my mother after writing that, who said she has had this problem all her life and just takes trimethiprone (sp?)and it goes. Her GP said it was worth treating as things don't always show up and it might help!!!! She has it on repeat prescription.
There, said I needed to rant :)