I first started to experience symptoms when I was a child, I would have an awful urge to use the bathroom that wouldn't ease after I had gone. The burning and pain would follow. I would drink excessive amounts of water and eventually they would ease. I also learnt that being in water, either in a bath, at the pool or in the sea would help. I was never taken to the Dr despite my recurring discomfort. 

I finally left home at 16 and this is where I first started to really suffer with a chronic infection. Between the ages of 16-23, my CUTI would continue to get worse. I was put on many different antibiotics for a week at a time, but they would only ever give me temporary relief. At this stage I was peeing blood on a regular basis and even larger chunky clots would be passed while I sat in one of the thousands of baths I had. I missed a lot of work, and ate the pain relief. I was finally referred to a Urologist in Ireland. At the appointment I was told that I just had cystitis and as a woman it was something I had to just live with. They inserted a camera into my bladder through my urethra with no numbing, which was incredible painful, the camera showed nothing according to the report. After leaving this appointment in tears, my partner assured me we would get to the bottom of this. He helped me pay for a private appointment with another Urologist in Ireland. This Dr was a breath of fresh air. He listened and assured me he would help. He arranged for another camera to be used but this time he put me fully asleep so I did not feel a thing. The report found that the lining of my bladder was severely inflamed and that my urethra was very narrow. He prescribed a muscle relaxant to stop the throbbing in my urethra and a long term low dose antibiotic for a year. Those medications changed my life for the next 20 years! I lived my life as anyone would, I had sex, I drank alcohol, I went swimming in public pools, I didn't drink excess amounts of water, I sailed through two pregnancies. 

Sadly it did not last. At 40 I was SA by someone I had known (I feel this is relevant for my story as I feel the trauma triggered this all again for me). I started to really struggle with my vagina and bladder. I had urgency, discharge, soreness, heaviness in my bladder. I put it all down to Vaginal Atrophy and starting using Vagifem daily. Then in January 2024, I had a full blown UTI. All the memories came flooding back. I went to the Dr and she swabbed my vagina and took samples. At the time a UTI did show so I was treated with Keflex. It went away but my vagina never really settled. Some more swabs and BV and thrush showed, my vagina had also split in a few places. I treated both of those, and then by April another UTI.  At this stage because of my past experience with UTIs I was not going to wait 6 years before getting it sorted. I went into my GP and explained my history. I was dismissed with the cystitus, offered for referral to a Urologist, installations were mentioned and I was offered amitriptyline. At this point my vagina was still causing issues with excessive discharge and burning. 

I then found the CUTI FB page and read up about Harley St in London and how they treat patients like myself. I decided I wasn't going to wait for the Irish system to ignore me for years and I went to London in August 2024 and met Dr Harvey, after hearing my history, he believes my UTI has been there since I was a child and that the low dose antibiotics just made it dormant. My urine showed I had increased white blood cells, red blood cells and epithelial cells. That along with my symptoms, Dr Harvey was happy to prescribe me full dose long term Keflex alongside Hiprex if I could tolerate it. Since starting on these antibiotics, my bladder symptoms have steadily increased. My main symptoms were bladder heaviness, leakage, urgency, burning in my urethra and pain in my urethra. After 14 months my only symptoms are urgency and some burning depending on what I've drank that day. I have not been able to tolerate Hiprex yet and I keep trying to introduce it, but the burning after a week is unbearable. I have had consistent problems with my vagina too. I have treated for thrush, bv, vaginal atrophy. In December 2024 I decided to stop taking or putting anything in my vagina for a few months to see if I could work it out. I have been drinking homemade milk kefir from the start so thrush wasn't an issue. I also try and eat a low inflammation diet and avoid sugar most the time. During this time nothing changed too much. I then tried to introduce a moisturising pressarie and it seemed to help. So I decided to go back to Vagifem but just twice a week, this cleared up my watery discharge that burnt. I think the overload of Vagifem previously caused the thrush and BV. I was 80% of the way with my vagina. In May 2025, I saw Dr Shelia in Harley St. I told her how I was getting on and how my bladder felt good apart from my outside burning. She thought my main issue at that point was my vagina. I went away and decided to stick to a strict regime with barrier ointments and moisturising presseries. Again, I was 90% there, I then had sex a bit longer than normal and I was back to 20%!! I went back to my GP again there in July 2025. She thinks we have exhausted all options and that I have lichen sclerosis. I have been referred to a Gynae. My GP also gave me a steroid ointment regime. It has been day and night!!! I have consistently had a pain free vagina for a month now. So it was never one thing that was my issue. CUTI, Vaginal Atropy and possibly Lichen Sclerosis. 

I won't know for sure if I have Lichen Sclerosis until I get a biopsy. Now I just hope for pain free days. Every one of those days are a blessing. I'm 42 now, single. My last relationship broke down, some of the reason being the intimacy, sex etc. I pray I can live a full pain free life. I miss my gym, and I miss clothes that I can't wear anymore. I miss spontaneous sex!