Information Sheet for Patients of Dr. Reynaud Bollens

Patient’s pudendal neuralgia information (2.0).
Symptoms: pain
            Symptoms can be very variable and probably you will recognise just a part of yours in the following description. This variation is related with the localisation of the problem but also with the mechanism of the problem (compression or traction on the nerve).
The symptoms are often increased in the seated position and became worse during the daytime. It’s common to have a decreasing of the symptoms during the night and on seated position on the toilet (the perineum is pending in the toilet and decompress the nerve).If you have night symptoms, you have to exclude a central nervous problem as a compression of the medulla in the vertebral column.  Usually when the patient must be seated, he prefers a hard chair instead of a smooth cushion (push up the perineum and compress the nerve). The opposite suggests a potential cluneal nerve problem instead of a pudendal nerve problem. The patient uses a chair with the posterior part of the bottom on the edge of the seat or laterally with only one half of the bottom on the chair to minimize the symptoms. The symptoms will be increased after sexual intercourse with a delay of 24-48 hours. Women describes worse symptoms when they have sexual intercourse associated with an orgasm.
The pain is classically reported by the patients but can be absent or not major. We think that the pain is a late symptom in this disease and many patients present mainly “functional” problems. The pain appears somewhere in the pudendal nerve territory: from the coccyx to the pubic bone, including the anal, vaginal or scrotal, penile and clitoral areas. It can be also located in a testis and be more extended on the anterior or posterior tight. Some patient describes a pseudo sciatalgia who start from the bottom (and not from the back) and descends, following the sciatic nerve route, to the foot. These “strange” pain locations are related with the compression of other nerves close to the pudendal nerve.
Functional symptoms:
Anorectal:
            – Impression of foreign body in the rectum
            – Sensation to need to go to the toilet few times per day
            – Obstipation
Vaginal:
        Impression of foreign body in the vagina
        Superficial pain in the vagina (“Vestibulitis”) when you just touch the mucosa
        Pain during sexual intercourse
Sexual:
        Decreasing of the orgasm quality (Women/Men)
        Burning during ejaculation
        Erectile dysfunction (mainly due to the pudendal artery compression associated)
        Premature ejaculation
        Impression of spontaneous sexual stimulation (Women,Arousal syndrome)
Urinary: Can be absent during the night. Frequently diagnosed as “sterile
                 cystitis” or “chronical prostatitis” or “bladder instability”
            – Burning during pee
            – Sensation to need frequently to the toilet with urgencies
– Reducing of the stream of urine (impression “to pee trough a 
   macaroni” during crisis)
Origins of the pudendal neuralgia:
            It’s not only one problem who create the pudendal neuralgia but an addition of different events. Each of them, separately, doesn’t create the symptoms but when enough risk factors appear in the same time, the patient become symptomatic.
Pelvis and vertebral disorder:
            The unbalanced pelvis is a frequent problem observed in this patient’s group. It can be related with one leg shorter. A congenital (existing from the birth) shorter leg is a rare condition (1/1000 people). It’s more frequently acquired after trauma or orthopaedic surgery. In majority of cases, the patient doesn’t have a real leg shorter but a bad position of the knees (40 to 70% of the adults). When we are right handler, we have the tendency to flex lightly the right knee in stand-up position. We create a “false” shorter leg but the effect on the pelvis is the same as in case of real shorter leg. The shorter leg creates an unbalanced pelvis (anterior rotation). To maintain this abnormal position, we contract continuously different muscles (myofascial syndrome) and create potential chronicle pains (knee, bottom, lower back, cervical with headache, …). This problem of bad pelvis positioning explains why we observe more frequently a right pudendal nerve entrapment because the right handler is the most frequent in the population.
External factors:
            The sport activities are also significant risk factor. All sports using a saddle can compress the nerve (bicycle, motorbike, horse-ridding, …). Some sports can stretch the nerve in case of leg-split (Karate, Classic dance, …). All sports with bottom bodybuilding (squat in the cross-fit, pool dance, squash, badminton, …) increase the conflict between the pyramidal muscle and the pudendal nerve.
            The healed-shoes must be also avoided. They create an anterior pelvis rotation with a potential conflict between the pyramidal muscle and the pudendal nerve.
            Some professional activities are more at risk to develop the symptoms: this pathology is a disease of seated patients (taxi or truck drivers, teachers, data processor, bicycle professional, …)
Local problems:
            When we release the pudendal nerve, we can observe many different potential origins for pudendal neuralgia. In case of previous surgery, the tissue can be inflamed and infiltrated by oedema (water in the tissue). Frequently we observe fibrosis of the sacro-sciatic ligament but we found also fatty hernias under the sacro-sciatic ligament or through the pelvic diaphragm. In other cases, we found dilated veins in the pelvis including pudendal vein along the nerve. Radiotherapy create a complete fibrosis of the tissue associated with potential pudendal neuralgia
Trigger Factor:
            The symptoms can occur progressively but, sometime, they appear after one event as urinary infection, intense sport activity, delivery, trauma, surgery, … When the symptoms appear after surgery the problem is related with the gynaecological position used during the surgery. This position can probably decompensate a sub-clinical situation.
Diagnosis:
            The description and the systematic research of all the symptoms are usually suggestive of pudendal neuralgia. In some case the patient has only one or two symptoms. The localisation of the pain on the perineum or the pseudo sciatalgia can suspects the side mostly symptomatic.
            The clinical exam is simple: we research a pain or a discomfort on the palpation of the perineum, on the contact with the mucosa and on the deep palpation of the muscle of the bottom. The deep digital rectal or vaginal palpation at 3 and 9 o’clock put under tension the arcus tendineus of the levatori ani muscle. This palpation is usually more uncomfortable or painful on the sick’s side. We can also feel a contracture of the muscle. The sciatic spine (postero laterally from the rectum) can be also painful.
            Complementary exams as neurophysiological exams, MRI imaging can give arguments in favour of the diagnosis but can’t exclude the diagnosis. The echo Dopler of the pudendal arteries seems to be the more specific exam to confirm a compression but not a stretching on the nerve.
            Nerve block is usually not a definitive treatment but it gives more transitory comfort and, more important, can confirm the diagnosis. It should be done under Ct scan guided control ( 80% of accuracy) instead of under ultrasonography (30 % of accuracy). Classically the radiologist injects a mixture of contrast (to localise the injection’s site), a local anaesthetic agent (to avoid pain due to the increasing pressure on the nerve) and corticoid agent (to reduce the inflammation along the nerve). The patient must observe the symptoms during the hours, the days and the weeks following the infiltration. A short answer (few hours, max 1 day) is usually just the effect of the local anaesthesia and the test is significant. In case of local anaesthesia with I high volume in another place (dental anaesthesia) you can observe also an improvement of the symptoms for a day (general effect). In the first week after the infiltration the pain can become worse than before when the nerve is recovering. This worsening period is specific of a pudendal neuralgia (increasing of the compression by injection of additional liquid in a small space). After few weeks, the symptoms go better and we can hope a maintaining of the result for few months (max 6 months) in more or less 15% of the case when the origin is inflammatory. When the patient presents few months of improvement, the diagnosis is established and the prognosis in case of surgery is better. A negative answer can’t exclude at 100% the diagnosis of pudendal neuralgia (technical problem during the procedure, severe compression, …) but the prognosis in case of surgery is more reserved.
Treatment
The control of the pain is a major issue because, with the time, a chronicle acute pain finished to be memorized in the brain and will stay definitively independently of the resolution of the origin of the pain.
The pudendal neuralgia stays a functional problem. The treatment and the complementary exams should be the choice of the patient only and not the decision of the doctors who want, sometime, categorize the patient to decide for them the best treatment. For us, the goal is to provide a correct quality of life for the patient. The definition of “good quality of life“ is evaluated by the patient himself.
When the symptoms are out of control or when the patient doesn’t have a relapse of the symptoms during the night, the nerve is probably in continuous stress and doesn’t have any period of recovery. This situation became urgent because the risk of irreversible nerve lesion is significant and we recommend more aggressiveness in the treatment.
The urinary symptoms can also evolute to an interstitial cystitis. This evolution is potentially irreversible and needs sometime a bladder augmentation.
Conservative treatment:
            The first part of the treatment is to remove from the environment all the risk factors when it’s possible. Some patients are addicted to their sport activity but they should change the sport activity if it’s a risk factor.
The professional environment must be organised. If the patient is seated for long period, he must try to stand-up and walk each hour. He must use also a specific cushion when he is seated more than one hour.
A perineum free cushion is usually proposed to decrease the pressure on the nerve. In our experience, 30% of the users develop new pain due to the increased point of pressure, particularly on the coccyx or the cluneal nerve. We prefer a thin cushion for paraplegic wheelchair (R/Balanced Seat Honeycomb Technology). This cushion gives a homogenous pressure in seated position and is also enough stable to be used in a car.
A control of the feet with a chiropodist is fundamental. He must analysis the pressure under the feet in stand-up position and the feet positioning when the patient walks on a sidewalk. He will define also the position of the centre of gravity.
Postural physiotherapy is recommended associated with the insole.
The effect of the conservative treatment must be evaluated after 6 to 8 weeks. 10 to 15% of cases are cured and 2/3 of the patients are improved with this approach. The conservative treatment is also important in case of pudendal nerve surgical release to minimize the risk of recurrence.
Postural Physiotherapy:
            The classical physiotherapy includes stretching and massage to relax the contracted muscles. If the origin of the contraction is not corrected (by insole and postural physiotherapy), the relief of the pain stays just few days
Infiltration:
            When the infiltration is efficient, it gives more comfort for few months but the symptomatology recurrence is very high when the external risk factor are neglected. We can consider a second infiltration but we propose 3 infiltrations maximum because the corticosteroid can potentially induce a definitive nerve atrophy. Technically, the result is better when it’s done under Ct-scanner instead of under ultrasonography.
 
Heating / cooling:
            Local application of warm or cool on the perineum disturbs the pain transmission in the nerve and helps transitory in some patient.
 
Drugs:
If the symptoms occur in an acute manner we can consider high dose corticoid to hope to stop the crisis as an immediate early treatment.
On chronical pain, the paracetamol is usually poorly efficient.
We can start with anti-inflammatory drugs as first line.
If necessary tramadol is used alone or in association. We can give stronger morphine drugs but it’s important to remember that this category increases the sensitivity of the pain receptors.
Anti-epileptic or anti-depressive drugs are considered as the classical treatment for neuralgia. Unfortunately, many patients report side effects incompatible with normal professional or social live.
Some patient report improvement of the pain when they take Tadalafil 5 mg daily. The exact mechanism is unknown but the improvement of the arterial flow in the pudendal artery is probably associated with a better oxygenation of the nerve itself.
Subcutaneous injection of high volume of local anaesthesia (10 ml of xylocaine 2%) around the ischiatic tuberosity is sometime efficient to control the pain for few weeks. The effect is maybe more a systemic effect (general distribution in all the body) than a real local effect.
As for other neuralgia, when the pain is intolerable, a short general anaesthesia controls the pain for few weeks to avoid the risk of suicide.
Laparoscopic pudendal nerve release:
            The advantage of the laparoscopic approach is the limited invasiveness. 4 or 5 small incisions (5 to 10 mm long) are needed. The abdomen is inflated with CO2 gas and an optic is introduced trough the umbilicus. Small 5 mm instruments are used to release the pudendal nerve. The surgery has for goal to release all the length of the nerve (from the sciatic nerve roots to the Alcock’s canal).
            At 6 months after the surgery 85% of the patients evaluate the improvement around 80 %. The last symptoms need until 2 years to disappeared. Unfortunately, 15% of the patient will not feel any improvement. A significant percentage of patients will stay with light symptoms, particularly when they are tired or stressed. The prognosis is dependent of the duration and the intensity of the symptoms. Longer is the story, more intense are the symptoms and more the risk of failure is high. The younger patients seems also to have a better recovery rate.
            The symptoms disappear classically during the first post-operative week due to the general anaesthesia effect’s. The symptom’s will reappear progressively during the first month to became frequently worsts than before the surgery. Some new symptoms can also appear during that period. In case of erectile dysfunction, the improvement is significant early during the first two months. The faster improvement is related probably to the vascular origin of this symptom (compression of the pudendal artery with the pudendal nerve). After the first month, the clinic goes progressively better. The patients observe period of remission of few days followed by days of worse symptoms. With the time, the crisis became less frequent and the intensity of each crisis decreases.
            The patient can present partial sciatic or obturatory nerve palsy. These symptoms can stay for few months but recover normally.
            15% of the patients will need a contralateral surgery in the months or years following the first surgery.
In the published literature, few patients have been reported worse than before the surgery. If this situation seems rare, it must be consider possible.
To minimize the risk of recurrence reported in the literature (50% of patient in some series), it’s very important to stay careful all the life. The control of the risk factors must be maintained under control after the surgery.
Discussion:
            The symptoms of the pudendal nerve entrapment are highly variable. The pain is a common symptom but can be sometime absent. The functional (urinary, sexual, anal) problems are frequently associated. For us the pain is maybe a late symptom in this syndrome.
The pudendal nerve entrapment is a functional pathology. For us, the patient must choose the treatment (and the sequences of them) and the exams they want to do.
The conservative measures and the surgery are the only possibilities for a curative treatment. The other approaches can just mask the symptoms. It’s important to remember that the prognosis after the surgery is dependent of the duration of the symptoms. An early decompression of the nerve gives a better prognosis. The laparoscopic approach is a minimally invasive technique and can be propose early in the treatment (“we can try and we will see”).

Video Available on Youtube from Dr Fabienne Absil (Type: “Nevralgie pudendale traitement”) or On the YouTube channel of Dr Renaud Bollens

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