My Journey to a Ureaplasma Diagnosis: What I Learned About an Overlooked Infection

The beginnings of a new relationship unexpectedly marked the start of a difficult health journey with Ureaplasma. Shortly after beginning to see my significant other in the winter of 2022, I started experiencing recurrent urinary tract infections (UTIs). What followed was a frustrating series of doctor’s visits, ineffective treatments, and lingering symptoms that eventually led me to uncover an underdiagnosed culprit: Ureaplasma urealyticum.

This story details my path to diagnosis, the challenges I faced, and why I believe medical professionals need to rethink how they approach this infection. 

The Onset of Symptoms

It started with recurrent UTIs that became a persistent issue. I sought help from two different doctors: first, a gynecologist and then a urogynecologist. The initial recommendation was a year-long course of daily antibiotics—a treatment plan I declined due to concerns about the impact of prolonged antibiotic use on the gut microbiome and overall health. Instead, the second doctor prescribed methenamine (also known as Hiprex) along with an expensive sublingual vaccine imported from Spain. Hiprex is a prophylactic urinary antiseptic, meaning it is intended to prevent future infections. So, I had to treat the UTI first with a standard dose of antibiotics before I could take Hiprex. However, once I could, the Hiprex worked very well.

The methenamine proved to be a game-changer for my UTIs. For anyone dealing with recurrent UTIs, I believe methenamine is worth considering as an alternative to antibiotics. Taking it immediately after intercourse and for one day afterward helped me immensely. However, while I was able to get the UTIs under control, I developed new debilitating symptoms.

Unbearable Pain and a Long Search for Answers

The most agonizing symptom I experienced was severe vaginal burning, which was a 9/10 pain that felt like a curling iron that was on the inside of my vagina. I sought out a pelvic pain specialist who prescribed a regimen of gabapentin, estrogen gel, and muscle relaxer suppositories and referred me to a pelvic floor physical therapist (PT). While these interventions provided some support, I knew deep down that the pain wasn’t solely related to pelvic floor dysfunction.

After three months of treatment with minimal improvement, I turned to my own research. That’s when I came across Ureaplasma, a bacterium often associated with recurrent UTIs and pelvic pain.

There are two main species of Ureaplasma, and it’s not uncommon to find either or both in the lower urogenital tracts of healthy adults. The clinical role of Ureaplasma parvum and Ureaplasma urealyticum in lower urogenital tract infections in females is understudied. Ureaplasma parvum has not been shown to be associated with symptoms, nor to require treatment, although more research is needed. Ureaplasma urealyticum, however, has been linked to urogenital symptoms, infertility, and pelvic inflammatory disease.

Overcoming Medical Resistance to Testing

When I first asked my doctor to test me for Ureaplasma, she strongly resisted. The rationale was that Ureaplasma is typically considered commensal, meaning it is thought to be a normal part of the healthy urogenital microbiome in some people.  It is not routinely tested for nor treated. Although Ureaplasma is considered commensal, it is not found in all urogenital microbiomes. 

But this reasoning highlights a significant flaw in the medical approach: if Ureaplasma is rarely tested for, how can we truly know how many people have these organisms in their microbiome, and whether they are associated with symptoms or other issues? Without widespread screening, the data remains inherently biased, potentially underestimating the prevalence and impact of Ureaplasma. 

For example, many women report having trouble becoming pregnant or struggling with recurrent miscarriages, only to finally be diagnosed with and treated for Ureaplasma, leading to the ability to have a successful pregnancy. These women were “asymptomatic” until they began to try to have children. 

I think it’s also important to note that research has linked Ureaplasma to endometriosis, which I was subsequently diagnosed with and treated for through laparoscopic surgery. Again, another symptom that doctors would not have considered as potentially related to Ureaplasma had they not tested.

Determined, I sought out another doctor and firmly insisted on being tested. The test itself is simple, requiring only a vaginal swab or urine sample, and is easily processed by labs like Labcorp. It’s important to note that Ureaplasma will not be detected by a standard urine culture. Detection requires a specialized culture or a PCR test. When my results came back, they confirmed I had Ureaplasma urealyticum.

Treatment and Recovery

Based on my research, I requested a specific treatment protocol: 14 days of doxycycline followed by one dose of 1 g azithromycin and then three days of 500 mg azithromycin. I opted for a 14-day course of doxycycline rather than the often-prescribed 7 days after reading about others who experienced incomplete eradication with shorter treatments. My goal was to eliminate the infection with a single, effective regimen while minimizing the risk of antibiotic resistance.

Four weeks after completing the antibiotics, I retested using both a swab and a urine sample. The results showed that the infection was cleared. 

While my quality of life has improved dramatically, I am still dealing with residual symptoms, including vaginal burning, dryness, and pain after intercourse. Imaging revealed that the tissue of my vaginal wall was badly damaged due to the untreated infection. I’ve started Platelet Rich Plasma (PRP) injections (which, I should note, is a new and emerging therapy and is very expensive) in hopes of promoting healing. I also continued working with pelvic floor PT and other specialists.

Lessons Learned

1. Doctors’ Knowledge Gaps: Many healthcare providers are unaware of or reluctant to test for Ureaplasma. Unless you ask to be tested, it’s unlikely that you will be. I believe it’s a major blind spot in the medical world right now. This isn’t unique to my case; countless others have shared similar stories of resistance, leaving them feeling dismissed or helpless.
2. Data Misrepresentation: The claim that Ureaplasma is largely asymptomatic cannot be accurately substantiated without adequate testing. Individuals suffering from recurrent UTIs, pelvic pain, infertility, or miscarriage may unknowingly harbor this infection. Without testing, these cases remain uncounted, skewing the perceived prevalence and symptomatology of Ureaplasma.
3. The Cost of Delayed Diagnosis: If I had been tested for Ureaplasma at the onset of my symptoms in winter 2022, I might have avoided thousands of dollars in medical expenses, hours spent in appointments and therapies, and the lingering physical and emotional toll of untreated infection. The psychological impact of chronic pain is something that should not be ignored.

This journey impacted me not only physically, but also emotionally. Going through this process felt scary, lonely, and depressing. Having my body suddenly fall apart while “top of their field” doctors kept misdiagnosing me made me feel hopeless and like I was losing my mind. 

But by doing my own research and learning to stand up for myself more firmly, I found a real sense of empowerment. My ongoing symptoms still take a mental toll, but I’m making sure this emotionally challenging experience doesn’t go to waste by spreading awareness to help others who might be going through something similar.

Recommendations

For anyone struggling with recurrent UTIs or chronic pelvic pain, I urge you to consider screening for Ureaplasma as part of your diagnostic process. If you test positive, both you and your partner (if you have one) need to be treated to help prevent reinfection. The test is straightforward, and early detection may save you from prolonged suffering.

To medical professionals, it’s time to reconsider the standard approach to Ureaplasma. We need more robust testing protocols and a willingness to investigate this infection as a potential underlying cause for persistent urogenital symptoms. Only then can we gain a clearer understanding of its true impact on patients’ health.While my journey has been challenging, finding a diagnosis for Ureaplasma has brought me closer to recovery. I hope that sharing my experience helps others advocate for their health and pushes the medical community toward better awareness and treatment of this often-overlooked infection.