More than half of people with a permanent sacral nerve stimulation implant experienced at least one adverse event in pooled Australian evidence reviewed by the Medical Services Advisory Committee. The figure was 51.6%, covering outcomes from minor discomfort through lead problems and further surgery, as reported in the Australian MSAC assessment. This is a realistic starting point for planning, not a reason to panic.
Sacral nerve stimulation may help people with difficult-to-treat urinary or faecal incontinence, urinary urge incontinence, or urinary retention. It also means living with an implanted device, programming adjustments, wound care and follow-up appointments. For some patients, revision surgery becomes part of that care.
Understanding sacral nerve stimulation side effects helps patients, families, NDIS support coordinators and aged care teams plan for both everyday discomfort and possible device problems. It also makes it easier to recognise symptoms that need clinical attention.
Table of Contents
- Understanding Sacral Nerve Stimulation Side Effects
- How Sacral Nerve Stimulation Works
- Most Common Side Effects Patients Experience
- Side Effects During the Trial Phase Versus Long-Term Use
- Managing Discomfort and Daily Side Effects
- Device Complications and Revision Surgery
- When to Contact Your Clinician
- Making Informed Decisions About Your Continence Care
Understanding Sacral Nerve Stimulation Side Effects
Adverse events range from manageable discomfort to problems requiring surgery, and Australian MSAC evidence maps that full spectrum. The review found no association with mortality and described many events as minor, while also identifying a meaningful burden of device-related problems. For NDIS participants, families and aged care teams, this distinction helps set realistic expectations about follow-up and possible revision surgery. (MSAC urinary assessment, 2024)
The practical questions are What might I feel? How long could it last? Can programming manage it? When might I need a surgeon? Side effects should be considered alongside the treatment's potential benefit, not viewed in isolation.
Practical rule: A new symptom deserves attention when it is worsening, changes the benefit you were receiving, affects mobility or sleep, or appears alongside wound changes.
Patients may experience soreness around the surgical site, pressure from the pulse generator, tingling or jolting during stimulation, altered bladder or bowel sensations, skin irritation, lead displacement or infection. Some symptoms settle as tissues heal or after the clinician adjusts the settings. Others indicate a mechanical problem that changing stimulation levels cannot correct.
The infographic uses figures outside the Australian MSAC dataset supplied for this article, so it should not estimate an individual patient's risk. The national assessment recorded lead revision or replacement in 241 of 1,444 patients, or 16.69%. That figure places revision within the range of outcomes clinicians and families should discuss before implantation.
It also recorded unspecified pain in 205 of 901 patients, or 22.75%. This rate shows why post-implant monitoring matters. Even after benefit is achieved, persistent discomfort can require clinical review, programming changes or further treatment. These figures describe groups of patients, not a prediction for one person.
How Sacral Nerve Stimulation Works
Sacral nerve stimulation is sometimes described as a pacemaker for bladder and bowel control. The comparison is useful, although the systems aren't identical. A small pulse generator sends carefully programmed electrical impulses to nerves in the lower back that help coordinate bladder, bowel and pelvic floor activity.
The treatment usually involves two stages.
The temporary evaluation
During a percutaneous nerve evaluation, often called a PNE trial, a clinician places a temporary lead near the relevant sacral nerve. The lead connects with an external stimulator, allowing the care team to assess whether symptoms improve before a permanent generator is implanted.
The trial also gives the patient a chance to notice how stimulation feels. A person may feel mild tingling, pressure or an unfamiliar sensation in the buttock, pelvic area or leg. The lead and dressing can make movement, sitting and sleeping feel different, so patients should record both symptom improvement and discomfort.
The permanent implant
If the trial provides meaningful improvement, the clinician may recommend implanting a permanent pulse generator beneath the skin, commonly in the upper buttock. The lead remains positioned near the sacral nerve and the generator delivers programmed stimulation over time.
Side effects can appear at different points. Wound soreness and bruising are most relevant soon after implantation. A change in stimulation, new pulling or a sudden loss of benefit may appear later if the lead shifts or the settings no longer suit the patient's body and symptoms.
Sacral stimulation is different from spinal cord stimulation, which is used for selected chronic pain conditions. Readers who are comparing neuromodulation approaches may find this overview of a spinal cord stimulator for back pain useful, but pain treatment and continence treatment target different nerves and goals.
Most Common Side Effects Patients Experience
Patients usually describe side effects in practical terms, not medical language. They may feel a “pull” when sitting, notice stimulation spreading into a leg, or find that bladder or bowel control is no longer as good. These details help the clinical team work out whether the cause is normal healing, a setting that needs adjustment, or a lead or device problem.
The Australian MSAC evidence gives this discussion a more useful national context than general device information. As reported in the MSAC urinary assessment cited earlier, pain was the most frequently recorded symptom in that evidence set, while lead revision or replacement was a common reason for further intervention. A separate MSAC evidence review found lead replacement or repositioning was the most frequent technical complication in pooled randomised trials. These findings do not predict what will happen to one person, but they show why comfort and lead performance need review over time. (MSAC evidence review)
How symptoms may feel
- Pain near the generator or lead: Tenderness, pressure, aching or sensitivity may occur when clothing, a chair or a sleeping position presses on the area. Pain that persists or worsens should be assessed rather than managed repeatedly at home.
- Lead displacement or another lead problem: Reduced continence benefit, a sudden change in stimulation or a new pulling sensation can indicate that the lead position or programming needs attention. The Australian MSAC faecal incontinence assessment recorded electrode or lead migration and displacement during PNE, showing why temporary leads also require observation. (MSAC faecal incontinence assessment)
- Unwanted stimulation: Tingling, buzzing, jolting or radiating sensations may be felt in the buttock, pelvic area, leg or foot. Reprogramming can sometimes settle an unwanted pattern, but a persistent or newly spreading sensation should be reported.
- Wound and skin problems: Bruising, mild tenderness and local irritation may follow surgery. Increasing redness, warmth, drainage or swelling is different and may indicate infection or another complication.
- Changes in bladder or bowel function: Settings may affect symptoms while they are being adjusted. Unexpected retention, worsening leakage or new bowel symptoms should be recorded and discussed with the treating clinician.
What the Australian evidence means in plain language
The reported rates come from different evidence sets, so they should not be added together or treated as a personal forecast. Broadly, ongoing pain affects roughly one in five patients in the urinary evidence, and nearly one in six undergo a lead procedure in that dataset. That makes these two important intervention points, while the pooled trial evidence reinforces the need to monitor lead position and treatment benefit.
For NDIS participants, aged care clients and families planning long-term continence support, the practical message is straightforward. Sacral nerve stimulation can involve discomfort, altered sensations or changes in benefit, and some patients need revision surgery. A careful review can distinguish an adjustment issue from a complication and help the team decide whether observation, reprogramming or a procedure is appropriate.
Side Effects During the Trial Phase Versus Long-Term Use
The trial phase and permanent implant answer different clinical questions. During percutaneous nerve evaluation (PNE), a temporary lead connects to equipment outside the body. The team is checking whether stimulation improves continence and whether the patient tolerates the sensations. With chronic therapy, the lead and generator must remain comfortable and functional during movement, sitting, transfers and daily care.
Australian MSAC evidence on faecal incontinence reported lead or electrode migration and displacement as the most common adverse event during PNE, at 10.43%. During chronic stimulation, re-operations were the most common adverse event, at 15.50%, with a number needed to harm of 6, per the MSAC faecal incontinence assessment.
| Side Effect | Trial Phase (PNE) | Long-Term (Permanent Implant) |
|---|---|---|
| Lead or electrode movement | Migration or displacement can affect the trial result. | Movement may reduce benefit or create a different stimulation pattern, sometimes requiring revision. |
| Local discomfort | The dressing, insertion point and external equipment may feel uncomfortable. | Generator-pocket or lead-site discomfort can persist or appear later. |
| Wound concerns | The temporary insertion site requires observation. | The implanted pocket and lead pathway require attention during recovery and later reviews. |
| Re-operation | Usually relates to the temporary lead or trial process. | May involve lead revision, replacement, generator work or removal. |
| Programming changes | Used to test response and tolerability. | Used to adjust sensations and maintain benefit. |
Trial-phase migration at 10.43% is mainly a technical placement issue. Long-term re-operations at 15.50% can reflect mechanical wear, lead fatigue or a pocket problem that initial positioning cannot prevent. These figures come from different stages and should not be added together or treated as an individual prediction.
A comfortable trial supports proceeding, but it cannot guarantee an uncomplicated permanent implant. The body keeps moving around the lead, and stimulation tolerance or benefit may change. Early tenderness, however, does not automatically predict a lasting problem.
General information about implanted stimulation, including SCS side effects and risks, may help with terminology, but spinal cord stimulation is a different treatment. The continence team should explain the risks of the specific sacral system being considered, particularly when planning long-term support through the NDIS or aged care.
Managing Discomfort and Daily Side Effects
Most day-to-day problems are easier to manage when the patient and care team identify the pattern early. Keep a simple record of the symptom, its location, what the patient was doing, the stimulation setting and whether continence symptoms changed at the same time.
A practical home routine
- Use the programmer only as instructed. If tingling or zapping is uncomfortable, follow the settings plan provided by the treating clinician. Don't make repeated large changes or ask a support worker to reprogramme the device without authorisation.
- Change pressure points. A cushion, altered sitting position or a different sleep posture may reduce pressure over the generator pocket. Avoid repeatedly pressing or massaging the implant site.
- Protect the skin. Keep the wound and surrounding skin clean and dry according to the surgical instructions. Look for increasing redness, warmth, drainage, broken skin or swelling.
- Plan assistance. An NDIS support worker or aged care carer can help the patient access the programmer, read settings, record symptoms and communicate changes to the clinical team. The patient should remain involved in decisions wherever possible.
- Use pain relief carefully. A pharmacist, GP or treating clinician can advise whether an over-the-counter option is suitable, particularly when the patient has kidney disease, stomach ulcers, anticoagulant treatment, allergies or multiple medicines.
A symptom diary can reveal a useful distinction. If discomfort appears only at one stimulation level and settles when the clinician adjusts the programme, the issue may be stimulation tolerance. If pain follows a fall, develops with swelling or accompanies a sudden loss of continence benefit, the patient needs a clinical assessment.
Don't treat persistent implant pain as something the person simply has to live with.
Device Complications and Revision Surgery
Revision surgery should be discussed before implantation, not only after a problem develops. Australian MSAC urinary evidence recorded 241 of 1,444 patients, or 16.69%, required lead revision or replacement. In pooled study data, about one in three permanent implant patients required further surgery, while 9% ultimately needed device removal, according to the MSAC urinary assessment. These figures do not predict one person's outcome, but they support a practical conversation about possible revision, recovery and future continence planning.
A revision does not automatically mean removing the whole system. Depending on examination findings and device testing, the surgeon may reposition a displaced lead, replace a damaged lead, correct a connection problem or address the pulse generator. The procedure is chosen according to where the fault lies and what is causing the symptoms.
What can lead to another operation
- Lead displacement: The lead may move from the position that provides reliable stimulation. The patient may notice reduced continence benefit or a changed sensation.
- Lead damage: A fracture or insulation problem can interrupt electrical delivery and may require lead replacement.
- Generator-pocket pain: Ongoing pressure or pain around the implant can lead to assessment and, in selected cases, surgical correction.
- Infection: An infection involving the implanted device can become serious. Antibiotics may be suitable in some circumstances, while an established device infection may require removal of part or all of the system.
- Generator replacement: The pulse generator may eventually require planned maintenance or replacement, depending on the system, settings and clinical advice.
Recovery and disruption depend on the operation. Lead revision involves different aftercare from complete explantation, and a planned generator procedure differs from urgent surgery for infection. Patients should ask how continence treatment will be managed while the device is switched off or healing occurs.
For an NDIS participant, preparation may include transport, wound support, personal care, time away from usual activities and communication among the surgeon, continence clinician, support coordinator and provider. Aged care residents may need temporary changes to transfer assistance, pressure care, medication observation or toileting support.
The infographic contains percentages that are not included in the verified Australian evidence supplied here, so it should not be used to calculate an individual's risk. The MSAC assessment provides the appropriate Australian reference for discussing revision and device removal.
When to Contact Your Clinician
Tenderness around the wound or generator pocket is common after implantation. It should gradually improve according to the surgical team's instructions. Contact the treating service if pain worsens, limits movement or does not settle as expected.
An NDIS support worker may notice a participant protecting the implant site during transfers. Record when this began, changes in the skin, stimulation sensations and continence control. If the person is otherwise well, the team may arrange a clinical review. Increasing swelling, drainage, fever or marked redness needs prompt medical advice.
Symptoms that need prompt attention
- Sudden loss of therapeutic benefit: Contact the continence or implant team, especially with a new pulling sensation, jolting or altered stimulation. The MSAC assessment indicates that further surgery can be needed for some patients, so an unexpected change should be assessed rather than managed by changing settings alone.
- Wound or pocket changes: Seek prompt advice for increasing redness, warmth, swelling, drainage, wound separation or significant tenderness.
- New neurological or radiating sensations: New shooting pain down the leg should prompt assessment of the stimulation pattern and lead position.
- Unexpected bladder or bowel changes: New retention, rapidly worsening leakage or a marked change in bowel control should not be dismissed as ordinary adjustment.
- Possible urgent illness: Severe pain, fever, rapidly spreading redness, significant swelling or feeling acutely unwell requires same-day medical attention.
Families can use the MSAC evidence discussed earlier when planning support. Knowing that approximately one in three patients may need further surgery helps families arrange transport, wound care, personal assistance and communication between the implant team, support coordinator, provider and aged care staff before a complication occurs. The reported 9% device-removal rate also supports clear planning for temporary changes to continence care if treatment is interrupted.
Bring the patient programmer when requested. A diary of settings, symptoms, continence episodes, activity and wound changes can provide a clearer account than memory alone.
For carers: Never switch off or reprogramme the system instead of seeking medical assessment for wound changes, sudden loss of benefit or severe new pain.
Making Informed Decisions About Your Continence Care
Sacral nerve stimulation involves a balance. It may offer valuable control when other continence approaches haven't provided enough relief, but it also carries the practical burden of an implanted device. Australian MSAC evidence shows that adverse events can include pain, lead complications, further surgery and device removal, so informed consent should cover both the possible benefit and the maintenance pathway. (Australian MSAC assessment)
A structured continence assessment helps personalise that discussion. A continence nurse specialist or urologist can consider the person's diagnosis, previous treatments, anatomy, mobility, skin integrity, cognition, ability to use a programmer, support arrangements and goals for bladder or bowel control.
Take written questions to the appointment:
- What symptoms is this treatment intended to improve?
- What problems should prompt a call, and who should we contact after hours?
- What follow-up, programming and wound support will be needed?
- What happens if the device stops helping?
- Is the proposed system suitable for the patient's MRI and other medical needs?
- How would revision, replacement or removal affect daily support?
People living with urinary symptoms may also benefit from separate practical guidance about bedwetting in adults, especially while treatment decisions are being made. Sacral nerve stimulation isn't the only part of a continence plan, and protective products, toileting routines, skin care and carer support may remain important.
Informed consent isn't a one-time signature. Patients can ask for more explanation, seek another opinion, review settings and discuss whether continuing treatment still matches their goals.
Nursing Assessment Australia provides continence assessments for NDIS participants and aged care clients, helping families and support teams understand symptoms, care needs and appropriate questions for specialist review. Visit Nursing Assessment Australia to arrange guidance that connects sacral nerve stimulation concerns with a practical, individualised continence care plan.