Health Organization for Pudendal Education

Summer wrote: ↑Wed Nov 15, 2023 5:57 pm Hello everyone,

Sorry for my late reply !

For April :

Yes, I saw a specialist in physical or neurological pain or neuralgia in Paris on November 13.
She knows about Pgad syndrome.
However, in my case, she prescribed vitamin B12 in ampoules. A specific drug for sensations in nerve fibers (nerves).
So, the cause of my pgad would be peripheral neuropathy !
Either it's a genetic cause or because of my previous Lyme disease, where the Western Blot all diag mikrogen serological tests had found 2 co-infections = Garinii bacteria and Afzelli, which attacks the nerves and causes peripheral neuropathy !
Some people experience neurological pain or, as in my case, strange sensations.
The 3 specialists don't know if it's due to Lyme and the evolution of this disease? or a "natural" neurological disease (polyneuropathy) ?

Answer for Balenul

According to my pelvic and dorsal spine MRIs, I don't have a tarlov cyst that irritates or pinches the great pudendal nerve.
No cyst, as is often the case, on the nerve roots of the 3 sacro-lumbar S1 S2 S3 and no cyst on the pudendal nerve, perineal, genital sector !

When the cause of a PGAD is a Tarlov cyst on the pudendal nerve or dorsal nerve of the clitoris or penis, the solution is simpler !

The neurosurgeon has to remove the cyst, or sometimes Protrusion or herniation of the disc , especially in the sacro-lumbar region from S1 to S3, where the Pudendal nerve begins and which then leads to the genitals and other organs.
It's a surgical procedure that's often easy to perform.
I just have a small disc protrusion at the L5-S1 sacro-lumbar vertebra, but no pain.
Is this protrusion also one of the causes ? No, because a priori it's polyneuropathy.

Sometimes the cause of a PGAD is genital varicose veins, even in young people ! I don't have any.

Yesterday, Tuesday I started taking vitamin B12 and Duloxcetine 30 mg.
The pain specialist would like me to try acupuncture at a later date.

The worry for me, is that if it is peripheral neuropathy that triggered my PGAD, there is no surgical solution No chance

If I've forgotten to answer any of your questions, please don't hesitate to let me know

Thank you for your understanding and kindness

L5 s1 annular tears , potrusions rarelly can give Pgad even with no pain.Are 2 places l5 s1 and l4 l5 , i have tears in both.This is the San Diego group researche led by dr Goldstein.search more info on internet

directorguy wrote: ↑Sun Jul 30, 2023 2:26 am

Amarant wrote: ↑Sun Jul 04, 2021 8:15 pm Hello, I'm new to this forum and wanted to share my story. No doctor could help me so far. I am male and 34 years old.
..
I read a lot of men who have problem maintaining an erection or have pain. For me it is the opposite.
Are here any men who can relate this? I'm really desperate, because I think it wont go away anymore and I don't know what to do. I hate it so much!!!!

Hi Amarant - I'm male, 47 years old. My problem is related closely to yours, but is slightly different.
For me, the sexual arousal is not an erection, it's a nerve somewhere deep inside my perineum that causes the persistant (and highly irritable) sensation that I need to ejaculate.
The sensation is heightened during my drowsy period before sleep and is so irritable, won't allow me to fall asleep - I just lie there awake for hours begging it to leave me.
If I give in and then masturbate to ejaculation, I immediately have what I call a 'magic 30-minute window' of relief whereby if I'm lucky, I will fall asleep before the time's up.
If I don't fall asleep within that 30-minute window, the sensation returns and intensifies until I have to go a round 2 (or just put up with it until I fall asleep around 6 or 7am).

The sensation isn't just there at a pre-sleep stage, it's always there - I can even feel it within me now, it's just not affecting me as deeply as the point where I need to sleep.
Personally, I don't believe this is pudendal neuralgia - Because if I'm right (and please correct me if I'm not), for PN there needs to be pain. I'm not feeling any pain, just a terribly annoying sensation that won't go away.

I've never had any operation and am otherwise very healthy in body and mind. What I am learning is that it's a very rare condition - Whether that is because nobody talks about it (as it's embarassing), then maybe it could be more common than we think. Like you, I do experience erections that won't go away sometimes - But I wanted to stress that this isn't always the case, the main issue for me is that stupidly annoying sensation in my perineum. Please re-evaluate your condition and think about what the real issue is (for me, I can put up with erections - it's that sensation that's the issue).

There is an interesting medical journal article from 2013 here:
https://www.bjmp.org/content/persistent ... ysis-cause

Also a male, but they appear to give some weight to a vasectomy he had as being a potential psychosomatic cause. For me, like you, I'm still looking for answers.
I'm just not sure if PN is barking up the wrong tree yet.

My sensations are like you....rarelly have erections and most of the time i ejaculate with no erection also.Not sure if your problem is in pelvic floor , pgad has many reasons.Is a big Pgad hidden group about Pgad on fb.message me in private all who want acces.nice group with many infos and active and empathic people.

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I responded in private.dorsal spine mri is not relared to pgad from what i know and lumbar and sacral part.i have lumbar and sacral mri , i have pelvic mri.all 3 tesla.i have pudendal emg.The best urologisi in Spain is a friend of mine.I saw Hibner in Poland , he has a clinic there.....And like i said in private in Romania i saw all doctors in start and are useless.Only now is a pain clinic with dictors from usa and france.Romanians trained there....i know them all and ww work together to know more about Pgad...Hibner told me i should talk to doctors about pgad and pelvic problems in a conference Sadly all you told me i did....and i saw 40 doctors in romania , spain , poland etc.I also know Goldstein and he is considered the biggest expeet in Pgad.Search his name.Don t want to brag but i suffered so much that i know more tham 90 % of doctors about pelvic problems.Sadly i am not a begginer , Violet knows my struggle and my problems good for a long time.In France in Nantes i don t think they can do a test i did not do or teach me more than i already know Summer, i would like to talk with Amarenco in Paris , not others.Or another exceptional neurourologist .In Romania we have 1 and he is bad Summer.....i read all studies possible on internet , i am a member of a hidden Pgad fb group with a lot of infos and they wanted to propose me to be a moderator...sadly i onow to much but is in vain.Somedays i feel ok but others horrible....i want to do transcranial stimulation and fix my annular tears.

Ps : i also talked alot in emails with Barry Komisariuk.he is a 83 yeara old doctor that studied Pgad all his life.

All this knowledge , testa etc and i am still not fine.I spent 30k euros in my journey already , i feel like i did a second university ( meducine )...all was going good until april when i stopped Zoloft and in 3 weeks .Pgad started.My horrible urinary symptoms where much better....gabapentin helped alot on them.

My life changed 3 yeaes ago when in 1 night my pituitary gland exploded....i barelly survived.I take many hormons , i have duabet insipudus ( with no medicine i pee 12 liters per day )....my autonomic system got injured also by surgert..

Autonomic system imo also has something to do with Pgad , urinary symptoms.Most Pgad sufferes no matter the reason also have urinary problems.Imo pgad most of the time is multifactorial.

I hope i explained abit betrer know . Today my pgad is huge but i must fight for my wife , mother etc....

Summer wrote: ↑Mon Jan 15, 2024 9:34 am Hello Balenul,

In any case, it is always necessary to start with a clinical study of the patient = ask questions to the patient and according to his answers, make him undergo medical examinations = MRI images or others and if the Pgad is of psychological cause, to see with a good therapist and to make for example sessions of Emdr or Hypnoses.

There are urologists and neurologists in Romania! And the possibility of having an MRI or Pelvic/Perineal or Dorsal Spine Doppler Ultrasound

Which examination found your nerve problem in the perineum ?

Either it's peripheral neuropathy at the level of the pudendal nerve and that irritates it and triggers your Pgad or because of a Tarlov cyst that irritates or compresses part of the pudendal nerve at the level of the genital Perineal sphere = pgad

If it's not possible to have a pelvic mri or perineal Doppler ultrasound, go and look closer to Romania: Germany or France ?

Don't listen too much to certain people or read certain articles on the Internet !
Why did you travel so far from your home in the USA, to see this so-called specialist doctor who, according to you doesn't know much about Pgad syndrome ! And unfortunately for a not very good result It's a real shame...

As for drug treatments for sensations or neuropathic pain = affected nerves, personally they calm my problem a little, but they don't stop it.

I tried not taking the medication for 2 days, for example, and the Pgad came back
Furthermore, taking medication (=chemistry) over several weeks or months is not very good for the body = side effects and sometimes undesirable !

I'm going to contact the neurosurgeon in Paris by teleconsultation!
Because she told me in September that if things didn't go well with the treatment prescribed by the neurological pain specialist, I should go back and see her

In any case, I think it's going to be complicated for me!

( In France strangely enough... there are more and more Romanian or Syrian doctors or specialists etc... Who come to work in France!...)

Try Amarenco Summer.and always feel free to message me.

Hi Balenul,

That is very disappointing that the Botox and pudendal nerve blocks didn't help. Did you even have any temporary relief from the pudendal nerve or dorsal nerve blocks? I saw that you said it's not your pudendal nerve that is the problem. I guess that would be the conclusion if the blocks didn't even give you any temporary relief.

You have been through a lot. I didn't know about your diabetes insipidus. That is a very difficult problem to deal with, especially when you have PGAD with it. I am very sad for you. You are an amazing person to keep fighting for your wife and mom.

Violet

Ty Violet.i have many problems , that surgery made me another person sadly.i think my pgad right know is more related to brain Viiolet and my urethra hipersensibility.my urinary symptoms are much better , 2 years ago they kinda make me think about suicide.....now they are decent.i think and hope pgad will get better also.diabet insipidus is controlled with nasal spray but in start 100 % damaged my urinay sistem.i think i must adress my central sensitisation and ocd for pgad and maybe find some meds thar can help since Zoloft stopping started it.i have faith but is not easy , i am only 38 and i am sick of all of this.....pudendal is ok , pelvic floor is getting better.About your qurstion , both blocks did nothing sadly.i have burning alot with pgad in urethra so i guess is also some neuropathic pain but i think is a sensitization mostly atm...

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