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MS research update - How do bladder symptoms affect life for people with MS? - 30 March 2015

Summary

Bladder problems are among the most common symptoms reported by people with MS, but many are too embarrassed to seek help. This study aimed to find out more about how bladder problems interfere with quality of life for people with MS to better understand what could be done to help.

19 people with MS in Ireland took part in the study. Each participant took part in an individual interview where they discussed their experience of living with bladder problems and how it impacted on their daily life.

The participants felt that bladder problems had disrupted their lives, interfering with their usual routine and activities such as sleep, travel and sexual relationships. Some also reported they had lost things that had been important to them such as control, security and enjoyment of events

Many of the participants believed that bladder symptoms were an unavoidable result of MS and nothing could be done by health professionals to help them, they just had to live with it. All of the participants through their experience had learned which specific actions made their bladder problems worse. 16 of the participants described how they had been managing their bladder symptoms themselves, after learning about what they could do through 'trial and error'.

The authors conclude that more needs to be done to raise awareness of the general and specialist help that is available to help people with MS manage any continence problems. They also highlight a need for more information about self-management of bladder symptoms to be made available to people that are too embarrassed to ask for or accept help.

Background

Bladder problems are among the most common symptoms reported by people with MS. It is estimated that only a third of people with MS experiencing bladder problems will seek help as many are too embarrassed and feel awkward raising the issue with health professionals. This study aimed to find out more about how bladder problems interfere with quality of life for people with MS to better understand what could be done to help.

How this study was carried out

19 people with MS in Ireland took part in the study. The group consisted of 11 females and eight males, nine had relapsing remitting MS, seven secondary progressive MS and two primary progressive MS. All had at least one bladder symptom such as involuntary leakage of urine, difficulty in emptying the bladder or needing the toilet more than eight times a day.

Each participant took part in an interview that lasted between 40 and 90 minutes that focused on bladder problems. All participants were interviewed individually, the person guiding the interview prompted participants to discuss their experience of living with bladder problems and how it impacted on their daily life. Participants were given the opportunity to also introduce relevant topics during the discussion.

The answers given during the interviews were examined and general themes and opinions were identified.

What was found

The participants felt that bladder problems had disrupted their lives, interfering with their usual routine and activities such as sleep, travel and sexual relationships. Some also reported they had lost things that had been important to them such as control, security and enjoyment of events. Despite their best efforts to plan ahead and around activities, participants felt frustrated by this loss.

Bladder symptoms were found to increase fatigue through loss of sleep and also increased anxiety which, for some participants, made both their bladder and other symptoms worse.

Many of the participants perceived that there was no cure for their bladder problems, nothing could be done about them or that there was no specific help available from health professionals. Some had never been asked by health professionals if they were having bladder trouble and some had been asked, but had been too embarrassed to admit they were having trouble and talk about it.

All of the participants knew which specific actions made their bladder problems worse, some were emotional such as stress and others were physical such as drinking alcohol or doing a specific movement. 16 of the participants described how they had been managing their bladder symptoms themselves, after learning about their body and the symptoms through 'trial and error'.

What does it mean?

The study shows that bladder problems can cause major disruptions in daily life. Many of the participants believed that bladder symptoms were an unavoidable result of MS and nothing could be done by health professionals to help them, they just had to live with it. As a consequence many had been self-managing their own symptoms through trial and error. The authors conclude that more needs to be done to raise awareness of the general and specialist help that is available to help people with MS manage any continence problems. They also highlight a need for more information about self-management of bladder symptoms to be made easily available to people too embarrassed to ask for or accept help.

Browne C, Salmon N, Kehoe M.
Bladder dysfunction and quality of life for people with multiple sclerosis..
Disabil Rehabil. 2015 Mar 24:1-9. [Epub ahead of print]
abstract

More about getting help with bladder symptoms

Bladder symptoms are common in MS. Damage to areas of the spinal cord or brain that control the bladder can cause different types of problem:

  • urgency - a desperate urge to go to the toilet with little or no warning
  • frequency - needing the toilet more than eight times a day
  • hesitancy - difficulty in emptying the bladder
  • retention - a feeling of incomplete bladder emptying

You can read more about bladder symptoms in the A to Z of MS. You can also order our book on managing your bladder. It provides a very practical approach to managing bladder symptoms and includes comments and tips from people with MS who know what it is like to live with bladder problems.

If you are experiencing bladder symptoms, you can speak to your MS nurse or GP who may refer you to continence services. These nurses specialise in helping people with bladder and bowel symptoms.

Although bladder or bowel symptoms can be hard to talk about, it is worth seeking support from health professionals and exploring what treatment options are available.

Research by topic areas...

Assessment tools

Roberg BL, Somogie M, Thelen JM, et al.
Articulation time does not affect speeded cognitive performance in multiple sclerosis.
Cogn Behav Neurol. 2015 Mar;28(1):33-38.
abstract

Morrow SA, Rosehart H, Johnson AM.
Diagnosis and quantification of cognitive fatigue in multiple sclerosis.
Cogn Behav Neurol. 2015 Mar;28(1):27-32.
abstract

Mokkink LB, Knol DL, van der Linden FH, et al.
The arm function in multiple sclerosis questionnaire (AMSQ): development and validation of a new tool using IRT methods.
Disabil Rehabil. 2015 Mar 24:1-7. [Epub ahead of print]
abstract

Causes of MS

Mouhieddine TH, Darwish H, Fawaz L, et al.
Risk factors for multiple sclerosis and associations with anti-EBV antibody titers.
Clin Immunol. 2015 Mar 21. [Epub ahead of print]
abstract

McKay KA, Kwan V, Duggan T, et al.
Risk factors associated with the onset of relapsing-remitting and primary progressive multiple sclerosis: a systematic review.
Biomed Res Int. 2015;2015:817238. Epub 2015 Jan 31. Review.
abstract
Read the full text of this paper

Co-existing conditions

Penesova A, Vlcek M, Imrich R, et al.
Hyperinsulinemia in newly diagnosed patients with multiple sclerosis.
Metab Brain Dis. 2015 Mar 27. [Epub ahead of print]
abstract

Disease modifying treatments

Rinaldi F, Perini P, Atzori M, et al.
Disease-modifying drugs reduce cortical lesion accumulation and atrophy progression in relapsing-remitting multiple sclerosis: results from a 48-month extension study.
Mult Scler Int. 2015;2015:369348.
abstract
Read the full text of this paper

Prognosis

Bergamaschi R, Montomoli C, Mallucci G, et al.
BREMSO: a simple score to predict early the natural course of multiple sclerosis.
Eur J Neurol. 2015 Mar 25. [Epub ahead of print]
abstract

Psychological aspects

Lima AB, Paes RA, Alvarenga RM.
Personality factors in recently diagnosed multiple sclerosis patients: a preliminary investigation with the NEO-FFI scale.
Arq Neuropsiquiatr. 2015 Mar;73(3):200-4.
abstract
Read the full text of this paper

Ghasemi M, Gorji Y, Ashtar F, et al.
A study of psychological well-being in people with multiple sclerosis and their primary caregivers.
Adv Biomed Res. 2015;4:49.
abstract
Read the full text of this paper

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