Bladder pain, stress and the nervous system

What I've learned from 25 years of living with, and working with, interstitial cystitis

A woman walks into my London clinic holding a thick folder of medical reports. She has seen several specialists, had invasive tests and tried a number of medications. Her bladder controls her life: pain, urgency, sleepless nights. She describes feeling as if she's "living in a prison."

What stays with me is not just her symptoms but her story. Time and again, patients tell me their bladder problems began during a period of intense stress: a divorce, a bereavement, redundancy, or old memories resurfacing.

After seventeen years in practice, and many patients with interstitial cystitis (IC) and overactive bladder (OAB), this pattern has changed how I think about these conditions. I want to share what I've observed and what the research says, while being clear about what is and isn't yet known.

My own story

This work is personal. My own IC began in my teenage years. Having acupuncture during that time made such an impression on me that I went on to train as an acupuncturist, completing a further degree and a year of supervised clinical practice to gain my licence.

I know how frustrating these symptoms are, and how they can make you feel your body has let you down.

What I see in clinic

In 2020 I asked my patients to complete the Adverse Childhood Experiences (ACE) questionnaire. It measures difficult experiences in childhood: not only severe abuse, but things like parental separation, emotional neglect, or growing up with a parent who had a mental illness or addiction.

Among my patients with bladder symptoms, the average score was 4.8, and the most common score 4. For comparison, a large Welsh study found that about 1 in 7 adults reported four or more ACEs (Bellis et al., 2015). My figures come from a small, self-selected group of patients and aren't a scientific study, but they are consistent with published research:

  • 78% of people with chronic pelvic pain in one large US study reported at least one adverse childhood experience (Schrepf et al., 2018).
  • Women with IC reported higher rates of childhood trauma than women without IC (Nickel et al., 2011).
  • In one study, 42% of people with IC met the screening criteria for post-traumatic stress disorder (McKernan et al., 2019).

These studies show an association. They don't prove that stress or trauma causes IC or OAB, and many people with these conditions have no such history.

How stress and the bladder may be linked

Researchers are exploring several ways the nervous system and the bladder may be connected:

  • The stress response system. Early-life stress can change how the body's main stress system (the HPA axis) responds later in life (van Bodegom et al., 2017).
  • The "fight or flight" system. A review of case-control studies found signs of an overactive sympathetic nervous system in conditions including fibromyalgia, IBS and IC (Martínez-Martínez et al., 2014). Higher stress levels have also been linked to more severe OAB symptoms (Lai et al., 2015).
  • Pain sensitivity. In "central sensitisation", the nervous system amplifies signals, so normal bladder filling can feel painful or urgent (Grundy et al., 2018).
  • The pelvic floor. Studies have found more pelvic floor problems in women with a history of abuse (Beck et al., 2009; Cichowski et al., 2015). In clinic I often find patients holding a lot of tension in the pelvic floor.
  • The freeze response. Some clinicians use Stephen Porges' polyvagal theory to describe a "freeze" response to feeling trapped (Porges, 2007). It is a useful way of talking about stress, though the theory is still debated by scientists.

This helps explain why symptoms often flare during stressful periods, and why IC and OAB often occur alongside conditions such as IBS and fibromyalgia.

How I work

The NHS notes that no single treatment works for everyone with IC, and that you may need to try several. I see my work as one part of that picture, alongside the care you receive from your GP, urologist or pelvic health physiotherapist. Please keep working with them, and don't stop any treatment without talking to them first.

In my sessions I focus on three things:

  1. Understanding your stress response. Learning to recognise how your nervous system reacts to stress, noticing what helps you feel safe and calm, and practising simple techniques to settle yourself. This can be done in person or online.
  2. Acupuncture. In traditional Chinese medicine, health depends on the smooth flow of qi (energy) through the body's channels, and blockages in that flow are seen as part of what lies behind symptoms. I practise both Traditional Chinese Medicine (TCM) and Five Element acupuncture. Five Element is an ancient system that looks at each person's constitution through the elements of Wood, Fire, Earth, Metal and Water, treating the whole person rather than the symptom alone. I use acupuncture in these traditional ways, to clear those blockages and restore balance, working alongside the nervous system work. Many people also find the sessions deeply relaxing.
  3. Relaxing the pelvic floor. Breathing and relaxation exercises to help release tension. If you have pelvic floor symptoms, a specialist pelvic health physiotherapist can assess whether strengthening or relaxation work is right for you.

In one small pilot study, women with IC who practised guided imagery, a simple relaxation technique, reported less pain and fewer urinary symptoms than those who didn't (Carrico et al., 2008). Larger studies are needed, but it supports the idea that calming the nervous system is worth exploring.

A message for you

If you recognise yourself here, your symptoms are real. They're not "all in your head." Stress and the nervous system are one part of a complex picture, and understanding that part can be a helpful step.

If you'd like to talk about whether my approach could suit you, you're welcome to book an appointment or get in touch.

Esther Holford BSc (Hons), BA (Hons), MBAcC, Lic Ac, has practised acupuncture in London for over seventeen years. She is a member of the British Acupuncture Council, whose register is accredited by the Professional Standards Authority, and is fully insured through that membership.

This article describes my own clinical observations and published research. It is not medical advice. Please speak to your GP or specialist before making decisions about your treatment.

References

Beck, J.J.H., Elzevier, H.W., Pelger, R.C.M. and Putter, H. (2009) 'Multiple pelvic floor complaints are correlated with sexual abuse history', The Journal of Sexual Medicine, 6(11), pp. 3176–3184.

Bellis, M.A., Ashton, K., Hughes, K., Ford, K., Bishop, J. and Paranjothy, S. (2015) Adverse Childhood Experiences and their impact on health-harming behaviours in the Welsh adult population. Cardiff: Public Health Wales.

Carrico, D.J., Peters, K.M. and Diokno, A.C. (2008) 'Guided imagery for women with interstitial cystitis: results of a prospective, randomized controlled pilot study', Journal of Alternative and Complementary Medicine, 14(1), pp. 53–60.

Cichowski, S.B., Dunivan, G.C., Komesu, Y.M. and Rogers, R.G. (2015) 'Sexual abuse history and pelvic floor disorders in women', Obstetrics & Gynecology, 125(2), pp. 399–406.

Grundy, L., Caldwell, A. and Brierley, S.M. (2018) 'Mechanisms underlying overactive bladder and interstitial cystitis/painful bladder syndrome', Frontiers in Neuroscience, 12, p. 931.

Lai, H., Gardner, V., Vetter, J. and Andriole, G.L. (2015) 'Correlation between psychological stress levels and the severity of overactive bladder symptoms', BMC Urology, 15(1), p. 14.

Martínez-Martínez, L.A., Mora, T., Vargas, A., Fuentes-Iniestra, M. and Martínez-Lavín, M. (2014) 'Sympathetic nervous system dysfunction in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis: a review of case-control studies', Journal of Clinical Rheumatology, 20(3), pp. 146–150.

McKernan, L.C., Johnson, B.N., Reynolds, W.S., Williams, D.A., Cheavens, J.S., Dmochowski, R.R. and Crofford, L.J. (2019) 'Posttraumatic stress disorder in interstitial cystitis/bladder pain syndrome: relationship to patient phenotype and clinical practice implications', Neurourology and Urodynamics, 38(1), pp. 353–362.

Nickel, J.C. et al. (2011) 'Childhood sexual trauma in women with interstitial cystitis/bladder pain syndrome: a case-control study', Canadian Urological Association Journal, 5(6), pp. 410–415.

Porges, S.W. (2007) 'The polyvagal perspective', Biological Psychology, 74(2), pp. 116–143.

Schrepf, A. et al. (2018) 'Adverse childhood experiences and symptoms of urologic chronic pelvic pain syndrome', Annals of Behavioral Medicine, 52(10), pp. 865–877.

van Bodegom, M., Homberg, J.R. and Henckens, M.J.A.G. (2017) 'Modulation of the hypothalamic-pituitary-adrenal axis by early life stress exposure', Frontiers in Cellular Neuroscience, 11, p. 87.