Constantly Feeling Like I Have to Pee was Just the Beginning

It may sound strange that a long battle towards good health would start with something as innocuous as a constant feeling like I have to pee but it did. And although I am not fully healed from my persistent UTI, I have found many answers and treatment approaches and feel hopeful that this challenging time of my life is coming to a close. 

I want to share my experience in the hopes it may help others. Women continue to be victims of medical gaslighting, and I commend Live UTI Free for working on changing this. We need to be the voice for change. We need to get women the care they deserve. I cannot be silent.  

Quick Links:

• When Menopause is Not the Only “Change” >>>>
• Feeling Like I Have to Pee, But the UTI Test is Negative Test >>>>
• Settling Into My New Normal of Feeling Like I Need to Pee >>>>
• Physical and Emotional Setbacks >>>>
• The Road to Recovery >>>>

In late 2017 I began perimenopause. I had never had a UTI and was living an amazing life. I was a healthy 50-year-old, a Registered Nurse, a wife, a mom to furry and feathered pets, an active scuba diver, kayaker and gardener. Though I never got to have children, I branched my life out in other fulfilling directions. 

By the end of 2017, right before a scuba diving trip, I developed a symptom of feeling like I have to pee, even after going, and was diagnosed with Genitourinary Syndrome of Menopause (GSM). My family doctor started me on vaginal estrogen and, within two weeks, things improved. 

I went on with my life until the summer of 2018 when I developed insomnia and hot flashes, and my periods ceased. Menopause had finally arrived. I could barely function at work some days due to the lack of sleep. I asked my family doctor about oral estrogen. 

After he had helped me with my initial urinary issue of constantly feeling like I have to pee, I trusted him. He prescribed oral estrogen but insisted I didn’t need vaginal estrogen alongside it. All was good until February of 2019. 

That is when I started falling off a cliff. I got my first UTI and was prescribed a short course of antibiotics, which had little effect. 

Of course, my urine culture came back negative. I did some research and wondered if not using vaginal estrogen was the issue. My bowels had also started acting differently. I had read an article linking hormone replacement therapy to IBS. 

I worked with my family doctor as best I could to tweak my menopause management regimen. Because of the constant feeling of feeling like I have  to pee, I sought the help of a pelvic physiotherapist. 

One day, due to the intense pain and the feeling like I have to pee all the time, my pelvic physiotherapist sent me to the urgent care department of her medical center and— Hallelujah!—my urinalysis dipstick revealed blood. 

I was given a five-day course of antibiotics. The symptom of feeling like I have to pee abated in the first few days and then—Bam!—the frequency and burning returned. The culture test was negative. 

In June 2019, when the burning and need to pee intensified, I returned to my family doctor. Of course, the dipstick was negative, and I was made to feel like it was all in my head. I asked for a urine culture and tested positive for a high load of enterococcus. For this, I took a 7-day day course of antibiotics to little effect. I took 4-months off work to concentrate on getting myself better. 

Thankfully, through my employment benefits, I had a social worker who helped keep my mental health in check throughout my illness. On my physio’s suggestion, I sought a naturopath to address my gastrointestinal issues. She diagnosed me with a small intestinal bacterial overgrowth (SIBO).

In the spring of 2019, I visited a gastroenterologist for a colonoscopy, which revealed changes to the lining of the intestines. I was given more reflux meds and something to expedite gastrointestinal transit.

 I was being treated by body parts and not as a whole.

The weight continued to fall off – I had lost 15 pounds. The burning in my chest after eating was painful in addition to the pelvic burning and feeling like I have to pee all the time. I was fatigued and, at times, experienced shortness of breath. 

When the pain is so bad you want to die

One day, while attending a work meeting in downtown Toronto I had a huge scare, on top of my unrelenting bladder symptoms. After sudden and intense chest pains my nurse colleagues got me to Mount Sinai hospital where a left bundle branch block of my heart was discovered. 

Thankfully, no restrictions were placed on my activity. But this additional scare would result in more visits to the emergency room, and more instances of those around me believing this was all in my head. It was an extremely difficult time.  

During my leave from work, the burning chest and pelvic pain was so bad that I’d lie in bed wanting to die. Still, no one would listen. I am a nurse, I would think. Why won’t they listen? 

My pets needed me so I would get out of bed to tend to them. I would go out to my garden, and cry and pull weeds. I pushed myself to distract from the pain. A few times, the pain was so unbearable my husband took me to the emergency room. 

I was given anxiety medication, told that the emergency room wasn’t the place for me, and sent home. It took a toll on my marriage. My husband felt helpless. Having a social worker on my side helped me get through it. At first, I managed the SIBO with herbal treatments. When this stopped working, I began taking a gastroenterologist-prescribed antibiotic.

That summer, I also saw a urologist due to the blood that showed on my urine test back in the spring. 

She offered a type of antidepressant medication that can help to calm oversensitive nerves in the hopes of managing my pelvic pain and feeling like I have to pee after sex. 

I had an enterococcus infection again in August, but she refused to prescribe antibiotics, saying that the infection wasn’t significant and therefore didn’t need treatment. My family doctor finally gave me a 7-day course of antibiotics, again with no real effect. During the consultation, he gave me a repeat prescription so I would stop bothering him.   

In the fall of 2019, my gut was feeling better, but I continued to experience burning as my bladder filled as well as the feeling like I have to pee all the time. I continued to see my naturopath and pelvic physio and went back to work. 

I switched to a new family doctor who I hoped would be more compassionate. The urologist offered me medication for an overactive bladder, based on feeling like I have to pee all the time, but after researching the side effects I declined to take it. 

My pelvic physio mentioned that she had another patient doing a MicroGenDX test and suggested I do one in the new year if I hadn’t made any progress. 

Approaching an upcoming dive trip, my SIBO returned, and my urethra burned. ‘This is going to be fun,’ I thought, deflated. I stocked up on antibiotics in the hope that they would see me through the trip. 

Getting Closer to Answers

When researching MicroGenDX testing, I stumbled upon Live UTI Free. I corresponded with Melissa and sought doctors in Canada that could help me get closer to eradicating my pain and always feeling like I have to pee. Melissa and Live UTI Free’s website were a huge help to me in this journey. 

I ordered a MicroGenDX test and convinced my new family doctor to sign for it. After countless negative cultures, my MicroGenDX test came back with several bacteria. In hindsight, it was a biofilm that had been hiding them. 

Eureka! I thought. They will have to treat me now. 

I made an appointment with my family doctor, and he had no idea what to do because there was no E. coli or the usual UTI-causing bacteria to treat. 

He said I should reconsider the overactive bladder medication the urologist had recommended. He referred me to an infectious diseases doctor. I left defeated. 

Afterwards, I posted in an Interstitial Cystitis group on Facebook about my MicroGenDX test and chatted with a patient of Dr. Stewart Bundrick, a Louisiana urologist who specializes in chronic UTI. 

This chance meeting was life changing. She introduced me to Facebook groups for women suffering from chronic UTIs like myself and, ultimately, to Dr. Bundrick. By then it was January 2020. I called his practice and secured an appointment in March. 

My naturopath advised me to do a gastrointestinal test for dysbiosis—an imbalance in the gut’s microbiome—and, despite not specifically screening for parasites, we found Giardia, a tiny parasite that causes the diarrheal disease giardiasis. It took some convincing to get a Canadian doctor to prescribe a two-week course of antibiotics to treat it. 

Turning a corner

When the Canadian border was about to close due to the COVID-19 pandemic, I flew to Louisiana for my initial consultation with Dr. Bundrick.  He responded to my story with empathy, and I could tell he had heard countless similar tales from patients that came before me. He recommended taking a 12-month course of antibiotics, saying he wouldn’t be surprised if I had E. coli as well as enterococcus in my bladder wall. 

I left feeling heard for the first time in a long time. 

The next day I flew home with 3-months of medication. I sent my family doctor the script and a doctor’s note informing him I had chronic bacterial cystitis. He called and surprised me by offering to help me obtain the medication in Canada. After feeling unsupported in the past, his kindness was unexpected.

I understood that he had no idea bacteria could become embedded in the bladder wall if initial infections weren’t properly treated. 

He was also not aware that the urine testing method so often used was developed back in the 1950s and not equipped to detect a variety of bacteria.  

I started the medication, beginning the long journey to get rid of the embedded infection. I sought help from another Canadian doctor about my SIBO. He understood the importance of MicroGenDX testing and ultimately helped treat my SIBO while supporting my new treatment regimen with supplements to help ward off C. diff and other issues. 

It was a rough summer, but my SIBO went into remission for more than a year. My bladder pain and the constant feeling like I have to pee started to abate but when E. coli reared its head, we added an additional antibiotic to the treatment regimen. 

When my closest friendship broke down due to my chronic health issues not being resolved quickly enough, I suffered physical and emotional setbacks. Around this time, yeast was discovered in my gut which we treated with an antifungal medication. 

Not long afterwards, I was able to come off the reflux medication I’d been taking for more than 20 years.  

My best hope for healing

In spring 2021, I developed Achilles tendonitis due to one of the antibiotics, so we tweaked my treatment regimen. In November, I decided to pursue fulguration— a procedure that uses heat to destroy abnormal bladder tissue. Though it came at a considerable expense, it seemed like my best hope for healing. I traveled with another Canadian to Louisiana for the surgery. At least this time I knew where I was going! 

My post-op report made me feel vindicated. 

I had inflammatory polyps in my bladder neck that appeared to be from bacteria embedded below. The biopsy revealed cystitis cystica—chronic irritation of the urothelium due to infection, and ruled out cancer. My trigone, at the base of my bladder, had lots of metaplasia from the chronic infection. 

Learn more about the various ways bladder tissues can be impacted by bacteria.

The road to recovery was far from smooth. At times, I wondered why I’d had the fulguration. My symptoms would flare, I would once again feel the constant need to pee, and I felt like I was going backwards. 

Around Christmas, I noticed something seemed off. I did a MicroGenDX test while on antibiotics and up popped enterococcus. When I did a different advanced UTI test, there was Klebsiella pneumoniae. 

We continued onward but I wasn’t progressing like I had been. 

I ceased antibiotics because, of course, the Klebsiella pneumoniae was resistant to my current meds. I resumed taking antibiotics and, when we retested a month later, E. coli popped up. 

When we added in a new antibiotic, I felt amazing! I thought I was well on my way to discontinuing treatment by early fall. Even after sex, my symptoms didn’t flare. And then, just before a scuba trip to Fiji in July, my meds seemed to lose their effectiveness after sex. 

I still felt good overall. I took a brief break from my meds and another advanced urine test detected a new organism. 

Taking a specialist-prescribed antibiotic seemed to be my best option but it had an increased risk of severe side effects.I ended up traveling to the USA to obtain it as I didn’t know a specialist in Canada who would prescribe it.  

Maintaining quality of life

I was able to take my trip and had a great holiday. Thankfully, my symptoms have remained manageable enough not to prevent me from enjoying what I love most: Being in the water and experiencing nature. 

My love of animals also helped sustain me throughout my illness. I even opened up an online jewelry and t-shirt business in January that gives back 25% of the proceeds to animal sanctuaries. I continue to work full-time as a nurse but am getting closer to retiring. 

Amazingly, my marriage is stronger than before I became ill. I truly believe fulguration brought my bacteria to the surface. 

Though the recovery was hard, I made a great bladder buddy who has become a dear friend.

We had fulguration on the same day and, coincidentally, her name is Cindy too. We support one another and message each other daily. It has helped keep both of us sane. If I had my time again, I would absolutely choose fulguration.  

Taking care of your mental health is a crucial part of the journey and should not be overlooked. For me, advanced UTI testing was a game changer in helping me access the right medication.  

My recovery is finally in sight

I have come so far in this journey and know that I’m nearing complete recovery. I am off antibiotics and on a trial of only Hiprex. We need more physicians taking chronic infections seriously. Too many women are brushed off and told that their symptoms are all in their head. 

What happened to the basic act of listening to patients? 

If I found navigating the medical system difficult as a nurse, I wonder how others manage to advocate for themselves in this difficult journey, and how many fall through the cracks. When I look back now, I see how far I have come. I hope that others will benefit from reading my story, and I hope that physicians gain a deeper understanding of the patient experience because we deserve better. If you’re suffering as I was, don’t give up.   

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