My symptoms first started at the age of 18. It would present with awful urethral pain and passing blood. I would obtain 7 days of antibiotics. The doctor would rarely suggest any follow-up.
Periodically the infection would go to my kidneys. I went to a kidney specialist around the age of 20 (thanks to my mom) and he ruled out any kidney issues.
In my 20's I also noticed awful pain after sexual intercourse and just thought this was normal. I started to notice a correlation with intercourse, pain and subsequent infection. Many times, I would be curled up in a ball and the urine culture would come back negative. Again, I just thought this was normal and something that I had to endure.
In my 20's I started to experience hives from Penicillin, Keflex and Sulfa. My chart was stamped "allergic".
I had periods of a reprieve in my 30's. Maybe 2 to 3 infections per year. In my later 40's and early 50's it started to ramp up. I stopped getting the usual urethral pain with an infection and I felt it more in my bladder. In addition, the infections started to go directly to my kidneys. In my later 50's I started experiencing chronic flares and my urologist diagnosed me with interstitial cystitis. I lived on a heating pad and ate the interstitial cystitis diet.
I went for bladder installations for 3 years. During the installations, I started to get so sick I thought I had Parkinson's' disease. My muscles in my legs were weak, I had chronic fatigue and a low grade sore throat.
I finally tested positive for klebsiella pneumonia and immediately stopped the bladder installations because I was confident that I had obtained that new type of bacterial strain from the urinary catheterization procedures.
In my 60's, I was always feeling unwell, chronically fatigued and just felt that my body was fighting something. Because I wasn't experiencing any urethral pain, I did not correlate it to bacteria in the urine.
My absolute biggest mistake was seeing a new urologist in October of 2020. When I went to her, I was feeling good. She put a catheter in without my consent. It has been hell for me since that day. One week after seeing her, I was extremely sick and experiencing flank pain. The urologist suggested weekly Cirpo installations, and I did the installations, blindly. I retested with the Microgen test, and the bacteria showed about 15 new strains.
At that time, I did a lot of research and joined a facebook group with members who struggle with chronic uti's. I realized I had an embedded infection. That was an aha moment for me. It all made sense!
Medical practitioners have been a mixed bag. The urologist that I saw for about 20 years was kind and empathetic, but would just prescribe antibiotics and bladder installations with no resolution of my problem. The last urologist, who gave me a urinary catheterization without my approval, was pushing me to get a bladder sling and Mona Lisa surgery.
I went to London and started the Uromune vaccine in August of 2022. In addition to the Uromune vaccine I was taking vaginal estrogen and Hiprex (100 mg) 2x daily. From August to December, I was doing well but started to experience symptoms from an infection. I again did a Microgren DX test and it was positive for klebsiella pneumonia. I also started transdermal estrogen and now I'm on a dose of .5 mg. along with progesterone. I started feeling better and better and better as I titrated up on the estrogen and I was able to work through the klebsiella without any antibiotics.
I feel strongly that my feeling better was attributed to the combination of the Uromune vaccine, daily trimethoprim and transdermal estrogen The sleep that I am experiencing being on the progesterone, has been life changing. I am not up going to the bathroom and very rarely have any bladder leakage. I feel as though I have turned a corner in my life.
Being consumed over the past 5 years is an understatement. If it wasn't for such a supportive husband, going on a facebook and finding a support group where I learned about embedded infections and the Uronmune vaccine, I don't know what I would have done.. I am thankful every day that I am feeling better.