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[pepperminty]

Is your urine smelly? That's always been the first sign for me of an actual infection. Are you on maximum dose painkillers to help you through the night. I know how miserable bladder pain can be.

Bladder stretching isn't as horrific as it sounds though obviously something to be avoided if not necessary.

Taz x

My pee does smell a bit- more than usual - especially in the mornings when it is concentrated- but I am drinking so much in this hot weather it dilutes it.  If I were  a man this would not happen. They get 2 weeks antibiotics as first line - just like women used to get before they changed the rules 50 years ago. The number of UTI's has gone up since then steadily- because 3 days is not enough to completely kill off any bacteria. I am taking pain killers , but it still hurts.

PMxx

[pepperminty]

Golly Pepperminty, you have researched and gone into this whole issue in such depth. I’m so sorry to hear this us happening to you again.

The only knowledge I have is from my specialist regarding sex hormones.
She says too high progesterone can lead to urinary tract infections and too high estrogen to cystitis. This can be very subtle in terms of dosage, so yet again, less is more.

Dhea has an impact at well, but not got to the bottom of that one yet.

If it is an infection could you not use d-mannose? High dose to start, then reduce.

You are so knowledgeable about all of this, so please excuse my student meandering’s.

All the best to you Pepperminty xxx

Hi,

I am a person who needs to know what I am taking and the causes etc- we all have very valuable experience and knowledge. I will take myself off to a specialist in london, if I get no joy as living like this is not an option.
I will have to wait until the weather cools as the heat  does not agree with me. The average time a woman suffers is 6 years before she seeks help with chronic UTI's - that includes woman who get them several times a year and those who have pain permanently.

I could not live with this that long! I cannot believe the callous and matter of fact way doctors treat women with this issue. I just hope that when someone prescribes another course of antibiotics that they are long enough to work.

PMxx

[Joaniepat]

Pepperminty, I can highly recommend the late Prof Malone-Lee's team at 10 Harley Street. You probably know about it, and also about the Embedded/Chronic UTI FB support group. The Prof's protocol worked for me. Good luck.
JP x

[pepperminty]

Pepperminty, I can highly recommend the late Prof Malone-Lee's team at 10 Harley Street. You probably know about it, and also about the Embedded/Chronic UTI FB support group. The Prof's protocol worked for me. Good luck.
JP x

Thank you Joaniepat, for your suggestion, I am considering this.

 There is also Sachin Malde , who is a possibility. I am right at the beginning of my journey and my symptoms wax and wane . I was in so much pain yesterday as the day went on and the evening improved a bit, but I peed every half hour - urgency and feeling like period pain , but not excruciating. I am also considering going to a pelvic floor physio as  I am very aware that the area is tight as a drum due to the pain and trying to hang on before I go as if i did not I might as well sit on the loo permanently!

I am so please ML's treatment worked for you.
 
I think I probably (for peace of mind )need to rule out other things too. But trying to get a doctor's appointment and any continuity is impossible.  I had the symptoms for 4 weeks and could not get antibiotics for the first 2 weeks. So I think it imbedded in that time. My Bladder was shedding like a snow storm!

I think Sachin Malde checks for vaginal issues too and  does the microscopy I believe.

How long did you take the antibiotics for if you don't mind me asking?

PMxx

[Marchlove]

Hi PM

What a nightmare for you!

My hormone specialist talked to me a couple of months ago about the importance of your urine ph.  Didn’t really understand it but I just wondered if you’d tested your urine to see if it’s acidic or alkaline?

This paper might help I’m some way

https://labpedia.net/urine-for-ph-and-its-significance/

X

[Marchlove]

Hi again

Have a look at this on mumsnet, the post by Laingsacidtab

https://www.mumsnet.com/talk/general_health/4526255-Uti-question

X

[pepperminty]

Hi PM

What a nightmare for you!

My hormone specialist talked to me a couple of months ago about the importance of your urine ph.  Didn’t really understand it but I just wondered if you’d tested your urine to see if it’s acidic or alkaline?

This paper might help I’m some way

https://labpedia.net/urine-for-ph-and-its-significance/

X

Thankyou Marchlove,

It is a nightmare, I had a UTi last October and the macrobid and Trim' antobiotics of 6 days cleared it up. It haven't had the macrobid again this time as I had a stomach issues and they did not want to give it to me as it gave me loose bowels before. Hence the trim' antibiotic this time.

I now have permanent period pain radiating into the hips. I have studied pain management extensively, so I try to practice this which helps to cope with pain - which actually comes from the brain , ( saying there is a problem) not the area that hurts.  So one can dampen it down sometimes.
But this does not get rid of the cause.
I am considering an MRI - but not sure what that will show except ruling stuff out- someone I know had problems and the GP did tests said nothing wrong with you -So after a year she did am MRI privately and they found a tumour!
I am not saying I have a tumour of course , but it just shows you that GP's are not God and there is little patient centered listening going on these days.

PMxx

[Marchlove]

Just a thought, on trying to rule other things out, could it possibly be kidney stones? X

[Kathleen]

Hello pepperminty.

I am sorry that you are having these problems.

I have mentioned this before on the site and it probably sounds a bit whacky but have you considered your diet as a cause of the UTIs?  The science site that I subscribe to, NutritionFacts.Org, has a YouTube video which describes research done by a teaching hospital in America. It was discovered that women who ate or prepared chicken were being infected by bacteria from the meat and when they removed chicken from their diet, their UTIs resolved.

Fortunately I have never had a UTI ( perhaps because I never eat or prepare chicken, or indeed any meat lol) but a nurse made a comment to me recently that made me wonder about the frequency of this condition in older women. I was being examined and the nurse commented that I had a reclining (?) uterus. I think she meant that it was leaning backwards and a friend of mine was diagnosed with this years ago and was told that it would make becoming pregnant more difficult.  I didn't have any difficulties conceiving my children and an unusual womb position was never identified. All of this makes me wonder if our womb changes position in menopause and somehow this makes us more susceptible to infections?

I hope this has been of help and wishing you well.

K.

[Joaniepat]

Hi Pepperminty. I started treatment in April 2019. Spent the first three months on Cephalexin but had problems with candidiasis so then went onto Macrobid, which was much better in that respect. At the moment I am not taking any ABs, I came off them three months ago and remain asymptomatic although continue to take Hiprex. (I did have an earlier trial of stopping ABs and can't remember how long I lasted, possibly about six months, but unfortunately had a slight flair, so went back on them for another three months.)
Pelvic floor issues can indeed muddy the waters, so when you get settled on a treatment regime and have made some progress, it would be a good idea to see a PF physio.
My embedded UTI started in a similar way to yours, when I was unable to get treatment over a Xmas and New Year period. For me it was a toss up between the Prof and Dr Anderson. Don't know if Dr Malde was around then. I chose the Prof's team because there was plenty of info available about what they do and why, the science is good, and research results published. Trying to find out the same about Dr A was far more difficult and rather "opaque".
Good luck with whichever route you go down.
JP x

[pepperminty]

Just a thought, on trying to rule other things out, could it possibly be kidney stones? X

Thanks - I don't know , but that is an idea x

[pepperminty]

Hello pepperminty.

I am sorry that you are having these problems.

I have mentioned this before on the site and it probably sounds a bit whacky but have you considered your diet as a cause of the UTIs?  The science site that I subscribe to, NutritionFacts.Org, has a YouTube video which describes research done by a teaching hospital in America. It was discovered that women who ate or prepared chicken were being infected by bacteria from the meat and when they removed chicken from their diet, their UTIs resolved.

Fortunately I have never had a UTI ( perhaps because I never eat or prepare chicken, or indeed any meat lol) but a nurse made a comment to me recently that made me wonder about the frequency of this condition in older women. I was being examined and the nurse commented that I had a reclining (?) uterus. I think she meant that it was leaning backwards and a friend of mine was diagnosed with this years ago and was told that it would make becoming pregnant more difficult.  I didn't have any difficulties conceiving my children and an unusual womb position was never identified. All of this makes me wonder if our womb changes position in menopause and somehow this makes us more susceptible to infections?

I hope this has been of help and wishing you well.

K.

I do eat chicken ,  never heard of that and I suspect that it all drops and is not where it used to be!

PMx

[pepperminty]

Hi Pepperminty. I started treatment in April 2019. Spent the first three months on Cephalexin but had problems with candidiasis so then went onto Macrobid, which was much better in that respect. At the moment I am not taking any ABs, I came off them three months ago and remain asymptomatic although continue to take Hiprex. (I did have an earlier trial of stopping ABs and can't remember how long I lasted, possibly about six months, but unfortunately had a slight flair, so went back on them for another three months.)
Pelvic floor issues can indeed muddy the waters, so when you get settled on a treatment regime and have made some progress, it would be a good idea to see a PF physio.
My embedded UTI started in a similar way to yours, when I was unable to get treatment over a Xmas and New Year period. For me it was a toss up between the Prof and Dr Anderson. Don't know if Dr Malde was around then. I chose the Prof's team because there was plenty of info available about what they do and why, the science is good, and research results published. Trying to find out the same about Dr A was far more difficult and rather "opaque".
Good luck with whichever route you go down.
JP x

Thanks,
Dr Anderson recommends Sachin. I have had a good night last night and slept through. Very little pain yesterday , but a slow flow of pee. Today a bit of groin pain and a bit tender around the bladder , but nothing I can't handle- it is the excruciating pain , no sleep and the continual  wanting to go that is the killer. I keep on trying to relax my pelvic floor , which doesn't like the pain.
Why on earth the NICE guidelines aren't up dated at least to increase the first line antibiotic dose I don't know. It would save the NHS   so much money.

Again thanks for the input. Sometimes we feel alone and need some advice and support. And on here all the ladies are very knowledgeable.

PMXX