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Young women on hemodialysis (HD) experience hormonal derangements and sexual dysfunction due the disruption of the hypothalamus-hypophysis-gonadic axis affecting their menses, fertility and sexual life. The probability of a successful pregnancy is reduced in end-stage kidney disease and pregnancy outcomes are inferior compared to the general population. Counselling is often neglected if not explicitly requested and a sense of shame may concur in not discussing these issues. Women in reproductive age are a minority among dialysis patients, and being a minority may also be one reason why they are overlooked. The aim of this pilot study was to retrieve patients’ level of knowledge about these themes and barriers in our hemodialysis unit to implement more efficient counselling strategies.
We enrolled all women in reproductive age (18-50 years) chronically hemodialyzed at our Center in Le Mans, central France. Information about patients’ knowledge of sexual and hormonal dysfunction in CKD was retrieved by means of a simple ad hoc 9 question survey (Figure 1) administered by the attending nephrology fellow (GC).
Out of 160 chronic HD patients in our center, only 7 were females in reproductive age (mean age 38±8 years) whose characteristics are shown in Table 1. Five had regular menses and two were on menopause (50 and 41 years, respectively). 3/7 had a regular partner and one declared that her relationship changed after HD start. Only one patient declared to think about having a baby. Only three were aware of the possibility of having a pregnancy while on hemodialysis, one was informed by her gynecologist, one had personal experience and one was informed through social media. Two patients had pregnancies before HD start, while one conceived while transplanted and experienced graft failure in pregnancy, was on daily HD since 16 weeks of gestation and experienced severe preeclampsia which ended with birth at 26 weeks of gestation of a baby, who survived with severe residual deficits. All responders declared to know about contraception but only two were informed by their gynecologists after HD start, and none by their nephrologist. Only one patient declared to use condoms. Sexual dysfunction was a reason of concern only in one patient, the youngest one and the one who desires a pregnancy. Finally, 5/7 declared to be interested in specific counselling while one was ashamed of speaking about it and one already programmed tubal ligation. Considering the interest and barriers we produced a written informative material, validated by internal discussion with patients and nurses, to ease communication (Figure 2).
Conclusions
Only a minority of HD patients in a large hospital center are women in reproductive age; most of them were not fully aware of the sexual issues related to CKD. Sexual counselling should be part of the routine consultation of patients about to start HD, and pregnancy and contraception should be discussed and not discouraged. Barriers to an overt communication about sexual themes might be overcome by reassuring patients that they can rely on their nephrologist to manage pregnancy, contraception or sexual health.