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. 2025 Feb 27;9(2):102712.
doi: 10.1016/j.rpth.2025.102712. eCollection 2025 Feb.

Sexuality and bleeding in von Willebrand disease

Calvin B van Kwawegen  1 , Hester Pastoor  2 , Jeroen Eikenboom  3 , Karin Fijnvandraat  4 , Paula Ypma  5 , Floor C J I Heubel-Moenen  6 , Karin P M van Galen  7 , Evelien P Mauser-Bunschoten  7 , Karina Meijer  8 , Saskia E M Schols  9 , Marjon H Cnossen  10 , Johanna G van der Bom  11 , Joke de Meris  12 , Ferdows Atiq  1 , Marieke J H A Kruip  1 , Frank W G Leebeek  1 ; WiN Study Group
Collaborators, Affiliations

Sexuality and bleeding in von Willebrand disease

Calvin B van Kwawegen et al. Res Pract Thromb Haemost. .

Abstract

Background: Sexuality is a fundamental aspect of quality of life, often impacted by chronic or inherited diseases like von Willebrand disease (VWD), an inherited bleeding disorder characterized by mucosal bleeding, including heavy menstrual bleeding (HMB). To date, no studies have investigated the impact of VWD on sexuality.

Objectives: This study aimed to identify sexual restrictions and symptoms in VWD patients, differentiating between men and women and between premenopausal and nonmenstruating women.

Methods: We performed a nationwide, multicenter, prospective cohort study, the Willebrand in the Netherlands-Prospective study, including adult VWD patients (>18 years) who completed questionnaires on sexuality and health-related quality of life (SF-36). Additional data were collected via blood tests and a self-reported bleeding assessment tool (International Society on Thrombosis and Haemostasis Bleeding Assessment Tool).

Results: We included 549 VWD patients with a median age of 51 years (IQR, 37-66 years), of whom the majority were women (n = 347; 63.2%). Patients were diagnosed with type 1 (57.2%), type 2 (39.2%), or type 3 VWD (3.6%). Sexual restrictions due to VWD were reported by 3.5% of men (n = 7) and 9.8% of women (n = 34; P < .01). Bleeding during sexual activity was reported by 33.1% (n = 115) of women. Premenopausal patients more often reported sexual restrictions than nonmenstruating patients (15.5% vs 5.2%, P = .01), with HMB as the most important determinant (odds ratio, 1.60; 95% CI, 1.12-2.46). Most patients (n = 455; 82.9%) reported that sexuality was not discussed during routine clinic visits.

Conclusion: Women with VWD experience more sexual restrictions than men and report more postcoital bleeding than the general population. Premenopausal women are particularly affected, mostly due to HMB. This highlights the need for health care providers to address sexual health during consultations and treat HMB to improve overall care for VWD patients.

Keywords: hemorrhage; menorrhagia; quality of life; sexuality; von Willebrand disease.

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Figures

Figure 1
Figure 1
Flowchart of study participants. A flowchart was computed to clarify the percentages provided in the results section. Patients were included in the study if they answered the questionnaire section on sexuality. They were then stratified into groups of men and women. The group of women was divided into premenopausal and nonmenstruating patients at study inclusion. Patients were excluded from analyses on menstrual bleeding if they did not answer questions on menstruation.
Figure 2
Figure 2
Comparisons of reported sexual restriction and quality of life. A comparison was made between men and women and between menstruating and nonmenstruating patients. (A) Shows the differences between the physical domain scores of the short form (SF)-36 questionnaire. The dotted line shows the mean physical component summary score (49.7) referenced to the general population (Pop.) in the Netherlands. (B) Shows the differences between the mental domain scores of the SF-36 questionnaire. The dotted line shows the mean score (52.1) referenced to the general Pop. in the Netherlands. (C) Shows the differences between the percentage of patients who reported sexual restrictions.
Figure 3
Figure 3
Self-reported reasons for sexual restriction due to von Willebrand disease. The distribution of reasons is shown for men and women who reported to have experienced sexual restriction as a result of von Willebrand disease.
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