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MS research update – Sex and MS: relationship with depression, fatigue and disability – 9 August 2017

Summary

People with MS from across the UK taking part in the TONiC study completed a pack of questionnaires on sexual functioning, fatigue, anxiety and depression and day-to-day life. 431 people answered questions on sexual functioning.

Of those who were sexually active, only 12.5% reported no impact on any aspect of sexual function.

These results show that the effect of MS on sexual functioning is significant. The psychological aspects of MS affecting sexuality - such as feeling less attractive or concerns about sexually satisfying a partner - were found to have a considerable impact, contributing significantly to the other areas of sexual problems. Depression, rather than affecting sexual functioning, was found to be affected by the psychological aspects, with worries about sexual functioning increasing depressive symptoms.

The psychological aspect of sexual problems, an area which is frequently neglected during discussions with health professionals, is clearly important to take into account. The researchers highlight the need to address people's worries about sexuality, offering the potential to reduce depression.


Background

Sexual activity is an important part of life for many people and contributes to their quality of life, the quality of their relationships and to self-esteem and self-image. Sexual problems in both men and women are common in MS but is not clear how these affect, or are affected by, other symptoms of MS, such as depression, fatigue and level of disability. This research investigated the connections between these different aspects of MS and how they are influenced by age, gender and type of MS.

How this study was carried out

People with MS from across the UK taking part in the TONiC study completed a pack of questionnaires on sexual functioning, fatigue, anxiety and depression and day-to-day life. At the time of the analysis, a total of 722 participants had returned questionnaires. Of these, 538 were sexually active and 431 (80%) answered questions on sexual functioning.

What was found

Of those who were sexually active, only 12.5% reported no impact on any aspect of sexual function.

Sexual problems were classified into three categories:

  • Primary - MS directly affects sexual response, such as problems with orgasm, numbness in genital area, erections or vaginal lubrication
  • Secondary - MS symptoms indirectly affect the sexual response, such as bladder or bowel, pain or spasticity problems which make sexual activity more difficult
  • Tertiary - psychological and social aspects of MS that affect sexuality, such as being afraid of being rejected because of MS, feeling less attractive or concerns about sexually satisfying a partner. These aspects were grouped together as "worries" by the researchers.

Only 16.5% reported no primary aspects, meaning the great majority (83.5%) experience some MS-related symptoms that directly affect their sexual functioning. In addition, only 22.5% reported no secondary aspects and another 22.5% reported no tertiary aspects. Almost two-thirds (63.8%) indicated that they were affected by all three areas.

Unsurprisingly, there was a strong connection between level of disability and all three categories of sexual problems. There were some differences in the sexual problems experienced by people with different types of MS; people with secondary progressive MS had more primary sexual problems, those with relapsing remitting MS had least problems across all three categories. Men had significantly more "worries" than women, although the type of worries varied by gender with women being more likely to worry about feeling less attractive due to their MS and men being more likely to worry about sexually satisfying their partner.

Depression, rather than directly affecting sexual functioning, was found to be affected by the tertiary aspects, with worries about sexual functioning increasing depressive symptoms.

What does it mean?

These results show that the effect of MS on sexual functioning is significant. The tertiary aspects (“worries”) were found to have a considerable impact, largely contributing to the other areas of sexual problems.

The psychological aspect of sexual problems, an area which is frequently neglected during discussions with health professionals, is clearly important to take into account. The researchers highlight the need to address people's worries about sexuality, offering the potential to reduce depression.

Young CA, et al
Sexual functioning in multiple sclerosis: relationships with depression, fatigue and physical function
Multiple Sclerosis Journal 2017; 23: 1268-1275
Abstract

More about MS and sex

Both men and women with MS may have sexual issues but many people are reluctant to discuss them due to embarrassment and shyness.

Sometimes problems are minor and can be managed easily with general advice, at other times they can be more significant and require specialist input.

Sexual difficulties can be experienced at any time during the course of MS. They may be the result of other MS symptoms including bladder symptoms, pain, fatigue or spasticity. They can also be a side effect of medication so it can be worth having this reviewed.

Living with MS can have a significant effect on someone's self-esteem and self-image and this can affect their sexuality.

However, not every sexual problem is due to MS and many of the difficulties described by people with MS also occur in the general population, for example, anxiety or other medical conditions.

The MS Trust has two resources for people with MS and their partners. They can be read online, downloaded or ordered free of charge.

Sexuality and MS: a guide for women explains how MS can impact on both sexuality and intimacy and offers positive and practical solutions. It is illustrated with comments, opinions, experiences and tips from women with MS.

Sex and MS: a guide for men looks at how MS can affect the sex lives of men and how these issues can be managed.

More about TONiC

The Trajectories of Outcome in Neurological Conditions (TONiC) study is one of the largest ever quality of life studies for people with neurological conditions in the UK. It will identify factors that affect quality of life in MS and investigate how these factors interact. The results from TONiC will be used to tailor services, to focus therapies and to identify aspects of MS that are important to people, but might be underestimated by current service provision.

TONiC is still recruiting new participants. Anyone with MS, regardless of type or stage of MS, is welcome to take part in the study. You will be asked to complete a set of questionnaires initially and then repeat this again later to give an idea of how things have changed for you. You can find out more by contacting one of the recruiting centres  or by contacting the TONiC team directly.

Research by topic areas...

Causes of MS

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Breastfeeding, ovulatory years, and risk of multiple sclerosis.
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Co-existing conditions

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Newman JM, Naziri Q, Chughtai M, et al.
Does Multiple Sclerosis Affect the Inpatient Perioperative Outcomes After Total Hip Arthroplasty?
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Disease modifying drugs

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Fox RJ, Gold R, Phillips JT, et al.
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Annovazzi P, Bertolotto A, Brescia Morra V, et al.
A Comprehensive Review on Copemyl(®).
Neurol Ther. 2017 Jul 31. [Epub ahead of print]
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Fernández Ó, Giovannoni G, Fox RJ, et al.
Efficacy and Safety of Delayed-release Dimethyl Fumarate for Relapsing-Remitting Multiple Sclerosis in Prior Interferon Users: An Integrated Analysis of DEFINE and CONFIRM.
Clin Ther. 2017 Jul 24. pii: S0149-2918(17)30765-8. [Epub ahead of print]
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Ghadiri M, Fitz-Gerald L, Rezk A, et al.
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Mult Scler. 2017 Aug;23(9):1225-1232.
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Baldassari LE, Rose JW.
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Neurotherapeutics. 2017 Jul 13. [Epub ahead of print]
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Gelfand JM, Cree BAC, Hauser SL.
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Neurotherapeutics. 2017 Jul 10. [Epub ahead of print]
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Foley JF, Nair KV, Vollmer T, et al.
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Patient Prefer Adherence. 2017 Jun 16;11:1035-1048.
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Prosperini L, de Rossi N, Scarpazza C, et al.
Natalizumab-Related Progressive Multifocal Leukoencephalopathy in Multiple Sclerosis: Findings from an Italian Independent Registry.
PLoS One. 2016 Dec 20;11(12):e0168376.
abstract
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Hernandez L, Guo S, Toro-Diaz H, et al.
Peginterferon beta-1a versus other self-injectable disease-modifying therapies in the treatment of relapsing-remitting multiple sclerosis in Scotland: a cost-effectiveness analysis.
J Med Econ. 2017 Mar;20(3):228-238.
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Hoepner R, Kolb EM, Dahlhaus S, et al.
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Mult Scler. 2017 May;23(6):830-835.
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Other treatments

Vermöhlen V, Schiller P, Schickendantz S, et al.
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Claflin SB, van der Mei IAF, Taylor BV.
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J Neurol Neurosurg Psychiatry. 2017 Aug 2. pii: jnnp-2016-314490. [Epub ahead of print]
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Read the full text of this paper

Kindred JH, Li K, Ketelhut NB, et al.
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Complement Ther Med. 2017 Aug;33:99-104.
abstract

Paediatric MS

Pakpoor J, Goldacre R, Schmierer K, et al.
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Mult Scler. 2017 Jul 1:1352458517719150. [Epub ahead of print]
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Ruano L, Branco M, Portaccio E, et al.
Patients with paediatric-onset multiple sclerosis are at higher risk of cognitive impairment in adulthood: An Italian collaborative study.
Mult Scler. 2017 Jun 1:1352458517717341. [Epub ahead of print]
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Belman AL, Krupp LB, Olsen CS, et al.
Characteristics of Children and Adolescents With Multiple Sclerosis.
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Chou IJ, Wang HS, Whitehouse WP, et al.
Paediatric Multiple Sclerosis: Update on Diagnostic Criteria, Imaging, Histopathology and Treatment Choices.
Curr Neurol Neurosci Rep. 2016 Jul;16(7):68.
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Pregnancy and childbirth

Amato MP, Bertolotto A, Brunelli R, et al.
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Neurol Sci. 2017 Aug 2. [Epub ahead of print]
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Boz C, Terzi M, Zengin Karahan S, et al.
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Mult Scler. 2017 Jun 1:1352458517717806. [Epub ahead of print]
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Prognosis

Lotti CBC, Oliveira ASB, Bichuetti DB, et al.
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Arq Neuropsiquiatr. 2017 Jul;75(7):451-456.
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Read the full text of this paper

Koch-Henriksen N, Laursen B, Stenager E, et al.
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J Neurol Neurosurg Psychiatry. 2017 Aug;88(8):626-631.
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Aurenção JC, Vasconcelos CC, Thuler LC, et al.
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Arq Neuropsiquiatr. 2016 Oct;74(10):836-841.
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Pitteri M, Romualdi C, Magliozzi R, et al.
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Mult Scler. 2017 May;23(6):848-854.
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Provision of care

Palliative care in progressive multiple sclerosis.
Expert Rev Neurother. 2017 Feb;17(2):123-127.
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Psychological aspects

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Rehabilitation

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Kjølhede T, Siemonsen S, Wenzel D, et al.
Can resistance training impact MRI outcomes in relapsing-remitting multiple sclerosis?
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Grasso MG, Broccoli M, Casillo P, et al.
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Eur Neurol. 2017;78(1-2):111-117.
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Kargarfard M, Shariat A, Ingle L, et al.
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Gonzales B, Chopard G, Charry B, et al.
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Eur Neurol. 2017;78(1-2):71-77.
abstract

Zaenker P, Favret F, Lonsdorfer E, et al.
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Eur J Phys Rehabil Med. 2017 Jul 5. [Epub ahead of print]
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Crank H, Carter A, Humphreys L, et al.
Qualitative Investigation of Exercise Perceptions and Experiences in People With Multiple Sclerosis Before, During, and After Participation in a Personally Tailored Exercise Program.
Arch Phys Med Rehabil. 2017 Jun 22. pii: S0003-9993(17)30414-8. [Epub ahead of print]
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Kalron A.
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Am J Phys Med Rehabil. 2017 Mar;96(3):140-145.
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Khan F, Amatya B.
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Arch Phys Med Rehabil. 2017 Feb;98(2):353-367.
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Backus D.
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Relapses

Stoppe M, Busch M, Krizek L, et al.
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BMC Neurol. 2017 Aug 7;17(1):151.
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Read the full text of this paper

Stem cells

Bell SM, Sharrack B, Snowden JA.
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Expert Opin Biol Ther. 2017 Jan;17(1):77-86. Epub 2016 Oct 14. Review.
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Read the full text of this paper

Symptoms and symptom management

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Rouleau I, Dagenais E, Tremblay A, et al.
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Clin Neuropsychol. 2017 Aug 4:1-15. [Epub ahead of print]
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Latino P, Castelli L, Prosperini L, et al.
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Neurol Sci. 2017 Aug 1. [Epub ahead of print]
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Cancelli A, Cottone C, Giordani A, et al.
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Sevim S, Kaleağası H, Taşdelen B.
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Mult Scler Relat Disord. 2017 Aug;16:40-43.
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Kratz AL, Murphy SL, Braley TJ.
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Kratz AL, Murphy SL, Braley TJ.
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Raju SS, Niranjan A, Monaco EA 3rd, et al.
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J Neurosurg. 2017 Jun 30:1-8. [Epub ahead of print]
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Jordy SS, Starzewski A Junior, Macedo FA, et al.
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Pimentel ML.
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Arq Neuropsiquiatr. 2016 Sep;74(9):693-694.
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Emmanuel A, Kumar G, Christensen P, et al.
Long-Term Cost-Effectiveness of Transanal Irrigation in Patients with Neurogenic Bowel Dysfunction.
PLoS One. 2016 Aug 24;11(8):e0159394.
abstract
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