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[greenECLECtus28]

We'll have just finished my 5th set of antibiotics! this is a complete nightmare I'm getting so depressed over this. All samples have been sent off to lab and antibiotics showing as positive for infection suggested First started with Nitrofurantoin so have had 3 lots of that 4 times a day for a week each time then waiting a week then sending in sample back in another week and coming back as still positive, then doc switched to Selexid 200mg as felt it wasn't worth another dose of Nitrofurantoin and this antibiotic came back as one of the ones we could choose so had a course of that which is 2 taken first then 1 every 8 hours 10 tablets in total so a three day course. So actually felt not too bad after those but then within a week could was also taking CranMed after antibiotics finished and didn't seem to get symptoms as bad but after a week handed in sample which certainly looked pretty clear this time but had noticed urine getting strong smelling especially in the morning and sure enough came back positive again so doc just prescribed the same antibiotic again Selexid as this came back again with the sample.

Obviously this is really getting me down as I've also been off work as well since the middle of May and the work keep asking how things are now and if I think I know when I'll be back but as I don't have full bladder control at the best of times because of my Spina Bifida I'm terrified I go back and have an accident as I don't know when I'm going to have to go to the loo until the last minute! So it's hard enough to manage things when I don't have an infection.

Anyway after the last result I asked for one of the docs to give me a call but instead got a call from the practice just advising me that I've been referred now to a Urologist but goodness knows when that will be as that is why I wanted to discuss this with my GP as I feel I need to also see a neurologist with regards to my Spina Bifida as sometimes there can be changes in your condition that could contribute to these things either that or it's the menopause. However I did make an appointment with one of the younger female doctors a couple of weeks ago so I intend to discuss everything fully with her and try and get some answers and try and get this whole issue resolved as it's really affecting my life now on a daily basis plus the way I am with health anxiety I'm terrified I've got some virulent bacteria infection that could poison me as I don't understand why this hasn't been cured by now especially as it's not random antibiotics it ones coming back after a culture or is this sort of thing common in menopausal women?

[Maryjane]

https://lookaside.fbsbx.com/file/Chronic%20urinary%20infection%20Picture%20Commentary.pdf'token=AWxQlZifCA14_M3ibT7--_djyOo29LbtMzSC-j9VVgJafHucCFPIx-IbZ6iAHKmkMbzZpNFsFhMMY_hLi_S5a7Ss2G8ggarcBjLXos_8T0o-JlsWeRa2lIx57CUrfqIcHx-lDmHQn4Pae16Ee8NEiDF8sjk07-dkI5exgQKrYpmXEVjd3SKyN7EwqcBYfDCMrEtzOnNbSk5TKW-CVf35kQeS

[greenECLECtus28]

Thanks

Very interesting!

[CLKD]

Oh have  maybe an update with your Neurologist anyway? 

[greenECLECtus28]

Howdy 😀 thanks for the hug

The problem here in the U.K. On the NHS is you get amazing care with Spina Bifida  when you are a child but when you get to an adult then it seems there aren't the resources it was speaking to the Spina Bifida association who recommended that I should see a neurologist and have an MRI to check everything and I also got in touch with the Neurological Centre of Excellence at our new Queen Elisabeth hospital they recommended to speak to my GP and ask for a referral to them and they will then be able to work out a care plan for me to see the necessary people. It feels like everything is all happening at once I've been fine for years but from last year and this year I've had various issues from mobility and now this I've seen an Orthopaedic surgeon who was very good but he advised that he feels because of my condition at the moment a hip or knee replacement would be out of the question as there is not enough muscle to support this and I think adding on all the Urinary stuff on top of this makes me fear for the future I've always been quite a tough cookie but I think the whole menopause hormone thing is just adding to the mix 

Anyway I have this appointment on Thursday coming and I'm going to be firm about getting a proper referral I've printed everything out all the communications I've had over the last couple of months from people in the know with regards to my condition and what they recommend so we'll see how I get on. I was wondering if I should ask to see a gynaecologist as well as I suppose it could be losing the hormones etc that might be causing the issues strangely enough I was having a think about things and I remember I did have a lot of issues with UTI's right up to my teens and was on prophylactic antibiotics I always assumed that I just learned to deal with things when I got older but I was wondering if my hormones kicking in then helped the situation and reduced the incident so that I was able to come off the antibiotics and going through the menopause and losing the protective hormones and all the membranes thinning etc means that it's now easier for these UTI's to get a hold again.

Just a thought

[greenECLECtus28]

Thanks for that! am taking a probiotic and also taking CranMed which is a concentrated version of cranberry just at the desperate situation where I will try anything!

[Jenna]

 I was wondering if I should ask to see a gynaecologist as well as I suppose it could be losing the hormones etc that might be causing the issues strangely enough I was having a think about things and I remember I did have a lot of issues with UTI's right up to my teens and was on prophylactic antibiotics I always assumed that I just learned to deal with things when I got older but I was wondering if my hormones kicking in then helped the situation and reduced the incident so that I was able to come off the antibiotics and going through the menopause and losing the protective hormones and all the membranes thinning etc means that it's now easier for these UTI's to get a hold again.

Just a thought

Hi greenECLECtus,

I think what you say makes perfect sense and you could well find that a local oestrogen i.e. Vagifem or an estriol cream might help prevent these UTIs, as it has with ladies on the forum.

Have a read of this:

http://www.webmd.com/menopause/news/20130620/how-estrogen-may-help-prevent-urinary-tract-infections-after-menopause#1

I know it says "after menopause", but it can happen well before that, as you will read on here!

I'd ask your GP if he will prescribe Vagifem (or Estriol Cream) for you and I really hope this will help. 

Please let us know how you get on!

[CLKD]

Would there be any support at Stoke Mandeville? 

[Katejo]

We'll have just finished my 5th set of antibiotics! this is a complete nightmare I'm getting so depressed over this. All samples have been sent off to lab and antibiotics showing as positive for infection suggested First started with Nitrofurantoin so have had 3 lots of that 4 times a day for a week each time then waiting a week then sending in sample back in another week and coming back as still positive, then doc switched to Selexid 200mg as felt it wasn't worth another dose of Nitrofurantoin and this antibiotic came back as one of the ones we could choose so had a course of that which is 2 taken first then 1 every 8 hours 10 tablets in total so a three day course. So actually felt not too bad after those but then within a week could was also taking CranMed after antibiotics finished and didn't seem to get symptoms as bad but after a week handed in sample which certainly looked pretty clear this time but had noticed urine getting strong smelling especially in the morning and sure enough came back positive again so doc just prescribed the same antibiotic again Selexid as this came back again with the sample.

Obviously this is really getting me down as I've also been off work as well since the middle of May and the work keep asking how things are now and if I think I know when I'll be back but as I don't have full bladder control at the best of times because of my Spina Bifida I'm terrified I go back and have an accident as I don't know when I'm going to have to go to the loo until the last minute! So it's hard enough to manage things when I don't have an infection.

Anyway after the last result I asked for one of the docs to give me a call but instead got a call from the practice just advising me that I've been referred now to a Urologist but goodness knows when that will be as that is why I wanted to discuss this with my GP as I feel I need to also see a neurologist with regards to my Spina Bifida as sometimes there can be changes in your condition that could contribute to these things either that or it's the menopause. However I did make an appointment with one of the younger female doctors a couple of weeks ago so I intend to discuss everything fully with her and try and get some answers and try and get this whole issue resolved as it's really affecting my life now on a daily basis plus the way I am with health anxiety I'm terrified I've got some virulent bacteria infection that could poison me as I don't understand why this hasn't been cured by now especially as it's not random antibiotics it ones coming back after a culture or is this sort of thing common in menopausal women?

Hi GreenECLECTus28  I really felt for you after reading this. I have had probs with UTI's and AB's not working but I don't have to contend with spina bifida as well. Have things got any better since you wrote this?

[Scampi]

Have a google for Waterfall D-mannose - might be worth considering?  It's a sugar that the bacteria that cause most UTIs 'like' more than your bladder wall, so the bacteria stick to the sugar in the urine (it passes through your kidneys) and are flushed out.  I used to suffer from frequent, and persistant, UTIs but this stuff has worked really well for me (and I have no connection with the company!).

[JaneinPen]

Hi GreenECLECTus28.  I had continual UTI's and eventually the doctor asked for my sample to be tested for any other bacteria and it came back that I had a hard to treat bacteria. After consultation I was out on Augmentin for a week.  I needed a further week on this and it finally cleared it up.  During the UTI's I was prescribed Vagifem pessaries. Every night for two weeks then three times a week as this has proven to be beneficial to UTI sufferers. This along with a high dose cranberry tablet and a high dose vitamin C tablet each day I have now been free of UTI's for two and a half months (long may it last).

I had a cystoscopy which showed my bladder to be in good health and am awaiting a flow test to see if I empty my bladder properly

Good luck in your investigations. Keep us posted

[Katejo]

Have a google for Waterfall D-mannose - might be worth considering?  It's a sugar that the bacteria that cause most UTIs 'like' more than your bladder wall, so the bacteria stick to the sugar in the urine (it passes through your kidneys) and are flushed out.  I used to suffer from frequent, and persistant, UTIs but this stuff has worked really well for me (and I have no connection with the company!).

I have been trying it Scampi but haven't yet decided whether it works for me. Mentioned it to a GP last time i needed an AB and she hadn't heard of it.