Pudendal neuralgia from 12 years

[Gabriel81]

Hi, I'm 35 and live in Siracusa - Italy -
I have chronic pelvic pain also classified as "pudendal nerve neuralgia" in 2010.

The primary symptoms appeared 12 years ago are burning with urination/ejaculation, orgasm absent heavy sexual-affective disorders and depression.
After 6 years from onset was added chronic contraction of the pelvic floor.
I never managed to have improvements with various therapies, I quote the significant therapeutic moments:


- 2004-2005 Several Urologists in Catania: prostatitis diagnosis. Various generic antibiotic treatments and herbal products with Serenoa repens.

- 2006 prof. Guercini (urologist) - Rome: pelvic-prostatic syndrome diagnosis.
Rivotril drops + muscle relaxants, Antrolin rectal cream (lidocaine), thermal therapy with Dilatan Cones heated to anal application.

- In 2010 prof Guercini (urologist) - Rome: Physiotherapy 10 days of endo-rectal massages direct to trigger points and homemade continuation with prostate massager (interrupted for worsening symptoms)

- 2011 Dr. Giraudo (physioterapist) - Milano: External Physiotherapy on the pelvic floor interrupted by the physiotherapist who indicated a "irritating thorn" that make ineffective the treatment.

- 2011-2015 dott.Cappellano (urologist) - Milano: Diagnosis of neuralgia / neuropathy of the pudendal nerve without Alcock canal entrapment (excluded from neurophysiological tests),
Oral drugs: Laroxyl, Lyrica, Biodinoral, Dibase for 6 month and then Lyrica (up to 200mg/die), Cymbalta (up do 60mg/die) and Sirdalud (up to 4mg/die) for 3 years.
Drugs through EMG-NFS guided infiltration: coctail drugs with anesthetics + heparin (about 5 attempts) - No temporary remission
Drugs through EMG-NFS guided infiltration: Botox (two attempts) - No temporary remission
Sacral elettrode modulator Implant (PNE): two different operations performed at different times (one in peripheral position and the other more central). Explanted after failure of the respective test phases (high and low frequency).

-2016 Dr. Malaguti (neurologist) and dr. Lamarche (osteopath) - Milano: Diagnosis of neuralgia / neuropathy of the pudendal nerve without entrapment confermed by another neurophysiological tests.
Multidisciplinary therapy approach based on osteopathic manipulations (occasionally I suffer from low back pain with a L5-S1 protrusion, "kyphoscoliosis" and lower limbs dysmetria), diet improvements (for irritable bowel syndrome control that occasionally occurs), pelvic floor rehabilitation exercises.


Now I will start a course of treatment with biofeedback, electrical stimulation and physical therapy but are pessimistic.

One thing I wanted to ask is whether my symptoms can have a relationship with the L5-S1 disc protrusion.
In an old article of dr. De Bisshop was talk of the possibility of an intraspinal compression / irritation of the pudendal nerve:
http://www.perineology.com/files/e2b.htm


Thanks for the attention

[Violet M]

Welcome to the forum, Gabriel. I'm sorry you have had pain for so long without relief.

Drugs through EMG-NFS guided infiltration: coctail drugs with anesthetics + heparin (about 5 attempts) - No temporary remission...

One thing I wanted to ask is whether my symptoms can have a relationship with the L5-S1 disc protrusion.
In an old article of dr. De Bisshop was talk of the possibility of an intraspinal compression / irritation of the pudendal nerve:
http://www.perineology.com/files/e2b.htm

What nerve did the guided infiltrations target? Was it a pudendal nerve block? If I understand correctly, you did not have even a few hours of pain relief. If it was the pudendal nerve you should have had at least some temporary relief if the nerve blocks were performed correctly. Did you have numbness and loss of sensation in the pudendal nerve distribution area after the nerve block, confirming that the medication blocked the pudendal nerve? If you had numbness and loss of sensation in the correct area but no pain relief then the diagnosis of pudendal neuralgia is not confirmed.

Have you tried a nerve block at the L5-S1 nerve roots with any temporary remission in pain? (I would not want them to use steroids in this type of block due to the risk of arachnoiditis.) Usually the pudendal nerve comes off S2,3,4 but there can be some variations in anatomy and it sounds like Dr. de Bisshop believes an impingement at L5-S1 could cause pudendal neuralgia.

Do you have any idea what caused the start of your symptoms -- like an accident or injury, etc.? You might want to read Ezer and Nonsequitur's posts on the forum if you think there is any chance your symptoms are related to stress or anxiety.

Violet

[Gabriel81]

What nerve did the guided infiltrations target? Was it a pudendal nerve block? If I understand correctly, you did not have even a few hours of pain relief. If it was the pudendal nerve you should have had at least some temporary relief if the nerve blocks were performed correctly. Did you have numbness and loss of sensation in the pudendal nerve distribution area after the nerve block, confirming that the medication blocked the pudendal nerve? If you had numbness and loss of sensation in the correct area but no pain relief then the diagnosis of pudendal neuralgia is not confirmed.

Yes, was a pudendal nerve block. I had numbness and loss of sensation in the leg and above the corresponding foot. I could not walk for a while.
I must say that at that moment my only symptom was a mild tension/contraction in the pelvic floor. The urethral burning I could not verify it because arise only during the flow of urine or sperm.
The diagnosis of pudendal neuralgia was confirmed by Dr. Malaguti (neurologist) based on neurophysiological observation : ENG, SSR sacral area, CNMG (autonomic perineal muscles test), back ible nerves SEP, pudendal nerve SEP).
Do you think this maybe insufficient for the diagnosis?

Have you tried a nerve block at the L5-S1 nerve roots with any temporary remission in pain? (I would not want them to use steroids in this type of block due to the risk of arachnoiditis.) Usually the pudendal nerve comes off S2,3,4 but there can be some variations in anatomy and it sounds like Dr. de Bisshop believes an impingement at L5-S1 could cause pudendal neuralgia.

No, never tried nerve block at the L5-S1 nerve roots, dr.Cappellano exluded a link.
Dr.ssa Malaguti just assumed an indirect link: postural alteration and nerve strain.
Do you think that my symptoms could justify an investigation in this direction?

Do you have any idea what caused the start of your symptoms -- like an accident or injury, etc.? You might want to read Ezer and Nonsequitur's posts on the forum if you think there is any chance your symptoms are related to stress or anxiety.

No, when it rose up the symptoms I was a little stressed out from university studies but nothing special. It was a period when I masturbate more than usual (even 4-5 times a day for some days). However, it seems excessive to assume that this may have been the cause. It's possible?
I am a bit anxious subject, extremely introverted and various relationship problems since childhood.

[Violet M]

Gabriel, it can be very difficult to distinguish between pudendal neuralgia and spinal radiculopathy. If you had absolutely no relief from the pudendal nerve block it seems unlikely that you have pudendal neuralgia unless they completely missed the nerve on the block. Since you had leg/foot involvment from the nerve block maybe the medication wandered too close to the sciatic nerve and didn't hit the pudendal nerve well enough??? You might find the last question in this interview with Dr. Attaman interesting -- discussing how to know if you have a spinal radiculopathy or pudendal neuralgia. http://www.pudendalhope.info/node/22

According to Dr. Attaman, "Spinal radiculopathy will usually have imaging abnormalities on MRI. Radiculopathy is exceedingly rare in the S2-S5 nerve roots. Typical causes are Tarlov’s cysts, fracture, tumor. S2-S5 radiculopathic pain will be incompletely relieved from image-guided pudendal nerve blocks, but completely relieved from selective nerve root blocks. Sensory abnormalities are more common with sacral nerve root pathology as well."

I don't know if trauma from frequent masturbation can be a cause of pudendal neuralgia in men. I have heard in the news that women who use vibrators frequently can have nerve damage.

Since you feel that anxiety may play a role in your case, it might be a good idea to look at Ezer and Nonsequitur's posts.

Violet

[flyer28]

I also think that if you had no relief with precisely placed pudendal nerve block, then other diagnosis are more probable. I can somehow relate to your condition because my problems started also after prolonged sex with a lot of edging and delaying orgasm. Maybe there is some kind of general pelvic myoneuropathy in play, where of course, pudendal nerve plays a prominent role...
The problem is that is severe CPPS, which is also a neuromuscular condition, the nerve irritatioon and neuropathic pain is becoming dominant, that means that it is still present even after the eradication of trigger points. I had somehow benefit from PT, but never reached complete relief. Dorsal nerve block placed with high resiolution ultrasound did not make any difference either...No Tinel sign in Alcock and dorsal canal..So I went with the way of severe general pelvic myoneuropathy with predominant neuropathic pain.

[Gabriel81]

Gabriel, it can be very difficult to distinguish between pudendal neuralgia and spinal radiculopathy. If you had absolutely no relief from the pudendal nerve block it seems unlikely that you have pudendal neuralgia unless they completely missed the nerve on the block. Since you had leg/foot involvment from the nerve block maybe the medication wandered too close to the sciatic nerve and didn't hit the pudendal nerve well enough??? You might find the last question in this interview with Dr. Attaman interesting -- discussing how to know if you have a spinal radiculopathy or pudendal neuralgia. http://www.pudendalhope.info/node/22

According to Dr. Attaman, "Spinal radiculopathy will usually have imaging abnormalities on MRI. Radiculopathy is exceedingly rare in the S2-S5 nerve roots.

I don't know but it seems unlikely an error. Dr. Cappellano has some experience in EMG blocks guided and we have made several attempts (three blocks plus two infiltration with botox).
The only radiculopathy shown by MRI is one in L5-S1, but according to what was said before and what I've found on the net does not seem to give much credence to a possible relationship with CPPS.

I intend to re-evaluate these aspects with a good specialist but at present to do this I should go abroad and it is not easy for various aspects.

As flyer28 says I believe that also in my case can be defined as "severe general pelvic myoneuropathy with predominant neuropathic pain". This is the idea that I have done.
Moreover, I think that in Italy the term "pudendal neuralgia" is often used in a flexible way and is not closely related to the Alcock canal entrapment but is also used to define a generic suffering nerve.

I have some other questions to ask (sorry if I take this opportunity once more, but the Italian forum is almost dead ):

1) Given the context, what kind of physiotherapy should I do? A colon-proctologist in my area indicated Kegel exercises (contracting and decontract the anus, pushing, associate breathing techniques ...). He found weakness and some muscolar control alteration.
On the other hand the book of dr.Wise "A headache in the pelvis" does not recommend these exercises and suggests treating trigger points and paradoxical relaxation (in my case it seems there aren't triggers according to a recent palpation of the colon-proctologist and in the past there was some tenderness but never real triggers).
Also point out that in 2011, after three sessions of external manual treatments in the perineal area Dr.ssa Giraudo (phisioterapist - Milan - Italy) told me that there was a "irritative thorn" which make ineffective the exclusive muscular approach, then sending me to dr. Cappellano for the pharmacological protocol.

2) I recently contacted a specialist in pain therapy by phone (dr. Raffaeli) and he suggested to try Cannabis (memory I have unsuccessfully tried Rivotril, baclofen, Sirdalud, Elavil, Lyrica, Cymbalta).
What you can say about this approach?

Thanks for the attention

[flyer28]

Hallo Gabriel,
1) regarding PT: PT is not the mere eradication of trigger points, but also stretching, skin rolling massage, massaging the connective tissues etc....I still think that positive effect of PT prevail in almost all cases, maybe with the exception of cases immediately post-operative...
Kegels are big NO for almost every sufferer...I also made a mistake, that in the beginning I tried to include them into my PT regimen, and it slightly worsen my condition. Try the reverse Kegels, drop the pelvis, deep breaths etc.
I also think that PT alone is seldom succesful. There must be some other modalities - cognitive behavioral techniques (progressive relaxation) or other mind-body approaches.
2) I dont have any experiences with cannabis, but there are mixed result on the chronic prostatitis forum. It might help but this is surely not a magic bullet.

[Violet M]

1) Given the context, what kind of physiotherapy should I do? A colon-proctologist in my area indicated Kegel exercises (contracting and decontract the anus, pushing, associate breathing techniques ...). He found weakness and some muscolar control alteration.
On the other hand the book of dr.Wise "A headache in the pelvis" does not recommend these exercises and suggests treating trigger points and paradoxical relaxation (in my case it seems there aren't triggers according to a recent palpation of the colon-proctologist and in the past there was some tenderness but never real triggers).
Also point out that in 2011, after three sessions of external manual treatments in the perineal area Dr.ssa Giraudo (phisioterapist - Milan - Italy) told me that there was a "irritative thorn" which make ineffective the exclusive muscular approach, then sending me to dr. Cappellano for the pharmacological protocol.

It seems like maybe myofascial release via the rectum might not be right for you since you said your symptoms got worse from it once. Myofascial release made me worse too. I think kegals also contributed to worsening of my symptoms. If your pelvic floor is already overly tense with muscles overly contracted, I think kegals would be a mistake because it would cause the pelvic floor muscles to be even more tightly contracted. You say you already tried manual therapy and it did not help. You could try visceral manipulation or you could try restorative exercise using the Katy Bowman method but it would just be a experiment to see if either of these methods helps you. I don't know if there is anyone in your country who uses electroshock wave therapy but that might be something you want to try. Konedog4 on this forum has written many posts on the topic. It helps some people but not others.

2) I recently contacted a specialist in pain therapy by phone (dr. Raffaeli) and he suggested to try Cannabis (memory I have unsuccessfully tried Rivotril, baclofen, Sirdalud, Elavil, Lyrica, Cymbalta).
What you can say about this approach?

You can do a search on the word "cannabis" on the forum but in summary, from my memory of what people have posted, cannabis has not been particularly helpful for people with pudendal neuralgia who have posted on this forum. However, if it is legal in your country it would be worth a try just in case it would work for you.

Violet

[Gabriel81]

Thanks for your answers. I'll update as soon as I have news!

[Gabriel81]

I update my post asking if anyone can help me figure out which specialist in Europe specializes in the diagnosis and treatment of pudendal disorders that do not have the classic "compression to the Alcock's canal" and therefore not treatable by surgery, unless there are some compressions-strains elsewhere in other parts, and this must be assessed.
Here in Italy, in my opinion, the diagnostic and therapeutic indications are too vague in these kind of situations, also specialized phisical therapists are unavailable in my area and I'm getting worse ...

Thank you