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[aidansrest]

Hi

I'm completely new to this forum, so 'hi' to everyone!
I stumbled across this site whilst l was googling my condition.

I am 58 years old, and since the start of the menopause I have been plagued by UTI's which have been helped by courses of antibiotics, and bladder problems (feeling like I need to pass water constantly, but no infection), that was helped by vagifem (prescribed temporarily in 2018).

In June of this year, I had a very bad attack of cystitis which was helped by antibiotics, but the horrible, hot, dry, stinging feeling remained.
I was then prescribed HRT (kliovance), and Estoril cream. The Kliovance eventually helped the hot/dryness but I couldnt use the cream - it made me ill.
Went back to GP who examined me and discovered a urethral caruncle. It was extremely sore, like walking with razor blades between legs, the GP recommended that perhaps this was a case for Urology.
As I just couldn't wait on a list, I decided to pay for a private consultation.
Again I was examined and the urologist seemed to think it was nothing more suspicious than a 'normal' caruncle and advised that I used the Estoril cream twice daily and to let the caruncle settle down.
Tried again with the cream, agony, stinging and really sore, so I stopped that again and am just using the HRT tablets.
From yesterday, the caruncle does seem to be calming down, I can still feel it, but feels so much easier, however, at the same time, I now feel that my bladder is continually full.
I can wait at least three hours between visits to the toilet, but the feeling is so annoying.
As I said earlier, I was prescribed vagifem a few years ago when I had the same feeling and it eventually worked.
Has anybody else suffered in this way?

Sue

[Whatsupwiththis]

Welcome Sue.  Yes what you describe is GSM or VA (vaginal atrophy).  I went through exactly the same thing.  Try the Vagifem again and also ask for Ovestin for external use.  Persevere!  It took me close to a year of using Vagifem DAILY before I felt 'normal again.  The dry stinging feeling is more than likely your nerve endings waking up after being estrogen deficient for a few years.  Hang in there.  I use Vagifem internally and estrogen cream externally 5x a week and will need to continue this regime for life.  It takes A LONG TI.E for Vagifem or any other product to work so patience is a must.

There are several products on the market.  It's what you prefer as a mode of transportation so to speak 😅.  Some women love Intrarosa, a DHEA.  Some women love Ovestin, estroil and some women love Vagifem, estrodiol.  I prefer Vagifem myself as it's not messy and quite easy to insert.  Good luck and again PERSEVERE!

[aidansrest]

Thank you so much!

I will certainly take your comments and advice on board! I am seeing the Urologist again on Friday and I will mention to him what you have said and hopefully things will start to calm down.

I will report back on Friday - thanks so much!

Sue

[CLKD]

Do read our 'bladder issues' and 'vaginal atrophy' threads: vaginal atrophy mimics urine infection-type symptoms really really well.  If you had urine samples sent to a Lab. which came back without growing anything, the 'ovestin' or 'vagifem' should ease symptoms.

However; if the vaginal tissues are very thin the product may well sting.  Some ladies find using a moisturiser, i.e. 'sylc' or 'yes' products of use with VA treatment.  It really can be Trial and Error!

Let us know how you get on.  You may find that the Urologist may not be aware of other VA preparations so it's education time ;-).  Also, "Me and My Menopausal Vagina" is a good read ;-).

[aidansrest]

Thanks so much. I'll mention all suggestions to urologist tomorrow and will let everyone know what is said.
Had a terrible night- painful bladder, resulting in a hot water bottle and painkillers.
Really sick at the moment, plus a holiday in Greece looming! 

Sue

[CLKD]

Make sure that you take a copy of your prescription with you. 

Take a list of worries to the consultation - let us know.

[aidansrest]

Thank you - I will

Sue

[aidansrest]

Hi Folks

Well, after my second visit to see Urologist he gave me a little more advice, and, obviously, rather than we continually paying him to see me, advised me now to go back to GP.

My GP and myself have a letter from him, regarding my first visit where he found no abdominal abnormality, a vaginal examination revealed a relatively healthy perineum and a mucosal swelling with the urethra meatus.
It could be an early caruncle or an inflamed mucosal.
It did not have the appearances of cancer, but, obviously, if this persists, he recommended having a cystoscopy and biopsies.

Felt quite relieved about it all, as he didn't seem too concerned.

However, I explained that now, my bladder is so irritated it just feels full constantly, resulting in a low pelvic ache - again he said that all nerve endings are so intertwined that when one area is inflamed, another will 'come out in sympathy.'

Advised me to make appointment with GP and ask for alternative cream, (as Estroil killed me) I mentioned Ovestin and perhaps a higher dosage of Vagifem to calm things down.
The earliest appointment I could get was for 2nd September!!
Can anybody please help and give me hints on how to calm my bladder in the meantime - getting so despressed about it.

Thanks
Sue

[CLKD]

Ring your GP and ask for treatment, you shouldn't require an appt., it can be left 4 U 2 collect.   When my bladder nips I swallow 2 'nurofen' capsules, 3 times a day.  It relaxes the spincter as the bladder finishes emptying . 

Although 'yes', 'sylc' or KY Jelly won't replace the oestrogen loss which causes VA symptoms, they can help with any dryness in the vaginal area.  Used often.  Let us know how you get on with the request for treatment. 

[aidansrest]

Thank you
I will
Sue

[aidansrest]

Hi

Just an update.

My GP prescribed another course of Vagifem, without me having to see her (still have appointment with her on 2nd September), but an alternative cream to Estriol (which I have a bad reaction to), still unforthcoming.

So just Vagifem for now.

Caruncle (or whatever it is, hoping it may be a inflamed mucosal, as might be able to be treated sooner), isn't too bad at the moment, but my bladder is going berserk.
Constantly feels full, heading off to loo every 60 minutes or so, not enjoying the experience when I get there, and driving my husband, and myself, mad!

Feel as though I can't go out or do anything, as in too much discomfort, or just desperate for a wee!!

Can't sleep properly; waking up at least 3 times a night with full bladder feeling - a horrible sensation, like full to bursting and someone sitting on it, but trip to toilet just results in a tiny, painful trickle.
Fine during the day (can't stop), but now its making me anxious about night times.

Can't wait to see GP in a weeks time.

Sue

[Taz2]

Hi Sue. When did you last have your urine tested for infection? Your symptoms sound very similar to mine when I have a UTI. As you get older there is usually no pain with cystitis - just that unbearable feeling that you have to keep going for a wee even when it's just a trickle.

Taz x

[aidansrest]

Hi Taz

Was tested around 3 weeks ago - but didn't have these particular symptoms then.
It started as cystitis, then from there to a hot, dry, burning, with stinging when I had a wee, to pain in my urethra, but, at that point, no change in my toilet habits, wasn't going to toilet anymore than usual. But last week and a half, bladder has been awful - no stinging, just feeling full all the time.

Funnily enough, in 2016, I was fitted with a catheter for a week, and when it was removed I had urethral pain, coupled with constant urge to urinate.
Each time I had a test, it was negative for infection.
After six months of agony (and discharge), a nurse at GP surgery took a swab from urethra and found that I had an infection there that was causing the discomfort.
After a course of penicillin I was fine!

We are heading off to Greece in 3 weeks time, and just do not want to be feeling like this when we fly - sitting on a hot bottle helps, but not really something I can take abroad!

Sue x

[Eviepf]

Hi Sue

Sorry to hear that you're having such a bad time. I also have similar symptoms intermittently and it's just awful.

You definitely could still have a UTI, as the standard dipstick test isn't really fit for purpose - maybe have a look at the CUTIC website for more info:  https://cutic.co.uk/

As a short term measure, bicarbonate of soda in water can help alleviate symptoms as it alkalises your urine, which reduces stinging - a small teaspoon of bicarb in a large glass of water. There is also a product called AZO (available via Amazon) which I have occasionally used in extremis as it anaesthetises the bladder (and turns your wee bright orange!). Very important to note, though, that you shouldn't use either without first checking you don't have any contraindications - i.e. other health issues or medications you're taking.

Something else you could try, if you haven't already, is D Mannose, which is pretty innocuous (although I think should be used with caution if you diabetes, as it's a form of sugar). I've been using the D Mannose powder with lemon from Sweetcures, which is quite effective for me.

I hope you feel better soon.

[aidansrest]

Thank you so much Eviepf (and to everyone else who has tried to help), I am visiting the GP again on Thursday, and have been making a list of all my worries/concerns etc.. and hoping that she can prescribe something.

A few years ago I did have an infection in urethra that didn't show in a urine test and only was revealed after a swab from the urethra had been taken.

Hopefully, it'll be something like that.

I just feel very anxious all the time, which is probably not helping either!

Will check out the cutic site

Thank you
Sue