How a heart defect may affect sexuality

(© Ulrika Hallin)

Even though the number of adults with a congenital heart defect is increasing, little research is available about how sexuality is affected by congenital heart disease. However, some research does suggest that the information available to both teenagers and adults does not always reach its target audience, irrespective of whether it concerns physical, psychosocial, or purely health-related aspects. This finding is unfortunate since sexual wellbeing is closely related to quality of life. One of the reasons why this information has not reached its target audience is because advice on this topic has not kept pace with the specific needs of this unique population of teenagers and adults and because empirical data is scarce. However, information is crucial because those with more serious heart defects are at increased risk of impaired sexuality because of their disorder, the medication that they are taking, or psychological barriers.

Sexual activity

Individuals with congenital heart disease have been reported to be as sexually active as their healthy peers. In Canada, however, it was found that fewer adolescents and young adults with congenital heart defect were sexually active compared to normative samples. It was also found that 36 per cent of these young adult patients engaged in potentially risky sexual behaviour, such as having multiple partners, questionable birth control, and using drugs or alcohol before sex. Women with complex congenital heart defect had the most concerns about fertility, heredity and risk of pregnancy. These findings firmly underline the need for specific patient education.

Young adults with congenital heart defect may be prone to experience anxiety or concern before, during or after sexual intercourse. They may experience physical symptoms such as arrhythmias, difficulty breathing (dyspnoea) and chest pains. Impotence is slightly more common in men with congenital heart disease than in the population on average. In Germany the average age for teenagers to have their first sexual experience is 17 years, although in many cases it is younger. However, in Germany those with more complicated congenital heart disease tend to have their first experience later.

Impotence

In a Canadian study it was found that more men than women with congenital heart defect were sexually active, which is consistent with a study of youth with other chronic diseases.
Males with congenital heart defect may suffer from impotence. This can be caused by the heart defect itself – arrhythmias, medication the patient is taking or vascular alteration. Smoking and alcohol can also affect erectile function.

Fears and emotional problems

In addition to purely physical problems, persons with congenital heart defect may experience anxiety or concern before or during intercourse (or other sexual activities), irrationally fearing that arousal or overexertion may lead to a sudden death. In terms of exertion, blood pressure and heart rate, however, having intercourse is comparable with climbing two flights of stairs at a brisk pace. In Belgium it was found that adult congenital heart defect patients reported fewer sexual problems than those without congenital heart defect (the control group), but congenital heart defect women experienced distress at “being insecure about having sex, not enjoying sex and not being aroused” more often than male patients. In a Dutch study it was found that especially young adult female patients were at increased risk of psychopathology. In young female patients disease specific uncertainties (around sexual relationships, birth control, pregnancy risks, delivery and offspring) may play a role. These issues may cause anxiety about their physical functioning.

Pregnancy a risk

Inability to have children due to cardiac risks can have a very negative influence on a woman’s sense of identity and self-worth. Many of the female patients in the Dutch study felt that their congenital heart defect restricted their choice of having children. Accordingly, this patient sample seemed to raise families later than the general population.

Feeling uncomfortable

Some people feel uncomfortable about showing their scars and in a Dutch study, restrictions caused by the scars formed a predictor for an elevated level of long-term psychopathology. For young female patients, surgical scars may result in feelings of uncertainty, unattractiveness and fear of rejection. In a Canadian study it was found that more than half of the patients felt permanently disfigured by the cardiac scar. In a minority chest scarring was associated with decreased self-esteem. Chest scarring, however, appeared to have a limited effect on sexual relationships.

Contraceptives

On the basis of their heart defects alone, women born with congenital heart disease have a greater-than-average need for information about appropriate contraception. Birth-control pills are most commonly used in people with congenital heart disease, followed by condoms. Birth-control pills carry a risk of blood clots and are not always the best choice in, for example, women with cyanotic heart defects (see also the chapter on pregnancy).

Menstruation

Overall, the age at which women with congenital heart defects get their first menstrual period is (slightly) increased compared to the general population. Onset of menstruation is delayed in females with “in origin” cyanotic heart disease. Many women with congenital heart defects have problems during menstruation, including menstrual pains, heavy blood loss, or missed periods. Tiredness, respiratory distress, chest pains, vertigo, and arrhythmias can also increase during menstruation.  Menstrual cycle disorders depend on the presence of cyanotic heart disease, surgical status, the number of surgical interventions, and the severity of the congenital heart defect.

Implications for clinical practice

Disease-specific patient education on sexuality and reproductive issues is very important, It may relieve uncertainties, misconceptions and unnecessary burdens or limitations on the patient’s sexual activity. In assessing the patients well-being, special attention should be given to the restrictions that young congenital heart defect females experience. In particular: feelings around scarring, sexual functioning, fertility status, birth control, pregnancy risks, heredity, raising children and life expectancy.

References

Vigl M. Reproductive health in females with congenital heart disease, AEPC psychosocial working group, Lecture at Bruges; February, 2008.

Barnhjärtmötet Paediatric Heart Conference in Östersund, Sweden, March 2008.

Vigl M. Sexuality and erectile dysfunction in patients with congenital heart disease, Competence Network for Congenital Heart Defects, Germany, 2008

Menstrual cycle and its disorders in women with congenital heart disease.
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Author(s): Ulrika Hallin
Reviewed by: Elisabeth Utens
Last updated: 2012-03-26

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Comments on this article

08.10.2011 | ADOLFO ORMA, ARGENTINA
Excelente articulo sobre la implicancia de cardiopatias en la actividad sexual de los pacientes.
27.11.2011 | LILIANA fernandez, PERU
es muy buena la informacion que se brinda sobre este tema para los q padecen de esta enfermedad al igual q yo kiza muchas personas quisieran tener una vida normal en todos los sentidos. y se de mas informacion sobre este tema q algunos no estan informados.
26.11.2012 | paola gonzalez, colombia
buena informacion soy paciente cardiopata tengo un niño de 12 años gracias a dios, nunca he tenido control de mi problema nada mas cuando estaba en embarazo muy pronto cumplire mis 40 años

cuando fui a tener mi hijo se me complico un poco ya que en el examen utimo que me hicieron arrojaba que tenia hinpertencion pulmonar pero fijecen dios es grande y aqui estoy criando a mi hijo un buen ejemplo que dios existe gracias
24.04.2013 | JOSE MARIA RODRIGUEZ, MÉXICO
Bastante bien, pero un tanto incompleto Porqué no hay nada que haga mencion sobre el sexo de adultos, me explico: tenia estenosis aortica congenita, fui operado en 4 ocasiones me implantaron protesis mecanica aortica a la fecha tengo 65 años de los 45 a los 60 mis relaciones fueron casi nulas desde hace 5 años a la fecha empece a tomar potencializadores sildenafil para ser exactos primero una vez al mes y con miedo de las reacciones a la fecha lo practico 3 veces por semana y todo normal era más el miedo hoy la satifaccion para mi y mi pareja algo unico.





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