Chronic UTI and Mental Health

Chronic UTI and Mental Health

Reading Time: 9 minutes

People experiencing chronic pain and illness, like chronic urinary tract infection (UTI), often find their condition has as equally devastating an impact on their mental health as it does on their physical health and well-being. In a society which overwhelmingly focuses on health and ‘good’ health behaviour—you go to the doctor, follow their instructions, and get better—the impacts of having a chronic health condition are often completely unexpected, and rarely discussed.

It is not unusual for the resources and strategies people previously used to cope with everyday life stressors to rapidly become overwhelmed, leaving people feeling lost, helpless, and hopeless. We tend not to talk about how experiencing a significant health condition increases people’s vulnerability. Unfortunately, additional features associated with chronic pain and illness are loss and grief. When someone is chronically ill, they can be at risk of loss of employment, important relationships, and secure housing. They may also experience less tangible losses, such as a loss of identity, and of their hope and dreams for the future. In the struggle to ‘get better’, many patients are inadvertently traumatised, either through the struggle for an accurate diagnosis, through invasive and painful treatments, or through the implication that they may somehow be responsible for causing their condition. Is it any wonder then, that anxiety and depression are increasingly experienced by people with chronic UTI? We feel it is just as important for people to know about the mental health impacts of chronic pain and illness as it is to know about the physical impacts, and to be able to recognise when their physical ill-health is impacting their mental well-being so they can seek appropriate help.  The following article has been written by people who understand chronic UTI and the impact it can have on your mental health.  We hope you find it helpful.

Please Note: Although we hope this is not the case, if reading this article induces negative thoughts relating to your health condition, we encourage you to seek support from family, friends, a trusted health professional or other familiar supports. If you are in crisis, please contact Lifeline on 13 11 14Beyond Blue on 1300 22 4636, the national Suicide Callback Service on tel:1300659467 or the relevant mental health support organisation in your country.

Chronic UTI and Caring for your Mental Health

How do you find the energy? The next step towards wellness, towards a cure; an answer to your suffering. A solution to give you even just a few hours of relief from the pain, let alone a lifelong cure. Even the thought of facing another doctor who does not believe your pain is real, to hear again that there is no sign of anything being wrong, no bacteria in your urine culture. Not only is your body in pain but your mind is suffering too, going through these motions again, and again. So, what can you do for your mental health when all you feel is exhausted? So utterly overwhelmed and helpless. How do you support your mental health when you’re using all your energy to merely get through each day? Whilst a lot of things feel like they’re out of your control, there are things you can do to feel better such as sleep routine, exercise, seeing a mental health professional and practising mindfulness exercises.

There is ample basic science evidence to support an association between disrupted circadian rhythms and depressive-like behaviour. (Walker, 2020). Initiating and maintaining regular sleep is important in maintaining a healthy circadian rhythm. Setting boundaries for yourself to maintain healthy sleep hygiene allows us to control one element of our well-being. This might look like a wind-down routine of a night; not looking at your phone screen 30 minutes before bed; sleep meditations and breathing exercises work beautifully too. A part of healthy sleep hygiene is also waking up at a similar time each day too, having an alarm set at a decent hour in the morning to prevent oversleeping. Starting your morning with routine sets a strong foundation for the rest of your day. How much could your body thrive if you slept more regularly?

Another way of fortifying your mental health against chronic pain is exercise, even a simple walk. Pay attention to the different trees that you walk past. What shape are the leaves? What do they feel like? Be curious. Be inquisitive. Do they smell pleasant or offensive? Live in the moment. How does the grass feel under your feet? Being in nature gives us a dopamine rush and grounds us to the earth.

Using a mindfulness app is an easy way to achieve a moment of peacefulness at the click of a button. Insight Timer is one of my favourites and has such a vast array of guided meditations, relaxation music, live videos of people using singing bowls or giving a lecture on breathwork, yoga exercises and body scan meditations. Sometimes, you might only have the energy to scroll through Facebook or Instagram. What if you were to click on Insight Timer and just start a 5-minute guided meditation? I often ask clients to journal how they feel before beginning and then notice how they feel after the meditation? Have they felt a significant drop in pain? Do they feel like they’ve had a rest from their racing mind? Do they feel any different at all? Is it something they might like to do again? Mindfulness can be quite overwhelming, but you can simplify it. It is not helpful to compare yourself to the Monks in Cambodia! The goal is to take a moment out of your busy day, find a level of peace, let your body’s cells repair and heal. What if you felt better after 3 minutes, 3 x a week?

Feeling overwhelmed with the weight of a label a doctor has given you or with what feels like never ending pain coursing through your body? It’s very normal to feel overwhelmed, like it’s all too much, distressed, hopelessness, despair, sadness, grief, loneliness, isolation. The cognitive impact of feeling perpetually overwhelmed can range from mental slowness, forgetfulness, confusion, difficulty concentrating or thinking logically, to a racing mind or an impaired ability to problem solve (Zucker, 2019).  Not everybody deals with pain the same. Not everybody feels pain the same. Don’t compare yourself to the person next to you. Internal pain—silent dis-ease is hard for some people to understand. Surround yourself with friends who understand when you say no to going out to dinner. Find your people, people who respect your boundaries and get the fact that even though they don’t see or feel your pain, they empathise with you. Overwhelm is such a common feeling for people who suffer with chronic pain. The good news is, there is help. We can’t control everything that happens, but we can change our experience of those things (Headspace, 2018). There are things you can do to alleviate some pain—physically but also mentally. Seeing a counsellor might help. Having someone who empathises and listens without interruption or judgment. You are never alone.

Contributed by Melinda Brown, Counsellor and Member of ACA.  Specialising in anxiety, women’s health and chronic pain. Online, telephone or in person therapy available. Gold Coast, Australia


Monika’s Story

“I have suffered chronic/recurrent UTI for over 25 years. Unfortunately the condition has increased in its severity and impacts on my life throughout that time. The impacts of this condition have been significant: physical and mental health, relationships, work time lost, keeping physically fit and participating in a range of recreational activities, ongoing issues with managing energy levels, and many issues associated with spending large amounts of money and time on medical investigations, medical procedures and interactions with the medical system.

“Joining the international and Australian forums has helped me enormously. Through those forums I have discovered that I’m not the only person in the world who suffers this condition. Honestly, I thought I was. Depression and anxiety seem to be raised frequently in the forums as accompanying conditions. My own experience has been depression from lack of energy, feeling hopeless that I’ll ‘never’ get better, feeling sad that I can’t participate in the activities that I’d like to do, and feeling disempowered by the lack of support from Australian medical practitioners. Anxiety related to sex is a frequently raised issue by women: that the pain and suffering likely to result will far outweigh the benefits of physical intimacy. Anxiety that our inability to have a ‘normal’ sexual relationship will result in the loss of our relationships. Anxiety that flares seem to be completely random. Worrying about flaring while we’re trying to enjoy a holiday, worrying that a flare will result from something that ‘normal’ people seem to enjoy, like swimming pools, spa baths, drinking alcohol or having a late night.

“One of the most important things I have learned as a sufferer of this condition is that I need to advocate for my own health. The mental health aspects of this condition are as debilitating as the physical pain and suffering. My recommendation to any other sufferers who are experiencing mental health issues is to seek treatment. In the way that physical conditions are often treated with medications, mental health conditions can be treated with a range of options, from counselling, psychological approaches like cognitive behavioural therapy, specialist practitioners who can work on sexuality and identity issues, medications, and self-care practices like rest and meditation. It may also be worth noting that physical health can be an underlying issue in mental health. It is worth exploring the relationship of vitamin deficiencies with symptoms like fatigue and low moods. Some of the suggestions from the forums that I have found useful include spending time in nature, spending time with supportive loved ones, watching comedy videos and finding funny internet content. The key is looking after yourself in whatever ways work for you. Taking your mental health seriously is one of the challenges of this condition and there are a load of options to explore.”


Counselling Options

Deciding to see someone for counselling is a positive step—but what happens next? For people who have never had counselling before, this decision is often accompanied by questions like: Who should I see? Do I need a referral?  How much will it cost? Can they give me medication? Given that information is the key to making an informed decision, it can be helpful to understand your counselling options and how to access an appointment.

In brief, counselling can be provided by people with a range of training and qualifications. People who provide counselling typically have a background in social welfare, relationship or family therapy, social work, psychology, occupational therapy, nursing, psychiatry, etc. Some people who provide counselling will be members of their respective registration boards and professional bodies; some will be registered with private health insurance funds; and some will be registered with Medicare.

Counselling through the public system is generally provided by local community health centres or not-for-profit organisations. You can usually refer yourself to these places by calling the service. The receptionist or an intake worker will ask questions to assess your suitability for the service. They will either make an appointment for you to see someone or put you on their waiting list. With a public service, you do not choose who you see and there may be a significant waiting period. In terms of cost, you may pay no fee, a subsidised fee, or a fee based on your income.

Counselling through the private system is generally provided by independent therapists, a group practice or larger companies. You can refer yourself by calling the service or you can ask your doctor to write a referral to someone they suggest, or to someone you would like to see. With private services, the fee is set by the service—therefore, it will vary depending on the provider’s training, qualifications, experience and the recommended fee suggested by their professional body. With private services you will be required to pay the provider directly and you may be able to claim a Medicare* or private health insurance rebate on the spot. However, if you see a provider who bulk bills, you do not pay the provider.  Medicare will pay them on your behalf, as long as you have a current referral from your doctor.

As another option, there are also psychiatrists who provide counselling. Psychiatrists are medically trained doctors who have specialised in psychiatry (mental health) and can prescribe medications for psychiatric conditions and disorders. To see a psychiatrist, it is necessary to get a referral from a doctor. Being a private provider, you can choose who you would like to see, or you can see who your doctor recommends. You also have to pay the psychiatrist directly (unless they bulk bill), however you will be eligible for a Medicare rebate which can help off-set the cost.

On a final note, regardless of which counselling option you decide to pursue, the most important factor is the ‘fit’ or relationship between yourself and the counsellor. Sometimes it will feel right from the first impression, sometimes it takes time to build, and other times it might require finding an alternative—and that’s perfectly ok!

*It is important to note, that usually only 10 sessions per calendar year can be claimed through Medicare under the mental health treatment plan. However, due to the pandemic, this has been increased to 20 sessions per calendar year, until 30th June 2022.

Contributed by Anita Hermans, Registered Psychologist, Assoc. MAPS BAppSc(Psych), GDipPsych, GDipAdolHlthWelf. Victoria, Australia.


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Disclaimer:  Stories or case studies in relation to personal experiences with chronic urinary tract infection, and links to other websites, are included for convenience and information only and do not constitute a recommendation or endorsement by Chronic UTI Australia of materials in those stories or on those linked websites, or any associated entity, product or service. We have not screened, nor conducted background checks or other investigations in relation to those third parties or the information they supply for inclusion on this website.  You should seek assistance from a health care professional when interpreting the materials available on this website and applying them to your individual circumstances. If you have any concerns about your health, consult your general practitioner. This blog is subject to the Chronic UTI Australia website’s Terms of Use.


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