Sexuality and the CF Adult

Condensed from the talk by Barbara Palys

Fall 1994

Barbara Palys, president and co-editor of the International Association of Cystic Fibrosis Adults (IACFA) who also happens to have CF, gave an in-depth presentation on how the physical manifestations of sexuality may differ for men and women with CF. She also addressed how men and women with CF successfully cope with these differences.

To begin with, puberty is delayed in boys and girls with CF by an average of one to four years. Approximately 97-98% of men with CF are sterile due to an incompletely formed or blocked vas deferens (the tube which carries sperm from the testicles to the penis). The sperm cells made in the testes are normal, but they are blocked there. Effects are similar to those of a vasectomy, there is ejaculate fluid without sperm. (This does not affect the sexual experience.)

Sterility in men can complicate the development of personality with fears of inadequacy, especially during the fragile adolescent years. Parents need to be aware of this and prepare the child effectively before the onset of puberty. Sterility can also magnify a man's sense of futility about the future.

There are options for men who desire fatherhood which include artificial insemination or adoption. Also, recent technological advances, including microscopic epididymal sperm aspiration (MESA) with in-vitro fertilization, present limited options for fathering one's own child. With MESA, since it is known that at least one partner has CF, there will be a risk of inheriting CF. A genetic counselor should be consulted.

Women with CF often experience delays or irregularities with menstruation, or even amenorrhea, which are usually related to low body weight and malnourishment. Women with CF can and do ovulate but perhaps not on a regular basis. Unlike the man, the woman is not genetically sterile. However, the possibility of sterility or lowered fertility should not be denied. In general, these women have a much lower pregnancy rate (estimates of female fertility vary from 0 to 20%). This can be related to nutritional status, or perhaps the high viscosity of cervical mucus which can impair the motility of healthy sperm.

Successful pregnancy depends upon overall health status. Medically, the following conditions are recommended: lung functions above 70-75% of normal, good overall physical condition and weight, good psycho-emotional and social support, good medical compliance and regular performance of physiotherapy, normal fertility (hormonal therapies to cure sterility are not recommended), and pancreatic sufficiency. A woman with CF contemplating pregnancy should also consider the following: pregnancy causes an increased body energy expenditure of 150 to 200%, exacerbation of chronic lung infection may require prolonged antibiotic treatment, hyperalimentation may be required during pregnancy and lactation, long-term hospitalization may be required, and there may be permanent impairment of overall physical status. This decision should not be taken lightly. And again, a genetic counselor should be consulted.

Finally, Palys shared studies showing that adults with CF generally have successful marriages and reasonable chances for normal sexual functioning. When there was dysfunction, desire deficiency was most consistently listed as the problem. Self-image, self-esteem and parental separation/individuation problems were usually to blame. But ultimately, Ms. Palys stated, with a little ingenuity, sensitivity and much, much practice, adults with CF can overcome these issues affecting their sexuality.

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