Samantha’s Chronic UTI Story

03 Sep Samantha’s Chronic UTI Story

Reading Time: 8 minutes

When Samantha felt a urinary tract infection (UTI) come on, a negative test at the Emergency Department sent her on a pathway she never expected. In no time she was diagnosed with interstitial cystitis (IC) and she underwent repeated procedures and trialled a huge variety of medications that did nothing to stop her bladder symptoms becoming worse.  When she exhausted all options offered by her doctors, she turned to an online group for emotional support.  When she heard about chronic UTI and the diagnostic failures of UTI dipstick and culture tests, she instinctively knew this was what she had been going through for the past six years and sought the advice of a doctor who knew how to diagnose and treat chronic UTI.  With endometriosis, an ovary cyst and pudendal neuralgia having also been diagnosed, she took a multi-faceted approach to her treatment. Nine months in, Samantha is relieved to feel normal again and she has become passionate about encouraging people with confusing health conditions to find the strength and support to advocate for their own health.

It all started with a UTI and a negative dipstick test

My name is Samantha, I am 30 years old, live in Brisbane, have no children and this is my story.

In October 2014, I was away with my partner one weekend when I felt the familiar burning of a urinary tract infection (UTI). I suffered for the last night away and then went and saw a random general practitioner (GP) on a Sunday. She did a dipstick test and told me there was no infection and she suggested I was potentially imagining the pain. She sent me home. The next day I went to my regular GP who did another test and told me there was no infection but gave me a few days of antibiotics as well as telling me to get treated for thrush just in case.

My symptoms got worse—frequency, urgency, burning, bladder pain etc. The next trip was to the Emergency Department (ED). I was not even seen properly and the ‘doctor’ that saw me simply did a full STD check and test and again made me take medicine for thrush. As I was leaving, I noticed on the paperwork that she was an intern—the hospital did not even think it would be worth me seeing a qualified doctor.

 

A specialist diagnosed interstitial cystitis at the first appointment

I was in a total panic. I spent a lot of time online researching and finally searched the phrase “feels like a UTI but it isn’t”.  This is when the information on interstitial cystitis (IC) came up. I booked in with a specialist straight away. He confirmed that IC was what I had just from my first appointment describing my symptoms. As he was a public hospital doctor, I did not see him again and instead went to another specialist for a second opinion, this time in private health.

The new doctor recommended a cystoscopy, hydrodistension and urethral dilation as well. He gave me some medication to relax my bladder, but the symptoms did not stop. I had the recommended procedure and the pain was terrible after. I have photos from the procedure that showed my bladder lining was bright red with glomerulations and pin prick bleeding in all four quadrants of my bladder. I was in a total depression and ended up having to leave my job in accounts in February 2015. I continued to seek other doctors’ opinions—urologists, urogynaecologists, pelvic floor physios etc.

I pretty much gave up hope of ever being normal again. Not only did I stop working, but I could not have sex and I stopped going to gym which was a big thing for me as I used to be a very successful fitness model from 2009 to 2014.  I became very depressed.

This was my life for five years. I was barely getting by. During this time I underwent another half a dozen procedures (more cystoscopies, hydrodistensions, urethral dilations, steroid injections, Botox injections);  I trialled many medications (Vesicare, Endep, Elmiron, tapantadol Palexia, Cymbalta, nortriptyline, buprenorphine, metoclopramide, prochlorperazine etc); and I even spent a week in a hospital doing a ketamine treatment infusion through my stomach. This was the worst decision ever. I had done years of pelvic floor physio, used a TENS unit, lived on the ‘IC diet’, and was so careful not to consume anything that would affect my angry, bleeding bladder. I had tried everything.

I pretty much gave up hope of ever being normal again. Not only did I stop working, but I could not have sex and I stopped going to gym which was a big thing for me as I used to be a very successful fitness model from 2009 to 2014. I became very depressed.

 

My UTI symptoms were worsening and my mental health was in a downward spiral

Fast forward to November 2020, I had a terrible flare up of my symptoms to the point I was at the ED begging for help twice in one week. The first time they did not even let me see a doctor—it was a nurse who told me I did not have an infection in the waiting area! She did not do any type of physical or visual exam.

The second time, a week later, I woke up vomiting and had a fever and severe lower back pain. I had a GP appointment anyway so I got my husband to drive me.  I nearly passed out in his office and I was told I had a high temperature and to go straight to the hospital ED. When I got there, the triage nurse was frustrated that my GP did not run any tests and she said it was unfair to the other patients waiting that he hadn’t done this. I then told her if she checked the records, she would see that I had been to the ED a week earlier and they also did not run any tests. She seemed surprised but took me straight to a bed. They gave me fentanyl for pain relief and did an ultrasound where they found a cyst on my ovary, but I knew that was not the source of this pain. They sent me home and I spent two weeks in a constant state of fever—I was very nauseated and so tired I could hardly get out of bed.

I was panicking at how I had deteriorated and that nothing was helping. One night, very late, I took myself downstairs so my husband would not hear me crying. I was so exhausted from being in pain all the time and felt like such a burden to him. I just wanted the pain to end and I did not think it ever would.

I was spiralling mentally and as a last resort I jumped on Facebook and joined a dozen IC groups in hopes I could talk to someone or find something useful. I came across a thread where someone mentioned an embedded infection.  I had never heard of this before. The comment was quickly deleted as the IC group was very against this idea. I am so eternally thankful to that person because this information is what lead me to investigate chronic UTI, which can be treated with long term, full dose antibiotics.

 

I knew a chronic UTI is what I had

I joined the support group that was mentioned and started reading and reading. As I was reading the stories, I knew it all lined up. I could feel it. This was me! I started to look at how I could be treated for this infection and realised the doctors that specialised in diagnosing and treating chronic UTI were in London. I started checking flights to go to London to see Professor Malone-Lee and put them on a document to present to my husband as soon as his eyes opened. However, luckily, I found a Brisbane GP that understood how to treat chronic UTI and would prescribe the treatment I needed. I booked in that very night for about a week later. I met with him and he gave me antibiotics which I started immediately. It was 4 x 500mg cephalexin a day.

After 10 days I felt a huge improvement. At the two-week mark most of my symptoms were gone. I actually slept through the night and was having no toilet breaks between going to bed and the next morning, which was unheard of for me. I was able to return to the gym and honestly feel like a whole new person. I even had some alcohol without terrible pain. It was a miracle. To go from the mindset of “incurable disease of interstitial cystitis” to “curable urinary tract infection” was a total game changer.

I would like to also mention that I did end up seeing a new gynaecologist in February 2021 for the cyst to be removed and he did find “extensive endometriosis” which he removed as well. Additionally, he did a diagnostic nerve block and diagnosed me with Pudendal Neuralgia (PN) as well. PN can cause bladder symptoms including urethral burning and frequency. I wondered why no one had ever told me that the pudendal nerve could cause these symptoms including a pelvic floor physio I had seen for a year. He then gave me another block, this time with steroids for long lasting relief, and it helped immensely. I have had two of these this year and have continued pelvic floor physio with someone new and made great progress. I can even tell the difference between the pain cause by my chronic infection and my pudendal nerve based on my activities.

I have been on antibiotics now for nearly nine months and I feel great. I do take a probiotic but have not had any issues with my stomach or even thrush, which is amazing.

I pretty much gave up hope of ever being normal again. Not only did I stop working, but I could not have sex and I stopped going to gym which was a big thing for me as I used to be a very successful fitness model from 2009 to 2014. I became very depressed.

Be your own health advocate 

I feel that, like a lot of women, my problem was multifaceted. A lot of the time there are overlapping problems which can be overwhelming and confusing, particularly when different doctors specialise in different areas. I feel that the antibiotics have made such a big difference in my life and that a chronic UTI was my problem all along. However, I also had endometriosis and pudendal neuralgia which did impact on the severity of my symptoms as well. The great thing is the diagnostic nerve block was able to tell me 100 percent if I had this issue and the procedure to check for endometrioses was a 100 percent diagnosis as well. After six years no one had suggested either of these conditions to me, so I am very thankful that my latest Brisbane gynaecologist investigated it and treated it.

My advice to anyone on this path is that you need to be your own health advocate. You need to push and push and push for all the necessary tests to be done to rule out what you need to. I would not be against a cystoscopy even if you think you have a chronic UTI, to ensure there are no other serious issues. As much as going under for a procedure is daunting, I am so glad I took control and investigated these issues properly so that they could start to be dealt with. I also encourage people to do their research when it comes to antibiotics. There is a lot of misinformation about taking antibiotics and I have had not a single negative side effect from my full dose and long-term antibiotics this entire time. I will stay on them until my doctor and I are satisfied that my symptoms have fully gone.

I am truly living a new life now and I am excited about the future. I did not think this was possible.

 

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