LETTER TO EDITOR: Physicians Respond to Woman’s 8 year UTI Diagnosis Journey
Recently we published a patient experience detailing a young woman’s 8 year journey to discovery of an embedded UTI and the role that advanced diagnostics played in discovering answers. We received immense support from the online community of sufferers of cUTI, IC and other relevant urinary infections for sharing and supporting patient stories like Sierras.
We also received feedback from physicians who felt compelled to respond to Sierra’s experience. We have included those responses below.
Board Certified physician Dr.Thomas Rechtschaffen, of Advanced Urology Centers of New York, felt deep empathy for Sierras story by saying;
“When I started in practice almost twenty years ago trying to break into a community with many other urologists, I would get all of the patients that nobody else wanted- women with chronic UTIs and chronic pelvic pain. I devoted myself to digging deeper than other doctors would, looking for patterns, trying to find answers for these women. The first and most important part of my care was to listen to them and hear their struggles. They’d often seen many physicians before they came to me and were told that all of their tests were “normal” and that would usually be followed by dismissive advice. I have learned that taking their stories seriously and emphasizing that this is not all “in their head” and that there is something actually physiologic that is causing symptoms is a shift in perspective that many of my patients need to hear. Outlining a plan with them including- elimination diets with nutritional counseling, use of medications which address inflammation and nerve sensitivities (and not just another antibiotic prescription), use of neuro-stim devices and relaxation techniques, has given my patients the gift of empowerment over their condition.
Over the years I’ve made sure I stayed current with all of the relevant research and would look to use approved treatments in innovative ways to help them. Advanced diagnostics of urine specimens has opened up a whole new world of treatment options to women who have been told time and time again that they don’t have a UTI, or have just contaminated samples. It has elucidated the urinary microbiome, including the balance of harmful bacteria to healthy bacteria. When that balance is off, its another pathway to help my patients overcome this disease.
While I commend Sierra in her persistence to find a doctor who knew enough to get her the right diagnostic tools and treatments, it should not have to be that hard. While ultimately I would hope for a world where all doctors can help patients like her, for now I’m encouraged that there is online information available like MyUTI to help match up these patients with doctors who focus on these conditions.”
Dr. Lauren de Winter of Complete Women Care in Long Beach, California, whose experience as both a physician and female informed her reaction to Sierra’s journey, replied to our post saying;
“I went into Urogynecology to help women with prolapse, UTIs, and incontinence, but discovered that my specialty is one of the few that has the tools to care for women with bladder pain and infections. I feel very strongly that treating women with BPS/IC is a top priority for me as many physicians are not comfortable treating these conditions. Sierra is not alone in her struggle to find a provider to help her with her pelvic pain, bladder pain syndrome/Interstitial Cystitis (BPS/IC) and recurrent UTI’s. The average patient with BPS/IC sees 8 doctors before the diagnosis is made. Although some cases of BPS/IC improve spontaneously or with treatment, many continue or recur, causing debilitating and difficult to describe pain. Women with BPS/IC frequently suffer from endometriosis, vulvodynia, or other pain conditions and the underlying bladder issue can be missed. In recent years, research on how doctors treat women’s pain symptoms has revealed that physicians tend to minimize women’s pain, not treat it, or not believe them. Women of color have an even harder time finding a doctor who believes them and treats their pain adequately.
Finding a specialist is extremely important, especially when first line treatments have not been effective. Women are more likely than men to have both bladder infections and bladder pain and research is only in its infancy to determine what causes BPS/IC. On the bright side, treatments and diagnostics are getting so much better as we learn more about the normal and abnormal flora of the bladder and the biofilms that harbor bacteria.
I commend Sierra for fighting to receive care, and hope in the future that fewer women need to do this. The multimodal treatment she is now pursuing is often the best way to alleviate the physical pain, and support groups for BPS/IC can be a great way to improve the suffering that women experience due to the isolation and frustration of the condition.”
MyUTI was developed as a solution to an education and access gap for patients to discover infections that current urine cultures fail to identify. Bridging with evidence-based solutions for sufferers has lead us to hear countless stories of women sharing a similar struggle on their UTI journey. >>LEARN More
We greatly appreciate those physicians who are willing to speak up about this issue so many women are facing, especially because the aforementioned knowledge gaps and subsequent misinformed beliefs are not solely held by patients but also by many practitioners. We aim to amplify the voices of patients and supporting physicians to impact change and betterment of the standards of care for patients suffering from recurrent, chronic or embedded urinary tract infections (UTI).
For tips to talk to you clinician about your recurrent UTIs, DOWNLOAD this free resource.
