I am close to being a shut-in! Chronic UTIs ruining my life

Kidney and urinary tract
1

Summary:

46 yo female.

Childless by choice, happily married 15 years.

FIRST uti Ever was in my 30s and clearned up fast with antiobiocs

Full hysterectomy 1.5 years ago due to adenomyosis and no desire to have kids

Taking hormones from gyno

Went through three urologists until I found one I liked.

Symptoms mostly -- really bad burning AFTER urinination (I tend to avoid it! Because it starts the cycle).

Extreme bladder/ pain.  Want to go to the bathroom and just get a dribble

Some urge incontinence when heading to toilet.

Burning type pain after intercourse

Take cranberry suplement, pro biotic, and avoid all soda and citric acid.  It's depressing. Using a strict UTI friendly diet.

No leakage-type issues

Had a cysto - nothing bad was discoverered

Using oxybutynin 2x a day.  Tried veriscare and every glass of drug wih annoying side effects and no real relief.

Observe good sex hygine, wear proper clothes.  Rarely have penetraion these days: I get a flare up after intercourse! Seeing a pellvic physical therapist twice a week to work on the pain during sex and more bladder control.

The last two times I visited my urologist, results came back negative, but after going to the lab, three days later I get a call -- infection, need to do

three days of Bactrim

 My next follow up with Uro is 2 months so I asked for a lab slip to just test my urine in about two weeks.

Huge financial strain -$60 for all uro visits, $35 two times a week for PT. Plus my work hours and dropping rapidly since I want to stay home.

So here I am.  I work from home and am afraid to leave the house.  My recent BIG family dinner had me visit the restroom 8 times.  It's so embarassing.  Nothing comes out anyway - just more pain.  But I feel like I am going to have an accident ALL the time.  Peeing makes it worse!

So I avoid peeing in public because I don't want a flare up.

I have considered bladder botox but that terrifies me, and I don't know that it will help since my issue is not mostly bladder control.

This is ruining my life, my marraige, my work.  I am afraid to go to work meertings.  I am often up in pain if I have to go to the bathroom middle of the night.

I can see my uro again, but I don't knwo what to tell her. I get a shrug often.  She offers botox and the electro stim thing. I have tried every "class"of drug.

I feel like I am constantly on a round of Bactrim.  I have another antiobiotic to take on days when I have intercouse (rare now).

I apoligze this is so long, I am just praying soneone has a similar situation,

Thank you.

2

It is possible that your bladder was damaged by the hysterectomy. I too had this for adenomyosis and was told at my six week post op visit ( NOT immediately after the op!) in response to my complaints about bladder problems that my bladder and uterus were stuck together and they had to slice them apart and that the resulting scar tissue could cause problems.

I have had on and off problems since but not infections. This has been compounded by taking Cipro which can cause interstitial cystitis.

3

Thank you madge. 

Does this also apply if the hysterectomy was done fully laporoscopically?  I am surprised none of the urologists have asked me questions about it. It did not start right away, it really started a few months later.

I will look into it!

Is there any way to fix it, if this is the case?

4

K I need some advice going threw a bad bacteria infection feel like I'm dying going to see urologist on Aug first should i ask to be admitted somewhere to get the treatment I need

5

I dont know. I had a normal op with a horizontal scar above the groin. I do have very bad adhesions from this. Even keyhole surgery can cause adhesions. These might pull on the bladder. Have you taken a fluoroquinolone antibiotic such as Cipro since the op?

6

I have taken Cipro before, yes I think it does interact with Citalopram which I take, so they usually give me Bactrim instead. I am definitely going to ask about the possibility of scar tissue, thank you for this insight.  I am surprised none of the urologists even asked about it -- I have seen two urologists and now am seeing a gyno-urologist.  

7

There is a forum on this site dealing with fluoroquinolone toxicity. The problem with this class of antibiotics is that they can have delayed side effects which can strike many months after finishing a course so patients do not mmake the connection with the drug. Many female " floxies" complain about interstitial cystitis. When I complained at the hospital after my op about bladder pain the doctor said to delay urination till the bladder was fuller so as to stretch the scar tissue!

8

Hello again so my Dr had me on all those meds took cipro and brought my body down my immune system is weak I have no energy my kidneys and bladder hurt all the time now they have me on amitriptyline for pain I feel like I'm going down hill I'm was pooping jello poop they have me on a strict diet and I see urologist on Aug first i. Going crazy I've been thinking maybe find a specialist that deal with bacteria and let them put me in the hospital and figure this out I had at my start 75 percent bacteria o know have cystitis and paryitis I'm spelling it wrong any evidence I a so had fevers and blood pressure threw the roof

9

You are likely suffering from Fluoroquinolone toxicity . There is no medical cure for this. Most docs will not even entertain the idea that Cipro can cause these symptoms. There are sites where fellow sufferers offer advice on what personally worked for them in helping them feel better. Often doctors prescribe steroids or NSAIDs for the pain and this can actually make things worse.

10

So what do i do someone In my job who is certified told me I should seek a hospital that deal with bacteria infection only that I could go into kidney failure is this true

11

The first thing you should do to try and help yourself is re-establish your gut flora ( the good bacteria) which will have been seriously compromised by taking repeated courses of antibiotics. You can look up online how to go about this. A good probiotic is needed and eating the foods that good bacteria like. You need to eat properly cutting out as much sugar and processed food as possible and no sodas , coffee alcohol etc as these can irritate the bladder. When you have the symptoms of a UTI you need to insist that a urine culture is done to determine what bacteria are present if any.