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[Meadowblue]

Wondering if any of you wonderful ladies can relate to this.  I have been on Vagifem for over 5 years now and it suits me very well.   Usually twice a week but every 6 months I do a full 2 week reload. Also use sylk and yes products if required.  However, twice in the last 12 months with no warning I have suddenly be absolutely floored by all the symptoms of a UTI, intense burning and worse the awful urgency and rushing to the loo every 5 minutes.  I can be absolutely fine and then wow it's full blown.  My most recent holiday has been well and truly spoiled by the latest episode which, in the end, necessitated a trip to a local hospital who couldn't find any infection on dip stick but prescribed antibiotics as I said they have helped in the past.  I have finished these yesterday and am 90% better but certainly not 100%.  I have increased my vagifem dosage to every day at the moment.

Does anyone find this happens to them at all and have they found any magic way of nipping it in the bud before feeling so awful?

Thank you so much.

[dahliagirl]

Yes.

My way is to stop drinking anything that upsets the bladder, and have a day at home with a glass of water by me and drink what I need.  That way, I can get a full bladder and go to the loo a lot.  I usually drink weak tea at the usual times.  This seems to go a long way to helping calm my bladder.  It has been difficult lately with the hot weather coming and going.

The enuresis nurse told me to do that with my daughter when she had trouble staying dry at night - stretch the bladder a bit    and it does help with night weeing (but if you are awake a lot in the night you will make more urine anyway)

I use double vagifem, then every other day, then down to every 3rd day (which is approximately what I use normally)

I also use a bit of multigyn actigel as I have also had symptoms of BV/thrush in the past with a clear swab and this has helped me.

I wash with dermol500 if I need to use anything, otherwise just water.

[Meadowblue]

Thanks so much dahliagirl. So glad I'm not the only one.

[CLKD]

Originally the product was prescribed at 25?? and is now 10?? so many have to use 2 at once or every night.  Also, I find that an over the counter pain relief can ease the bladder spasm.

 

[Katejo]

Wondering if any of you wonderful ladies can relate to this.  I have been on Vagifem for over 5 years now and it suits me very well.   Usually twice a week but every 6 months I do a full 2 week reload. Also use sylk and yes products if required.  However, twice in the last 12 months with no warning I have suddenly be absolutely floored by all the symptoms of a UTI, intense burning and worse the awful urgency and rushing to the loo every 5 minutes.  I can be absolutely fine and then wow it's full blown.  My most recent holiday has been well and truly spoiled by the latest episode which, in the end, necessitated a trip to a local hospital who couldn't find any infection on dip stick but prescribed antibiotics as I said they have helped in the past.  I have finished these yesterday and am 90% better but certainly not 100%.  I have increased my vagifem dosage to every day at the moment.

Does anyone find this happens to them at all and have they found any magic way of nipping it in the bud before feeling so awful?

Thank you so much.

Hi Meadowblue  Your experience is so similar to mine. The only big difference is that I have only been on Vagifem for not quite a year. The Vagifem has worked pretty well for me (initially 4-6 times a week after the 2 week period) and later only 2/3 times after starting Evorel Conti. I haven't taken any AB course since last November and my sleeping has improved due to fewer loo trips but I have had 3 unexpected cystitis flare ups.
I have  a history of getting suspected UTI's just as i am due to go on holiday! I thought I was going to escape it this time after a year of Vagifem but it  has been coming and going over the past 10 days. I had 1 urine test which was clear. I handed in another this morning as a precaution. i am going away on holiday on Friday and had to cancel the same trip last year.
I have got an emergency supply of AB's to take with me. I am also going to take cystitis sachets. When at home, I use bicarb of soda dissolved in .
3 years ago I spent a night in an Italian hospital!

[CLKD]

Get some pain relief as that relaxes the bladder ;-)

[Katejo]

Get some pain relief as that relaxes the bladder ;-)

I always take plenty of ibuprofen & paracetamol as well when I go away.

[dahliagirl]

That is interesting about the pain relief, CLKD.  I will give it a go next time.

I have found that if I have a day out where I drink less, my bladder becomes irritable.

Also, if I take movicol for constipation, then that has an effect.  That sort of makes sense, as laxatives presumable stimulate smooth muscle which is what the gut is, and presumably the bladder reacts to this too (like coffee).

[CLKD]

I find that if I have a gap between treatments it aggravates the bladder more.  So I use 'nurofen' x 2 and a dose in the afternoon to settle symptoms.  It's finding what works 

[Meadowblue]

Just got back to read again now.  I have been really struggling past couple of days again.  It is the awful burning when I pass water coupled with the dashing to the loo which is so awful.  I would 100% say it's infection but I know in my heart of hearts it isn't as had so many urine tests this year which are all negative.  I just can't work out why I can be perfectly fine and then wham it's awful again.  I am trying very hard to drink lots of water which does help but am at my wits end with how to get out of this cycle.

I was doing so well that I just feel like crying if this is how it's going to be now.

[Katejo]

Just got back to read again now.  I have been really struggling past couple of days again.  It is the awful burning when I pass water coupled with the dashing to the loo which is so awful.  I would 100% say it's infection but I know in my heart of hearts it isn't as had so many urine tests this year which are all negative.  I just can't work out why I can be perfectly fine and then wham it's awful again.  I am trying very hard to drink lots of water which does help but am at my wits end with how to get out of this cycle.

I was doing so well that I just feel like crying if this is how it's going to be now.

Really sorry to hear that you are still suffering in this way. My recent flare up has now cleared and things have improved a lot. It is possible that the urine test results have been unreliable and you have an embedded infection. Have you ever had a referral to a urogynaecologist?

[dahliagirl]

Just got back to read again now.  I have been really struggling past couple of days again.  It is the awful burning when I pass water coupled with the dashing to the loo which is so awful.  I would 100% say it's infection but I know in my heart of hearts it isn't as had so many urine tests this year which are all negative.  I just can't work out why I can be perfectly fine and then wham it's awful again.  I am trying very hard to drink lots of water which does help but am at my wits end with how to get out of this cycle.

I was doing so well that I just feel like crying if this is how it's going to be now.

Sorry to hear you are still suffering. 

The drinking plenty water to stretch the bladder only needs to be done for a day (ie getting up to about tea time), after which you should go to normal-drinking-plenty-water, if you see what I mean - no point overdoing it. 

Sometimes I drink a litre of Cranberry juice first (Ocean spray seems to be the highest content) which seems to help me even though there is apparently no evidence for it.  I have tried cranberry tablets to no effect - there are some Macca () tablets which are supposed to be the active ingredient which some swear on.

[Dierdre]

If you're sure you dont have an infection then it sounds like you need to up the vagifem dosage to at least 5 times a week. Your oestrogen levels have probably declined more over the years so you will need more to compensate. I'd also ask for Ovestin, you can apply this around the urethra area at night, this has stopped me having any bladder problems.  Being stressed and anxious will also cause flare ups, I usually get this around holiday times too.

[Eviepf]

Hi Meadowblue

As Katejo mentioned, you could be suffering from an embedded bladder infection. Testing for UTIs is now been found to be very unreliable and the fact that a recent dipstick test showed as negative doesn't necessarily mean you don't have an infection. Maybe have a look at the CUTIC website: http://www.cutic.co.uk/ because there is a lot of info there.

Whatever the cause, I hope you feel better soon. As previously suggested, bicarbonate of soda (I always use a small teaspoonful in a large glass of water) can definitely help the immediate symptoms.

[Meadowblue]

Thank you so much everyone.  A little improvement today.  I am using vagifem every day at the moment.  I can't believe how much va feels like infection.  Just feel so low especially when none of my friends of the same age have any problems in this department 😥.  I really don't think it's an infection as when I had similar problems earlier this year samples were sent twice to the lab and both were clear.

It's just balancing the treatments which seems so difficult.  Just when you think everything is fine it hits you.

Thanks for making me feel I'm not alone with this horrible complaint.