Navigating Recurrent UTI with Dr. Sula Windgassen, Health Psychologist

In this video series, health psychologist and cognitive behavioral therapist Dr. Sula Windgassen looks at the psychological ramifications of chronic and recurrent UTI and how to decrease these negative consequences, possibly through work with a counsellor. 

Dr. Windgassen’s own battles with urinary problems led her into the health psychology field as she discovered the measurable effects of the mind-body connection, including how managing stress through mindfulness practices can reduce symptomatic experiences. 

Jump To Section:

• Observing The Mind-Body Connection  >>>>
• Finding The Right Health Psychologist To Support You  >>>>
• Breaking Behavioral Patterns With A Health Psychologist  >>>>
• Talking With Friends About Chronic Illness  >>>>

Everybody has automatic coping mechanisms when it comes to dealing with UTI flare-ups, but are these techniques helpful or do they generate further distress? Dr. Windgassen advocates working with a counsellor or supportive friend to recognize, deconstruct, and evaluate your mechanisms before adjusting them to make sure that your behavior promotes emotional wellbeing. 

In addition to providing guidance on navigating UTI and mental health, Dr. Windgassen also offers tips on discussing chronic UTI with friends and family, preparing for a difficult discussion with a sexual partner, and finding meaning while dealing with a chronic illness.

Check out summaries of our video interview with Dr. Sula Windgassen below, or watch the full interview on our YouTube channel. 

Dr. Windgassen first ventured into the realm of health psychology as a patient, seeking a diagnosis and treatment for her chronic urinary symptoms while suffering from the associated anxiety and depression. 

On the advice of her father, she cultivated a mindfulness practice and quickly noted the positive impact it had on her pain and other sensory awareness as well as her stress levels – which affect the body’s rate of success when fighting infection. Dr. Windgassen was fascinated by the interaction between her mental and physiological experiences, and this motivated her to become a health psychologist and cognitive behavioral therapist.

“[Everyone who experiences a chronic illness] will know that you just have to do your own research because you feel entirely clueless after a lot of these appointments.”

As a health psychologist, Dr. Windgassen underscores the prominent role that the brain plays on chronic pain and sensory-based symptoms. This role does not mean that the problem is ‘all in your head.’ Rather, the brain magnifies and maintains sensory awareness, and this can result in the persistence of certain symptoms, even if treatment is taking effect on a physical level. 

Working with a health psychologist via cognitive behavioral therapy (CBT) or other therapeutic approaches can help to tackle this brain/pain encoding. 

How Health Psychologists Can Help You Navigate Chronic UTI

For many, enlisting the support of a health psychologist to help manage the stress of navigating the healthcare system can be beneficial. Oftentimes, individuals with chronic illnesses must research their condition, advocate for their care, and make crucial decisions. This, coupled with the anxiety of physical suffering and not knowing when that suffering will end, is extremely taxing. 

“If the entire time you’re going down that route [in search of effective treatment], you’re feeling really, really anxious, and you can’t disengage until you’ve got that answer, that’s just going to make the whole process completely more taxing and unbearable.”

Dr. Windgassen recommends a biopsychosocial medical approach that addresses not only the physical symptoms, but also the psychological impact of the associated acute and chronic anxiety. A health psychologist can additionally act as a sounding board for isolating patterns and determining next steps. 

This can be helpful since the stress of chronic illness makes it more difficult to process information. A dedicated health psychologist can also help you navigate and cope with the effect of chronic or recurrent UTI on other elements of your life. 

It’s no surprise that having a chronic or recurrent UTI can cause anxiety – but does that mean that you now have an anxiety disorder? And while anxiety can exacerbate symptoms, what about healthcare practitioners that insist your anxiety is causing your urinary problems? 

Dr. Windgassen highlights the issue of certain emotional responses to chronic illness, such as anxiety and depression, being inappropriately considered a diagnosis. She posits that these reactions should instead be categorized and treated as adjustment issues. 

Individuals who feel that they have been mislabeled by a diagnosis that does not account for the entirety of the situation are encouraged to discuss this with their healthcare provider, and to find a new one if this interpersonal match feels incongruent. 

When it comes to selecting a health psychologist to assist you through the challenges of chronic or recurrent UTI, Dr. Windgassen suggests finding someone who fulfills the following categories:

• Accredited by a prominent regulating body
• Familiar with the subset of health psychology
• Experienced in treating people with health problems or adjustment issues

She then recommends connecting with that professional to determine if you feel comfortable and confident working with them.

Like many UTI patients, one of our community members, Cassidy, experienced this cycle of UTI and anxiety. You can read a first-hand account of how Cassidy utilized mindfulness and calming techniques as part of her recovery protocol.

When Chronic UTI Leads To Trauma Imprint

Some people who suffer from chronic or recurrent UTI develop either a significant traumatic imprint or post-traumatic stress disorder, which is characterized by a sense of reliving the experience in some form, hypervigilance and irritability, and avoiding situations that have become associated with UTI. 

“Being stuck on the toilet in excruciating pain… and worrying about an upcoming call… is traumatic.”

This can result in a sense of panic and despair whenever you feel a symptomatic twinge, even if it does not manifest into a full-blown recurrence. In these moments, Dr. Windgassen recommends focusing on calming the body down through breathing exercises that trigger the parasympathetic nervous system, instead of shifting into problem-solver mode. The latter often leads to racing thoughts and increased anxiety. 

She emphasizes being patient with yourself as feelings of worry in these moments are generally persistent. Repeated breathwork will likely be required to achieve the immediate goal (leaving the bathroom, for example) via incremental steps.

When it comes to ignoring the perpetual sensation of needing to urinate, Dr. Windgassen suggests keeping a mental score of how much you have drank to determine whether the urge is based on a true biological need or if it is the nervous system misfiring. 

If it is the latter, she encourages ignoring the need as best you can and focusing on other elements of the present moment. During this process, maintain an awareness that you are attempting to retrain your brain – which is not an easy feat! 

She reiterates being kind to yourself in these moments and remembering that, even if your bladder does draw your attention, the act of attempting to ignore it is quieting the faulty signals.

Most individuals with a chronic or recurrent UTI have a behavioral pattern of how to cope with symptoms. But is your pattern increasing your anxiety or sense of despair? 

Dr. Windgassen recommends partnering with a health psychologist to determine which behaviors increase anxiety levels or promote negative thought patterns. 

“When we’re anxious because of our physical health and because of experiences that we’re going through, that anxiety then rules a lot of stuff in terms of how we see things from our perspective.”

For example, avoiding a social situation following a symptomatic twinge out of fear of escalation may seem like a sensible precaution. Yet, such catastrophizing may result in needlessly missing out on positive experiences and an increased sense of debilitation. 

Working with a health psychologist can help identify these traps that lead to psychological despair. You can brainstorm new behavioral responses to experiencing a symptomatic twinge. 

However, Dr. Windgassen states that it is important not to attempt to alter all behaviors at once, but rather to identify and dissect behavioral responses systematically. Then, make changes one at a time to determine and maximize the benefits. 

Talking To Your Partner About UTI And Sex

When it comes to sex and UTI, Dr. Windgassen acknowledges the many challenges. Determining the link between the two, managing anxiety, and having difficult conversations with your partner are a few of these challenges. 

She notes that while sex certainly can result in a UTI, it can also lead to irritation that can mimic UTI symptoms. She suggests writing down when sexual activity does and does not lead to a UTI to have a realistic idea of your risk level. 

This can help you predetermine, experiment with, and record the effect of preventative behaviors like urinating before and after sex, washing yourself afterwards, etc. Furthermore, she recommends ‘scaffolding behaviors’ between total abstinence and unrestrained penetrative sex. 

This means experimenting with small steps and being aware that each sexual experience may result in a different level of response depending on your current health. Additionally, be patient with and kind to your body, and understand that the sense of intimacy with your partner does not have to be lost.

“If you can see the link between some of these safety behaviors or avoidance behaviors in maintaining anxiety and some of these thought processes, then you can experiment. … because it’s just not going to be helpful to try and drastically change everything.”

Wherever you are with sex and UTI, communication with your partner is vital. However, such conversations can be daunting. 

Dr. Windgassen advises preparing for the discussion in advance by writing out your worries, fears, and goals. Empathetically consider your partner’s reaction and decide in what areas you would be willing to compromise if, for example, you are unable to engage in any sexual activity. 

If you are still apprehensive, she recommends speaking with an objective outsider such as a friend or health psychologist beforehand, or potentially turning to a relationship counselor. 

It is human instinct to help another, especially when we see them suffering. However, it can be infuriating and infantilizing when well-meaning friends and family make first-line-defense recommendations. “But have you tried cranberry juice?!” 

This ignores the countless hours of appointments, research, and contemplation linked with chronic illness. As a result, it can be difficult not to become irritated and snap back at somebody who is only trying to help. 

Dr. Windgassen suggests writing out a response ahead of time that acknowledges the person’s good intentions while informing them of your expertise-through-experience and your desire to avoid unsolicited advice. Practice delivering it out loud beforehand so that, when the moment arises, you’re able to shift topics while keeping your irritation levels low and not hurting the other person’s feelings. 

She also recommends preempting the conversation by sending out a text message acknowledging others’ desires to help and explaining why you would rather they hold onto their suggestion until you ask for it.

When Chronic UTI Results In Social Challenges

A secondary challenge associated with chronic or recurrent UTI is that some friends are incapable of providing the emotional support you need or being patient while you tend to yourself. 

After all, chronic or recurrent UTI can feel not only physically but also psychologically and temporally all-encompassing. Sometimes friends don’t know how to respond when you are in that state, which can come across as if they don’t care. 

Dr. Windgassen advises talking with a health psychologist or confidant about determining which relationships are still valuable while you’re at this stage. You can also consider how to communicate your needs to these individuals and which friendships should be let go because they are no longer beneficial. 

“Sometimes it is working out, okay, these friendships were valued friendships at one time – but now that I’m in this place, they’re not going to be sustained because those people aren’t going to be able to meet me where I am.”

This can be very challenging, and difficult not to misinterpret as a personal failing on your part. Having another person to discuss this with helps maintain perspective and organize your thoughts.

Identifying Your Values

One of the most distressing impacts of a chronic or recurrent UTI is the sense of a loss of control in terms of your ability to socialize, have sex, engage in certain activities, etc. For many, it can feel as though you are wasting your life on the toilet or under the blankets. 

To reclaim this sense of control over how you spend your time, Dr. Windgassen recommends making a list of values and, subsequently, activities that promote these values. Then, divide this list of activities based on symptom levels. Categories may be activities that can be done when you feel asymptomatic, symptoms are mild to moderate, and symptoms are moderate to severe. 

That way, when you find yourself unable to take part in what you would really like to be doing, you are reminded of the practices you can engage in despite being restricted, or bedridden with a heating pad. 

“What you want is a nice spread of things that you can do when you’re feeling a bit better, when you’re feeling a bit depleted, and when you’re feeling completely depleted, so that you’re always able to to exert some control on living a valued life.”

Acknowledgements 

Navigating through diagnosing, treating, and recovering from a chronic or recurrent UTI can be extraordinarily challenging. For this reason, engaging with a health psychologist to help support you through these processes can be beneficial for your emotional and mental well-being, and the relationships in your life. We want to thank Dr. Windgassen for sharing her personal and professional insights with us, as well as bringing more awareness to the significance of UTI and mental health.

Subscribe to Live UTI Free on YouTube to watch more expert interviews and to be notified when new videos are released. For answers to commonly asked questions about chronic and recurrent UTI, visit our FAQ page.