Spina bifida and sexuality

Linstow, Michael Ernst von; Biering-Sørensen, Ida; Liebach, Annette; Lind, Marianne; Seitzberg, Aase; Hansen, Rikke Bølling; Biering‐Sørensen, Fin

doi:10.2340/16501977-1863

Cited by 37 publications

(28 citation statements)

References 32 publications

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“…5 Clean intermittent catheterization (CIC), the use of bladder-active medications (BAMs), and close urological follow-up can mitigate many of the potentially life-threatening complications of neurogenic bladder dysfunction, but patients' quality of life (QOL) is considerably affected by the lifelong burden of these interventions, the lack of control of their ability to empty their bladders, and by incontinence and sexual dysfunction. 4,5,9,10,13,15,21,25,[28][29][30] For more than 100 years, researchers and clinicians have pursued a myriad of surgical remedies to allow reinnervation of the urinary bladder, attempting a variety of nerve repair and transfer techniques in experimental animals and in humans. 11 While there has been great success in the clinical use of nerve transfer techniques to reinnervate peripheral nerves of the extremities, 3 there is no surgical nerve transfer or repair procedure that is widely used in patients with neurogenic bladder dysfunction.…”

mentioning

confidence: 99%

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Tuite

Polsky²,

Homsy³

et al. 2016

PED

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OBJECTIVE Xiao et al. and other investigators have studied an intradural somatic-to-autonomic (e.g., L-5 to S3–4) nerve transfer as a method to create a reflex arc to allow bladder emptying in response to cutaneous stimulation (the Xiao procedure). In previous clinical studies of patients with spinal dysraphism who underwent the Xiao procedure, high success rates (70%–85%) were reported for the establishment of a “skin-CNS-bladder” reflex arc that allows spontaneous, controlled voiding in children with neurogenic bladder dysfunction. However, many of these studies did not use blinded observers, did not have control groups, and/or featured only limited follow-up durations. METHODS A randomized, prospective, double-blind trial was initiated in March 2009, enrolling children with myelomeningocele (MM), lipomyelomeningocele (LMM), and neurogenic bladder dysfunction who were scheduled for spinal cord detethering (DT) for the usual indications. At the time of DT, patients were randomized between 2 arms of the study: half of the patients underwent a standard spinal cord DT procedure alone (DT group) and half underwent DT as well as the Xiao procedure (DT+X group). Patients, families, and study investigators, all of whom were blinded to the surgical details, analyzed the patients' strength, sensory function, mobility, voiding, and urodynamic bladder function before surgery and at regular intervals during the 3-year follow-up. RESULTS Twenty patients were enrolled in the study: 10 underwent only DT and the other 10 underwent DT+X. The addition of the Xiao procedure to spinal cord DT resulted in longer operative times (p = 0.024) and a greater chance of wound infection (p = 0.03). Patients in both treatment arms could intermittently void or dribble small amounts of urine (< 20% total bladder capacity) in response to scratching in dermatomes T-9 through S-2 using a standardized protocol, but the voiding was not reproducible and the volume voided was not clinically useful in any patient. Voiding in response to scratching was not more frequent in patients who underwent DT+X compared with those who underwent only DT. Bladder contractions in response to scratching occurred in both treatment arms at various intervals after surgery, but they were not more reproducible or more frequent in the patients who underwent the Xiao procedure than in the patients who did not. No patient in either treatment arm was continent of urine before, during, or after the study. CONCLUSIONS Patients with MM and LMM who underwent the Xiao procedure during spinal cord DT were no more likely to be able to void, to control their urination, to achieve continence, or to have a demonstrable urodynamic bladder contraction in response to cutaneous stimulation than patients who underwent only spinal cord DT. This study, in the context of disappointing results reported in other recent studies of the Xiao procedure, raises doubts about the clinical applicability of this procedure in humans until further basic science research is performed.

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mentioning

confidence: 99%

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Tuite

Polsky²,

Homsy³

et al. 2016

PED

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“…One study showed that 51% of patients with myelomeningocele reported that sexual life was a failure. 15 To complicate the picture it was found that patients with spina bifida who had urinary incontinence were less likely to be sexually active than their peers. 16 …”

Section: Discussionmentioning

confidence: 99%

Pelvic Organ Prolapse in Female Patients Presenting to Transitional Urology Care Clinic

et al. 2015

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Purpose Patients with congenital genitourinary abnormalities are growing into adulthood and their expectations, especially in the areas of sexual function and fertility are creating unforeseen challenges for health care providers. We review the incidence and management of pelvic organ prolapse at our Transitional Urology Clinic. Materials and Methods This study is a retrospective chart review of the presentation and treatment of patients with clinically bothersome pelvic organ prolapse seen at our tertiary Transitional Urology Clinic during 2012 to 2015. Results Seven patients with a mean age of 22.8 years presented to our clinic with clinically bothersome prolapse. Four patients had myelomeningocele, 2 had sacral agenesis and 1 had bladder exstrophy. All were on self-catheterization. Three patients were sexually active and 1 had an intact uterus and desired fertility. Bothersome symptoms included vaginal bulge in 6 cases, difficult vaginal intercourse in 1 and difficult catheterization in 1. For the leading edge of Bp (anterior compartment) prolapse the median POP-Q (Pelvic Organ Prolapse Quantification System) stage was 3 (range 1 to 3), for Bp (posterior compartment) prolapse it was 1 (range 0 to 3) and for C (vaginal vault or cervical) prolapse it was 2 (range 1 to 3). Management included pessary in 1 case, hysterectomy with bilateral uterosacral ligament suspension in 4, sacrocolpopexy in 1 and observation in 1. Mean followup was 17.6 months (range 1 to 92). One of the 5 patients treated with surgical intervention had recurrence in the anterior compartment and vaginal vault. Conclusions Females with congenital genitourinary anomalies present with pelvic organ prolapse at a much younger age and a more advanced stage. There is a paucity of literature on the epidemiology, presentation and management of pelvic organ prolapse in this patient population.

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“…79 By contrast, Game et al found that UI was the major factor related to deceased sexual activity –decreased desire, arousal and receptivity – among women with myelomeningocele. 74 Even the experience of wearing pads was seen as a barrier to intimacy.…”

Section: Findings and Recommendationsmentioning

confidence: 94%

“…74–76 Issues regarding privacy, relevant to many women with CGCs who may live with their parents until at least late adulthood, play a large role in women’s sexual experiences. 74, 77–79 Research is needed to better understand the barriers to sexual participation in men and women with CGCs and to develop and validate interventions to overcome these barriers.…”

Section: Findings and Recommendationsmentioning

confidence: 99%

“…81 The lack of information on the impact of spina bifida on sexuality has persisted during the past decade, with >30% of patients in 2002 and 2014 reporting having limited information despite ongoing interactions with healthcare providers. 76, 79 Individuals with sexual limitations tend to lack sufficient knowledge about reproductive anatomy and physiology, available treatments for erectile or ejaculatory dysfunction, or methods of contraception or protection from disease. Among those who are sexually active, <20% use contraception.…”

Section: Findings and Recommendationsmentioning

confidence: 99%

See 1 more Smart Citation

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

Hsieh

Wood

Dicianno

et al. 2017

Urology

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Over the last five decades, healthcare advances have yielded quantum improvements in life expectancy for individuals with congenital genitourinary conditions (CGCs), leading to a crisis of care. Many individuals with CGC enter adulthood unprepared to manage their condition. Pediatric CGC specialists lack training to manage adulthood-related healthcare issues, while adult genitourinary specialists lack training within the context of CGCs. To address these challenges, the National Institutes of Diabetes and Digestive and Kidney Diseases convened individuals with CGCs and experts from a variety of fields to identify research needs to improve transitional urology care. This manuscript outlines identified research needs.

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Spina bifida and sexuality

Cited by 37 publications

References 32 publications

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Lack of efficacy of an intradural somatic-to-autonomic nerve anastomosis (Xiao procedure) for bladder control in children with myelomeningocele and lipomyelomeningocele: results of a prospective, randomized, double-blind study

Pelvic Organ Prolapse in Female Patients Presenting to Transitional Urology Care Clinic

Research Needs for Effective Transition in Lifelong Care of Congenital Genitourinary Conditions: A Workshop Sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases

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