Please login or register.

Login with username, password and session length
Advanced search  

News:

Mobile version of the Forum Click here

media

Author Topic: Looking for some feedback  (Read 1984 times)

greenECLECtus28

  • Member
  • *
  • Posts: 121
Looking for some feedback
« on: January 27, 2022, 02:08:20 PM »

Hi

First of all apologies if I’ve posted in the wrong area

I was born with Spina Bifida which among other things affected my
Bladder kidneys I was more or less on constant antibiotics as a child
When I reached puberty better able to control going to the loo and
I think hormones kicking in settled things down and I more or less
Had no issues

Then comes the menopause and about a year after my last period 2017 started
Getting UTI’s again this resulted in me being admitted to hospital after about
8 continuous rounds of antibiotics from the GP was diagnosed with urosepsis
And put on intravenous Gentomycin and Amoxil was then put on 6 months of
1 a day antibiotic first of all Ciprofloaxin 3 months then Nitrofurantoin 3 months

This seemed to solve the issue I was also put on Vagifem loading dose first then
Twice a week which I am still on

Then in 2020 took another UTI sent away as usual and came back sensitive to
Amoxil took that and things settled down again

Then in October there took another UTI treated with Amoxil
Then just after a month took another one beginning December started
On Amoxil until culture came back but that changed to Selexid as Amoxil
Not showing as sensitive to bug think it’s E-Coli again things seemed to have settled
I have test strips so because I’m so paranoid was testing daily so this morning up
Early and went to test, each part on the test ok at their allotted times it’s 60 mins
For nitrites and 120 for leukocytes

So after 120 noticed the leukocyte starting to change to pink indicating presence
Of white blood cells but negative for everything else (at the moment)
Spoke to practice nurse as she had called as having my blood pressure monitored
On a new drug I’ve been given she advised test again which I did and send up to her
She’s called back and said normally they wouldn’t send of for culture if just leukocytes
With nothing else but given my history she’s sent it off and just to keep an eye if things
Take a turn for the worse I have antibiotics at home but obviously don’t want to take those
Unless absolutely necessary

I’m getting so stressed out about this again I’m terrified I’m either going to end up back
In hospital or get some strain of resistant bug that they can’t treat

Can I ask the ladies who are on full HRT do you get UTI’s or does the combined HRT
Work better than just Vagifem

Logged

CLKD

  • Member
  • *
  • Posts: 75308
  • changes can be scary, even when we want them
Re: Looking for some feedback
« Reply #1 on: January 27, 2022, 03:06:14 PM »

Some require full HRT as well as 'vagifem' or 'ovestin'.  As well as a moisturiser on the labia to keep the area less dry.  I've been lucky, using 'ovestin' since my GP diagnosed atrophy.

I would ask for a referral to a urologist with an interest in menopause.   Vaginal atrophy mimics repeated urine infection-type symptoms really really well!  If you get the need2P feelings as the urine flow stops, maybe take 'nurofen' - 1 capsule 3 times a day to ease symptoms. 

Let us know how you get on.
Logged

Joaniepat

  • Member
  • *
  • Posts: 1771
Re: Looking for some feedback
« Reply #2 on: January 27, 2022, 04:01:08 PM »

Hi, yes I am on both systemic and local oestrogen and have had an embedded chronic UTI. I am still in treatment by Prof J Malone Lee's team at 10 Harley Street, and am much better now, no longer taking ABs, but still on Hiprex. Are you on the private FB support group? It is called Embedded/Chronic UTI Support Group, and is a good resource. You can find a list of specialists there. Also have a look online for embedded UTI and Prof Malone Lee.
As the bladder has a lot of oestrogen receptors, I think you could increase the Vagifem. Two a week is a very low dose. I use 5 a week.
JP x
« Last Edit: January 27, 2022, 04:04:40 PM by Joaniepat »
Logged

CLKD

  • Member
  • *
  • Posts: 75308
  • changes can be scary, even when we want them
Re: Looking for some feedback
« Reply #3 on: January 27, 2022, 04:36:36 PM »

 :thankyou:
Logged

greenECLECtus28

  • Member
  • *
  • Posts: 121
Re: Looking for some feedback
« Reply #4 on: January 27, 2022, 09:07:53 PM »

Hi Ladies

Thanks very much for getting back and all the info

CLKD would vaginal atrophy give positive results on a dip test? Ie for leukocytes etc

Joaniepat thanks for the info I’ll have a look on Facebook I was wondering whether the Vagifem
Could be increased as if I understand things correctly when you lose oestrogen the membranes
Become thin so bacteria can pass easier in to the vagina? So I was wondering if increasing the Vagifem
Would plump things up but I was also wondering if a combination of things would give me more
Protection

It’s making me really depressed and of course having Spina Bifida complicates things as
Infection can get quite far down the road before I get symptoms because of the damage
To my spine I don’t get the normal indications most people get with a UTI

Is an embedded UTI one that is lurking in the bladder for example the antibiotics seem
To deal with the bug but it comes back after a while so there is still some of the bug left and
Then it reproduces over the period after you finish the antibiotics the last couple of times I’ve
Finished the course and then it comes back just over a month later 
Logged

Joaniepat

  • Member
  • *
  • Posts: 1771
Re: Looking for some feedback
« Reply #5 on: January 27, 2022, 10:08:46 PM »

Hi, greenECLECtus28.
To take the liberty of first answering your question addressed to CLKD, VA would not, on it's own, necessarily present positive results on a dipstick, but only if you have a UTI as well.
You are right about the loss of oestrogen affecting the lining of the vagina. Lack of oestrogen can result in the vaginal environment becoming too alkaline, leading to an imbalance in the type of bacteria present, and that in turn can lead to problems such as candidiasis and bacterial vaginosis. Therefore, replacing the lost oestrogen helps to prevent these conditions. Vaginal oestrogen is thought to protect the whole genitourinary area, as some of it can pass to the bladder and urethra as well. As there are oestrogen receptors in the bladder, especially the trigone area, it should help to keep the whole area healthy. HRT can also help, as well as being good for health generally.
On the question of embedded UTIs, you have got the right idea. As I understand it, the bacteria change in form and become embedded in the bladder wall, only to burst forth and multiply at a later date. You do seem to have the symptoms of embedded UTI if the infection recurs a month after stopping the ABs.
The treatment at 10 Harley Street is long-term antibiotic therapy with narrow spectrum ABs, plus Hiprex. I took ABs for about a year, although it takes some folk longer than that, and am still taking Hiprex and being monitored at Harley St.
There is also a book on embedded UTI by James Malone Lee, called Cystitis Unmasked. It came out last year.
I am sure you will find the members on the FB group helpful, knowledgeable and encouraging. There is also one for Vaginal Atrophy, which was started by a member of this forum. It's worth joining that too!
Let us know how you get on, and what you decide to do.
With every good wish,
JP x
Logged

CLKD

  • Member
  • *
  • Posts: 75308
  • changes can be scary, even when we want them
Re: Looking for some feedback
« Reply #6 on: January 28, 2022, 08:58:27 AM »

Morning Girls and  :thankyou: Joaniepat.  Well explained  8)
Logged

greenECLECtus28

  • Member
  • *
  • Posts: 121
Re: Looking for some feedback
« Reply #7 on: January 31, 2022, 09:23:41 PM »

Hi Ladies

Just to say I have got a copy of the book by Prof Lee looks
 really interesting will start it tonight

I looked up the Facebook UTI support group and applied to join
But haven’t had anything back yet maybe I’ve not done it right
As I’m rubbish with this type of thing  ;D

I should get the results of the sample the nurse sent off this
Week I’ve been monitoring and it still showing some leukocytes after
The 2 minutes allowed for the dipstick I have also noted a tiny
Trace of blood showing on the dipstick on and off on the test it
Would come under ‘trace’

I was wondering if these symptoms would show if your bladder was irritated
But without infection

Anyway we’ll see what comes back

Thanks again for all the help

Keep safe  :)
Logged