Keywords

1 Introduction

From puberty to old age, sexual functioning is an essential aspect of quality of life (QoL) for almost all women and men. Sexual functioning and the human sexual response are determined by an intricate interplay between biological, psychological, social, and relational factors.

All medical, psychological, social, and relational events throughout the lifespan may impact sexual functioning, sexual well-being, and reproductive health. However, the way women and their partners can adjust their sex lives to critical life events determines whether or not they will be able to enjoy pleasurable sexual encounters irrespective of the difficulties they have to face.

Disease and medical interventions can have profound effects on all aspects of sexuality, and that is certainly the case when procreation, pregnancy, childbirth, and the genitals are involved.

People living with a chronic disease have to cope with the impact of the disease and its treatment on their sexual lives. In addition, they have to deal with the possible effects of the disease and its physical, psychological, and relational ramifications on fertility, pregnancy, parenthood, and offspring.

Sometimes a chronic disease or other serious health disturbance manifests itself during pregnancy, which might have consequences for the pregnancy itself and sexual functioning, future well-being and reproductive choices and possibilities.

However, irrespective of the consequences of medical events, the main predictor for satisfactory sexual functioning after such events is the previous sexual functioning with, on the one hand, a broad repertoire of sexual activities and, on the other hand, the ability of the couple to adjust their sex lives to changing conditions. Whether or not the sexual ramifications of pregnancy and chronic disease become problematic very much depends on the couple’s effectiveness to communicate about wishes, needs, boundaries, and (im-)possibilities concerning sexuality and intimacy. Throughout pregnancy and postpartum, the midwife has the main task to help the woman and her partner communicate effectively about their sexual and intimate needs, expectations, and worries in light of their health disturbances.

Whenever people living with a chronic physical impairment succeed in producing the right stimuli in the right context and communicating effectively about their needs, expectations, and possibilities regarding intimacy and sexuality, they might fulfil the main prerequisites of a healthy sex life (see Chap. 3).

2 Health Disturbances, Sexuality, and Childwish

For most people with a chronic disease or a history of cancer who have a childwish, the decision to try to conceive is more complicated than for most others. The disease and its treatment might harm fertility. Couples are not always able to conceive with penis-in-vagina intercourse due to sexual dysfunction or physical disability. Many chronic medical conditions such as diabetes, hypertension, psychiatric illness, and thyroid disease have implications for pregnancy outcomes and need optimal management before pregnancy. Detailed information on medication use, possible teratogenic effects, and the influence on the pregnancy should be part of the preconception counselling. Couples are also in need of counselling about the many worries they might have: Will the disease negatively affect the course of the pregnancy or infant health? Will the pregnancy influence the course and severity of the mother’s disease? What is the prognosis of the disease concerning parental functioning? Is there a genetic risk?

Many studies have shown that although women and men with chronic diseases (like inflammatory bowel disease, diabetes, and asthma) have more sexual dysfunctions, they are no less sexually active than others. On the other hand, they have significantly fewer children, mainly because of voluntary childlessness.

The midwife should realise that pregnancy for these couples often results from a long process of contemplating possible advantages, disadvantages, complications, and outcomes. Sexuality often has lost its positive connotations about intimacy and pleasure, either because of a preceding period of sexual behaviour exclusively focusing on conception, or because of a process of medically assisted reproduction through IVF, ICSI, or gamete donation.

3 Sexual Sequelae of Chronic Diseases and Other Health Disturbances

Chronic illness can have profound adverse effects on the relationship and sexual satisfaction and also on all phases of the sexual response of both patient and partner. Sexuality is, after all, a complex bio-psycho-social phenomenon. Therefore, the possible effects of chronic disease on sexuality are multifactorial and a result of an interaction of physical, psychological, relational, and social aspects.

On a physical level: Due to diseases such as diabetes and multiple sclerosis (MS), nerves and blood vessels essential for the genital sexual response might have been damaged, resulting in erectile dysfunction in men, and a lack of lubrication, and genital swelling in women or an orgasmic disorder. Hormonal changes, e.g. diminished bioavailability of testosterone and other hormones, might result in reduced responsiveness to sexual stimuli. These sexual dysfunctions also can be the result of medication such as antidepressants, commonly prescribed to people living with a chronic disease.

On a psychological level: Sexual desire might be affected by anxiety, depression, loss of self-esteem, and grief often associated with chronic disease. Surgical procedures and medication (e.g. scarring, amputation, mastectomy, colostomy, and hair loss) can profoundly affect bodily appearance and function, leading to difficulties accepting changes to body image and perceived desirability.

On the relationship level: Chronic illness will also affect the relationship between patient and partner. When the lover becomes the carer, it can be hard to keep the flame of sexuality alive. The stress of illness can exacerbate pre-existing relational problems.

On a social level: There is a prevailing view that sex is the prerogative of the young, the fit, and the attractive. Society, including caregivers, often neglect the fact that sex is an essential part of life irrespective of age and health status and that people living with a chronic disease, physical disability, or cancer want them to pay attention to their worries and problems on sexual and reproductive health.

4 Sexuality and Specific Chronic Diseases and Other Health Disturbances

Some chronic diseases and health disturbances have a higher prevalence than average in the childbearing years. It is not unlikely that the midwife will head-on meet pregnant women or their partners living with these conditions and who would very much welcome a health professional who pays attention to their specific questions, worries, and problems regarding sexual health. Below, we will address the sexual sequelae of some of these conditions in more detail.

4.1 Breast Cancer (BC)

In the Western World, breast cancer is the predominant type of malignancy among women, and 5–15% of women with BC carry the disease in their reproductive years. Because many women postpone childbearing to a more advanced age, an increasing number of women with (a history of) BC have childwish or get the BC diagnosis during pregnancy. Breast cancer can negatively impact sexual functioning in many ways. Research shows that – as in many other situations – the best predictor of the quality of sex life after diagnosis and treatment is the quality of sexual life before the diagnosis [1]. Radiotherapy, chemotherapy, and hormonal therapy all may affect sexual functioning and fertility.

Since the woman should not become pregnant during BC treatment, the couple should use effective contraception. When BC is diagnosed during pregnancy, the woman needs a multidisciplinary approach because of the possible consequences of different treatment modalities for the mother, the pregnancy, and the foetus. Multiple studies showed that pregnancy doesn’t increase the recurrence risk after BC and perhaps even has a protective effect.

After BC, many couples get advice to postpone pregnancy until 2 years after treatment because of psychological reasons and recurrence risk, although there usually is no medical rationale for this advice. Since the biological clock is ticking away the reproductive opportunities, couples often make their own plan anyway.

4.2 Inflammatory Bowel Disease (IBD)

Crohn’s disease (CD) and ulcerative colitis (UC) affect patients’ quality of life in many ways, and most patients with IBD will carry the diagnosis during their reproductive years or already since puberty or adolescence.

Body image, sexuality, and relationships are some of the major concerns of IBD patients, but these concerns are rarely spontaneously expressed. Almost half of IBD patients report that their disease prevented them from pursuing intimate relationships. Sexual dysfunctions in IBD are reported by 45–60% of women and 15–25% of men. Depression and exacerbation of the disease increase the likelihood of sexual dysfunction. Women have more concerns about self-image, feeling alone, and being fearful of having children [2]. Especially in women who have had surgery, a negative body image prevents them from entering a relationship and enjoying sexual encounters. Although the rate of sexual activity of IBD patients is similar to healthy individuals, their satisfaction is significantly lower than that of the general population.

IBD is not associated with decreased fertility in patients who have not undergone surgery. Yet these women are significantly more likely to remain (voluntarily) childless compared with the general population. That is due to (often unfounded) fears about the possible impact of IBD and medication on pregnancy and neonatal outcomes, worries about the impact of pregnancy on IBD and maternal health, and fears regarding hereditary transmission [3].

4.3 Cervical Cancer

About 75% of cervical cancer cases are detected in women aged 30–40, 20% in women aged 20–29, and only 1–2% of affected women are under 20. The development of cervical cancer is related to exposure to the human papillomavirus (HPV). The incidence dropped significantly in countries with screening programmes (Pap smears) and HPV vaccination. The HPV infection often occurs shortly after the first sexual activity. HPV infections are more likely to occur in adolescent women than in older women because the transformation zone of the cervix is more vulnerable in young women. In adolescents and young women, most HPV infections are transient and ‘cleared’ (healed by themselves within 2 years). There is evidence that individuals who have been victims of sexual abuse as children have higher rates of anogenital HPV at a younger age than individuals without such a history [4]. Some 3% of cervical cancer cases are diagnosed during pregnancy. Most of these women have early-stage diseases. Research suggests that cervical cancer diagnosed during pregnancy does not grow faster and does not spread more likely than outside pregnancy. Therefore, in most cases, treatment can be postponed until after childbirth. After cervical cancer treatment, the incidence of sexual dysfunction is high (between 40% and 100%) due to the physical, emotional, and relational impact. Surgery (with the removal of the ovaries), radiotherapy, and chemotherapy may cause loss of ovarian function with far more hormonal implications than natural menopause. The additional loss or threat of losing fertility may profoundly affect identity, self-image, mood, and sexuality.

4.4 Diabetes Mellitus (Type 1 DM)

Diabetes mellitus type 1, which usually starts in adolescents and young adults, affects both women and men in many different ways, including effects on sexuality, fertility, pregnancy, and offspring.

Because type 1 DM influences fertility, the patient/couple deserves expert guidance in pregnancy planning and extensive preconception counselling. After conceiving, the main issue is to control the DM in the woman as closely as possible.

Deterioration in sexual functioning is one of the significant and earliest DM complications resulting from combinations of microvascular and/or nerve damage, fluctuating blood sugar levels, hormonal changes, and the psychological effects of having a chronic disease with many implications for QOL. In men, the primary complications are erectile dysfunction, ejaculatory dysfunction, and loss of sexual desire. Although often disregarded, women experience similar sexual problems, including diminished lubrication, dyspareunia, decreased sexual desire, and orgasmic difficulties [5]. Sexual dysfunctions are most prevalent in diabetes patients with vascular (retinopathy) and/or nerve (neuropathy) damage. Young women with type 1 DM using an insulin pump have the same prevalence of sexual dysfunctions as healthy age-matched women. That differs from women using multiple daily insulin injections since their prevalence of sexual dysfunctions is significantly increased, suggesting that fluctuations in glucose levels harm sexual functioning.

Gestational diabetes develops during pregnancy. Whereas it can negatively influence sexual functioning during pregnancy and postpartum, there is no difference with women who have an uncomplicated pregnancy.

4.5 Multiple Sclerosis

Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system, more prevalent in the northern hemisphere. It is also more prevalent in women and tends to start in the 20–40-year age range, the period with high sexuality and reproduction expectations. The disease usually causes relapsing-remitting attacks of inflammation, demyelination, and axonal damage, leading to various degrees and spectra of neurological symptoms and disability. The literature reports sexual dysfunctions in 45–90% of all MS patients. In a study of people with MS, 63% reported that their sexual activity had declined since their diagnosis. Nerves involved in the sexual response may be damaged, resulting in arousal and orgasm disorders. MS symptoms such as fatigue or spasticity may cause sexual problems. As in other chronic disabilities, the psychological and relational factors contributing to changes in sexual functioning are multifactorial. They may involve loss of self-esteem, depression, anxiety, anger, and the stress of living with a chronic illness.

Although a pregnancy was often discouraged in the past, there is extensive evidence that pregnancy reduces the number of relapses related to high estriol levels during pregnancy [6]. Postpartum, there is an increased risk of relapses. Since breastfeeding reduces the risk of relapses, exclusive breastfeeding should be promoted for at least 3 months as long as no MS therapeutics are used that may be harmful to the baby. Two years after childbirth, there is no difference in disability between women who have been pregnant and those who were not.

4.6 Rheumatic Disease

The rheumatic disease group consists of more than 100 different types of conditions that affect joints, tendons, ligaments, bones, muscles, and often other organs. Most of these conditions are autoimmune diseases. Rheumatic diseases that might affect people at a young age are, for instance, juvenile idiopathic arthritis (JIA), rheumatoid arthritis (RA), and systemic lupus erythematosus (SLE).

Sexual problems among patients with rheumatic diseases are common [7]. Lack of mobility and musculoskeletal pain can restrict intercourse and limit sexual activity. Fatigue, mental distress, depression, functional limitations, low levels of self-efficacy, and a negative body image are associated with sexual problems. Many of the drugs used in the treatment of rheumatic disease might affect sexual functioning as well. Patients with RA, JIA, and SLE have a smaller family size. The rate of infertility in young women with rheumatic disease is significantly higher than in women who develop it later in their life. The causes of fewer children include impaired sexual function, decreased gonadal function, pregnancy loss, effects of therapy on pregnancy, and personal choices. Voluntary childlessness is related to disease-related concerns such as deleterious effects of drugs on offspring, ability to care for small children, or fear to transmit the disease to children. Preconception counselling is necessary since drug therapy can influence fertility and obstetric outcomes because of gonadal toxicity and teratogenicity. Often pregnancy has to be postponed, and the woman should keep a safety interval between drug discontinuation and conception. About 75% of women with rheumatic disease experience improving symptoms during pregnancy. Therefore, pregnancy results in better sexual lives for some couples because of reduced pain and improved mobility. After birth, 90% report a relapse within 3 months. Combined with the more common postpartum sexual and relational obstacles, this often has prolonged adverse effects on sexuality. Most, but not all, anti-rheumatic medications are compatible with breastfeeding [8].

4.7 Asthma

Asthma is a common chronic condition among women of childbearing age with a 1–13% prevalence. Studies have shown that at least two-thirds of people living with asthma feel that asthma negatively affects their sexual life because of the impact of the physical, practical, psychological, and relational effects of having a chronic disease. Of the people with severe asthma, 10–13% feel the impact of breathlessness and fear it during physical intimacy, kissing, and sexual activity [9]. Chronic fatigue, the side effects of medication, and the necessity to have a nebuliser at hand when being intimate are only some of the factors people with asthma and their partners have to cope with when organising their sexual activity.

Corticosteroid treatment and limited physical ability may influence appearance and body image, causing low self-esteem that often contributes to decreased sexual activity. Corticosteroid treatment might result in decreased sexual responsivity due to decreased bioavailibility of androgens.

Sexual activity in general and especially orgasm can trigger asthma bronchospasms, sometimes even requiring emergency care and hospitalisation, which can induce fear for future sexual activity.

During pregnancy, the course of asthma symptoms is unpredictable, with one-third improvement, one-third no change, and one-third deterioration. Likewise, some women will perceive improvement in sexual functioning, while others experience the opposite. In general, women can continue asthma medication throughout pregnancy. Inhalation corticosteroids are safe for mother and child and are highly effective for controlling asthma and reducing asthma exacerbations. On the other hand, maternal asthma exacerbations are associated with adverse perinatal outcomes such as preeclampsia, preterm birth, and low birth weight. Inhalation corticosteroids are safe for use during breastfeeding. Breastfeeding diminishes infant wheezing and asthma, at least during the first few years.

4.8 HIV

The increased access to effective antiretroviral treatment (ART) has made HIV comparable to other chronic diseases. For HIV-positive women, sexual and reproductive health are complex concerning partner relationships, sexual behaviour, reproductive choices, pregnancy, and parenthood. HIV-positive women have more sexual problems than uninfected women and significantly lower sexual desire, activity, and satisfaction scores. Although effective antiretroviral therapy (ART) resulting in an undetectable viral load prevents transmission to one’s partner or baby, the fear of viral transmission and feelings of contagiousness often impact sexual behaviour and reproductive choices [10]. Motherhood seems to make the burden of being HIV-positive easier to bear. However, contrary to their wishes, HIV-positive women often have no partner, are not sexually active, and stay childless. Women with an undetectable viral load who daily take their ART and have regular controls can safely breastfeed as long as they exclusively breastfeed for at least 6 months. Mixing breastmilk and other foods before 6 months increases the transmission risk.

4.9 Congenital Heart Disease

Approximately 1% of all newborns have congenital heart disease (CHD). In the more affluent countries, 85% of these children survive into adulthood due to successful treatment. Women with CHD have high levels of concern regarding their fertility and risk of genetic transmission of CHD, and concerns about adverse effects of pregnancy on their own health [11, 12]. Pregnancy carries potential risks for these women and their children. Therefore, planning a pregnancy needs careful cardiological and genetic counselling. Although being one of the most important areas of concern for women with CHD and their families, we know little about the impact of pregnancy and childbearing on long-term health. Adolescents and young adults with CHD start later and have less sexual activity than their healthy peers. Women with CHD have more sexually related distress and dysfunctions and decreased sexual activity. However, the risk for adverse cardiovascular events during sexual activity is low. Even lower death rates have been reported for specific groups, such as women in general and asymptomatic young adults with CHD. There is no reason to discourage any form of sexual activity during pregnancy.

4.10 Chronic Kidney Disease (CKD)

Most patients with chronic kidney disease have sexual and reproductive problems. Common disturbances include menstrual irregularities, decreased sexual desire, sexual arousal disorders, and decreased fertility. These disturbances are related to psychological distress and depression, body changes and fatigue, organic factors such as uraemia, gonadal irregularities, and many other comorbid conditions and medications. Some of these conditions improve after initiation of dialytic therapy; others will worsen. In general, advice is given to uraemic women not to become pregnant while on dialysis.

Kidney transplantation improves sexuality, fertility, and reproductive possibilities in women and men with CKD. Although most pregnancies in kidney transplant recipients are successful, comorbidities (such as hypertension or immunosuppression side effects) that are not the result of the transplant itself often complicate these pregnancies. As a result, there is a high rate of preeclampsia, preterm deliveries, Caesarean sections, and small-for-gestational-age babies. We did not find any study on sexual functioning during pregnancy in women with CKD. Since studies have convinced us that most immunosuppressives are safe, the number of breastfeeding mothers on maintenance-immunosuppression after kidney transplantation increases.

5 Conclusions

Patients with chronic medical conditions expect their caregivers to proactively discuss uncertainties, worries, and problems concerning sexuality, contraception, fertility, reproduction, pregnancy, and parenthood. Unfortunately, very few professionals do so. Moreover, in obstetrical care, sexuality is a neglected area as well. By raising the topic of sexuality during pregnancy and postpartum in patients with a chronic disease, the midwife may help women and their partners to express their needs, expectations, and worries regarding intimacy and sexuality in the light of their health disturbances, possible comorbid sexual dysfunctions, and their new roles as parenting couple.