Care needs and self-induced measures of women with postpartum pelvic floor disorder- Results of a social media-based survey of 2930 women

Postpartum pelvic floor disorder (PFD) defined as urinary, defecatory and sexual dysfunction occurs in about 40% of women after delivery [1]. Women with severe pelvic disorders can have access to specialized pelvic floor physical therapy. Therefore, a referral by the outpatient gynecologist is needed.

Besides the participation in postpartum courses, some women use electric or non-electric devices to treat PFD. Some of these devices are not financed by public health insurance. Current studies show that postpartum pelvic floor muscle training decreases the rate of urinary incontinence 6 months after confinement [2]. Furthermore, electrical devices seem to have a positive influence on the development of symptoms associated with PFD. For example, transvaginal electrical stimulation for as little as 5 sessions might be beneficial for helping postpartum women to control pelvic muscle contractions and to increase muscle strength [3]. Other studies report that physical therapy ± electrostimulation was the most effective non-surgical intervention [4].

However, there is limited information about PFD in the perinatal period [5]. Knowledge about postpartum PFD and therapeutic options among healthcare workers can vary [6]. Although knowledge among healthcare workers is available patients are not systematically asked about PFD-related symptoms [6]. Current data state that the awareness und knowledge about postpartum PFD among patients is limited and seems to be depended from the educational status [6]. Though the impression in occupational routine is that an amount of patients seem to be informed about PFD, but less is known about the intervention and care needs of women with postpartum PFD. Furthermore, there are less studies assessing self-induced measures of women with postpartum PFD.

The aim of this analysis was to analyze care needs and self-initiated compared to gynecologist-initiated measures to strengthen the pelvic floor in postpartum women in relation to incontinence and sexual dysfunction. Furthermore, influencing factors for self-initiated measures were evaluated.

An anonymous online survey (via LimeSurvey) was conducted between September and October 2022 and distributed via social media (Instagram and Facebook). The survey explicitly addressed mothers with and without pelvic floor disorders up to 5 years postpartum (inclusion criteria). When possible, validated instruments were employed to assess incontinence (ICIQ-SF) and Sexual Functioning (PISQ-IR: Condition Impact). The questions on the use of therapeutic measures, as well as on the interaction with a gynecologist, were based on self-developed items. The questionnaire was developed in cooperation with clinicians, physical therapists and social scientists. A pre-test with the target group took place regarding comprehensibility and technical implementation. Statistical analysis was performed using STATA 15 and R. Patient characteristics were described using mean (SD) and range or count (percentages), as appropriate.

Overall, the data of 2.930 women were analyzed. The mean age was 32.9 years (18–49, SD 4.2) and on average 1.5 children were delivered (1–6, SD 0.7). Further characteristics can be found in Table 1. Participants were asked how often UI occurs. In total, 51.6% of the participants had no UI, whereas 49.4% had UI. Detailed answers concerning the ICIQ-SF are given in Table 2. The participants of the survey were asked how much urine leakage interferes with their everyday life. The answers were given on a scale between 0 (no deal) and 10 (great deal). The mean score was 2.9 (SD 2.0). The mean ICIQ-SF Score was 3 (SD 3.8). Fecal incontinence occurred in 162 out of 2819 (5.7%) women. We found that only 22.9% of the participants have ever talked to their gynecologist about PFD. Furthermore, only 40.3% (n = 241) of women were actively asked by their gynecologists for the occurrence of UI or PFD among those who suffered from PFD. However, 63.4% (n = 1193) would have liked to be asked by their gynecologist if UI or PFD symptoms occurred. 15.6% of those participants with UI or PFD did not feel taken seriously and 21.2% (n = 84) of the participants with UI or PFD felt taken less seriously by their gynecologist.

We asked the participants of the survey which kind of self-induced measures they have performed. Figure 1 illustrates self-induced measures as well as measures induced by the participants’ gynecologists in all women, who reported any incontinence symptoms. Overall, 79.3 (%) of the participants of the survey with UI underwent measures to deal with the complaints. In total, 155 of 1390 (11.2%) used electric vaginal stimulators. Interestingly, 371 out of 1020 participants (26.7%) used books and internet resources to get instructions for pelvic floor exercises. While 18,3% of the participants (n = 255) used loveballs, more than a half (53.1%, n = 738) used videos with instructions for pelvic floor exercises.

We further analyzed whether the need for self-induced intervention is influenced by other factors, such as by the level of education, age or ICIQ_SF Score. We were able to show that ICIQ-SF Score was significantly associated with all self-induced measures. High School diplomas and academic degrees were associated with the use of love balls (p < 0.05). If, in addition to incontinence, the impairment of sexuality due to pelvic floor disorders (PISQ-IR Condition Impact) is included in the multivariate model, it becomes apparent that the influence of the ICIQ-SF Score is no longer significant, whereas the PISQ-IR is significant in sexually active women (Table 3).

We report the results of an anonymous social media-based survey assessing PFD and the needs of women up to 5 years postpartum. We were able to show that 48.4% of the women had urinary incontinence with varying frequency. Former published data estimated an even lower prevalence of postpartum urinary incontinence in women with a wide range between 3 and 40% [8]. Fecal incontinence seems to be very rare in our study population with 5.7%. According to published data, 2.4% to 8.0% of postpartum women suffer from involuntary loss of formed stool [9‐11]. Differences can be explained by differences in study design, subgroups and populations being studied.

Interestingly, measures induced by the outpatient gynecologist were pelvic floor training, physical therapy, referral to a urologist and pessary therapy. Pelvic floor muscle training is known to be effective in the treatment of pelvic organ prolapse in comparison to no treatment [6]. Current studies also show that postpartum pelvic floor muscle training decreases the rate of urinary incontinence 6 months after confinement [2], but the long-term efficacy of postpartum pelvic floor muscle training is not clear [12].

Burkhart et al. reported that about 2/3 of their participants have no awareness of pelvic floor rehabilitation to address PFD [13]. However, a part of the population seeks further solutions for their complaints. A relevant number of participants in this study used different sources (books, internet, videos) to receive information about pelvic floor exercises, which stresses the necessity for information about the treatment or prevention of PFD [14]. The use of loveballs shows that a part of the study population seems to be open minded to alternative, non-conventional methods.

Our study shows that the majority of patients with PFD has not been asked about having (typical) PFD complaints and a relevant amount did not feel taken seriously by their gynecologist. These results highlight the need for new guidelines or policies that address the questioning of symptoms related to PFD after delivery. Another mandatory examination at 3 months post-partum seems conceivable, analogous to the maternity records of the Federal Joint Committee (G-BA). Both UI and PFD could be explicitly addressed at that time. The large number of patients undergoing self-induced measures shows the unmet intervention need.

Interestingly, ICIQ-SF Score was associated with the use of all queried self-induced measures, which shows the relation between patient-reported complaints and the intervention. The use of love balls was associated with a higher educational level.

A previously published study shows that the level of education and willingness to participate in a postpartum pelvic floor muscle training program is significantly related, which is in line with our results [15]. In the context of interpretating results, it has to be mentioned that approximately 89,5% of our study members have at least general or subject-related qualifications for university entrance with 62,6% holding a form of university degree, which is reflecting a well-educated study population. The adaption of the model by considering sexuality shows that this restriction of sexuality may even be more burdensome for the women than incontinence alone, as it is then associated to a higher degree with the utilization of measures.

Even though a large number of respondents could be recruited through social media, a possible selection bias cannot be completely excluded as described before. However, the fact that the data are approximately normally distributed in many variables speaks for a broad coverage of the target population. The low number of missing values shows the willingness to provide information on these topics as well. The low variance explanation by the multivariate models shows that there are further influencing factors beyond the variables considered. However, due to the complexity of predicting behavior, this was to be expected.

The presented study exhibits the unmet needs of postpartum women and their willingness to undergo self-induced measures. Consequently, postpartum PFD should be addressed more frequently in the outpatient setting. Additionally, more systematic information about the treatment of postpartum PFD could help to address unmet care needs and improve interventions.