Multiple sclerosis (MS) is a neurological disease affecting the central nervous system, causing various symptoms such as fatigue, numbness and tingling, pain, bladder and bowel problems, tremors, loss of balance, and more.

People with MS, particularly women, often experience lower urinary tract symptoms (LUTS) and overactive bladder (OAB), which can lead to embarrassment and social isolation. Additionally, sexual dysfunction is common in women with MS and is linked to MS symptoms as well as psychological factors.

However, these issues are often overlooked, and patients hesitate to discuss them with their healthcare providers due to stigma. A recent study aimed to explore women’s experiences of OAB and sexual dysfunction in the context of MS, providing valuable insights for patients and healthcare professionals.

The study used a qualitative approach to explore women’s experiences with MS, bladder issues, and their impact on sexuality. It involved 12 married women with MS who reported OAB symptoms.

The participants were interviewed one-on-one by a female researcher in a private setting. Interview questions focused on the participants’ perspectives on sexuality and how urinary problems affected their sex lives.

Each interview lasted between 25 to 60 minutes, and the interviewer used voice recording and notes to document the information. The researcher continued to collect data until no new insights were gained.

When the interviews were complete, they were compiled and analyzed for common themes. Four main themes and several subthemes emerged. The main themes were sexual self-concept, sexual relationships, sexual function, and coping with problems. The subthemes were body image, sexual esteem, the meaning of sexuality, communication, intimacy, coping with OAB, coping with sexual problems, and getting support.

Main Theme 1: Sexual Self-Concept

The women with MS had their sexual identities negatively impacted by OAB symptoms. Many women used diapers due to urinary incontinence, which affected their body image by making them feel less feminine and attractive. They worried about embarrassment and unpleasant odors, contributing to reduced self-esteem. Ultimately, the bladder issues and other MS symptoms made sexuality less important for most women. Nevertheless, some still saw it as a duty.

Main Theme 2: Sexual Relationships

Over half of the women reported that their sexual relationships were affected. Several women had difficulty discussing their bladder and sexual problems with their partners due to shame and fear. Still, they sought emotional and physical intimacy from their partners, with some experiencing improved intimacy. However, some were left feeling that their partners prioritized sex over intimacy.

Main Theme 3: Sexual Function

The participants experienced sexual reluctance, reduced sexual frequency, and concerns about incontinence during sex. Various issues like discomfort, pressure on the bladder, dryness, and pain were reported.

Main Theme 4: Coping with Problems

The women employed several different strategies to cope with their OAB and sexual problems. They restricted fluid intake, used cloth diapers, did Kegel exercises, and took medication. Most of the women reported concealing their sexual reluctance from their partners and took precautions like emptying their bladders before sex. Partner support was crucial for many, but few shared their problems with their husbands. Furthermore, support from health professionals was lacking, and many women felt this aspect was not addressed during medical visits.

These findings give us a broader understanding of the sexual experiences of women with MS reporting OAB, which may be helpful for individuals who are struggling with these issues. If you are experiencing similar problems, know that you are not alone. Seek help from a qualified sexual health specialist or mental health professional.

References:

• Dunya, C. P., Özkan, İ., & Demir, S. (2023). Sexuality experiences of women with multiple sclerosis reporting overactive bladder: a qualitative study. The Journal of Sexual Medicine, 20(9), 1172-1179. https://doi.org/10.1093/jsxmed/qdad100