PGAD - persistent genital arousal disorder

[Summer]

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[April]

Hi Summer,

Pgad is a pain syndrome, so it makes sense that the doctor would use the word pain. And vibrations, weight sensations, and needle pinches are definitely types of pain, so she should be using that word. I am lucky, because I have not had pgad. All of my pain has been in the other two branches of the nerve. So you had several tests this week. How did that go? Did you learn anything? You say you don't know the cause of this. That is not that unusual. I've seen many posts from people who cannot figure out what triggered it.

Take care,
April

[Balenul]

Hello violette,

I have read and understood your message !

Yes, in my opinion it's very likely that your pudendal nerve was pinched, irritated, by a cyst or a herniated disc in the sacro-lumbar vertebrae, and this happens very often!

Very often it is in the sacro-lumbar vertebrae that there is a pinching (compression) of the pudendal nerve and also in the pelvic/genital/genital area.

Did you have a herniated disc or cyst in the dorsal spine / sacro-lumbar region ?

Is Dr Frédéric Potaux the orthopaedic surgeon and traumatologist in Nantes you're talking about? Yes, there are Pelvic and Pudendal nerve specialists in Nantes !

In France (as in other countries) it's not the lack of neurosurgeons or orthopaedic surgeons that's the problem, but the lack of knowledge about this Pgad syndrome !

The problem is that there are still many neurosurgeons and urologists who don't know that sometimes a cyst or herniated disc affecting the Pudendal nerve can trigger permanent genital arousal !
So it's up to us (the patient) to explain this Pgad syndrome to the doctors! That's what I did right from the start with the various doctors and I wasn't too afraid to tell them about my permanent genital arousal... Anyway, I had no choice !

Technically, it's no problem for a neurosurgeon to free a nerve and remove a herniated or prolapsed disc or Tarlov cyst.

But the good news is that Pgad syndrome is beginning to be better known among doctors and surgeons or urologists. And there's also a lot of information on the internet and social networks.

I hope that the cause of my PGAD is not a neurological disease = polyneuropathy!

I had a pelvic MRI in October 2021 and no Tarlov cyst.
Pelvic/genital varicose veins, I don't know?
I have a small L5-S1 protusion and L4-L5 L5-S1 osteoarthritis. But I'm not sure if that's the cause of my PGAD?
The neurosurgeon, Gaelle Mouton Paradot, thinks it's neuropathy.

I am very happy that you are cured of PGAD.

If I have any new names of neurosurgeons or urologists specialising in the dorsal spine, pelvic and pudendal nerves and who are familiar with Pgad, I will send you the information (their contact details).

See you soon

PS: Thank you and I agree => admin@pudendalhope.org

Hey.I also have Pgad and other pelvic problems , but Pgad started after i stopped Zoloft.Imo the pudendal nerve can t be compressed there 100 % what you talk about is a pelvic roots compression and not a pudendal entrapment.I think Violet and others can confirm this.I know alpt about this and even talked with dr Goldstein from San Diego prolly the doctor with most knowledge overall in Pgad.i am also a dr Hibner patient and will meet him in Poland soon.Imo is a posibility compression on sacral roots that give rise to pudendal can give Pgad but is not often the problem.You need a special block for this.I repeat what you talk about is not a pudendal entrapment / compression.

[Balenul]

France doctors even Nantes one have limited knowledge in Pgad from spine compression...i talked with many France people in Pgad support group.But any good surgeon can decompress your discks that push on roots / ( i repeat roots not never ).Best pudendal surgeon is Hibner but in Nantes and Marseille you can find also good surgeons for this , urologists and Pgad imo is not a big conexion if is no intersticial cistitis or a big urethra hipersensibility.You need those blocks before surgery to know if the Pgad is from your back or not.Also best surgeon in the world for this is in San Diego ( dr Kim ) but other good surgeons can do his surgery also , bu first you need those blocks. I know a france guy with Pgad that saw a spine surgeon with dr Kim study and he had the suegery in France and is better now , not much but better.From what i read spine problems rarely cause Pgad...so many have disk , cysts etc and no Pgad but is a possibility.If you have more questions ask me and i will respond be strong

[Summer]

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[Violet M]

Imo the pudendal nerve can t be compressed there 100 % what you talk about is a pelvic roots compression and not a pudendal entrapment.I think Violet and others can confirm this.

According to the Cleveland Clinic "The pudendal nerve arises from the sacral plexus in the very lowest part of your spine. The sacral plexus is a bundle of nerves located on the back of your pelvis."

https://my.clevelandclinic.org/health/b ... ndal-nerve

I don't know at exactly what point they would call it pudendal nerve entrapment. That would be a good question for Dr. Hibner when you see him, Balenul.

Summer, I hope that duloxetine helps you with the symptoms. Just be careful if you decide to discontinue it, that you wean off of it slowly.

Violet

[Summer]

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[Balenul]

Hello Violette,

I totally agree with the article about the great pudendal nerve! In fact, it's very easy to find photos of the pudendal nerve and the path it takes! This pudendal nerve also has s 3 branches. The Dorsal nerve of the clitoris or penis, the Anal nerve and the Perineal nerve.
Here's a quick summary of the course of this famous pudendal nerve ==>> The pudendal nerve forms on each side from the roots S1 to S4 (especially S2-3), which then leave the spinal cord, then descends into the perineum near the ischium (buttock bone), before ending up in the perineum in 3 branches: dorsal, perineal and rectal And the dorsal nerve of the clitoris.

Sometimes the pudendal nerve is compressed in the ischio-rectal fossa or in the sacrospinous ligament.
Sometimes, when the large sacrospinous ligament is inflamed, it can irritate or compress the pudendal nerve, resulting in pain in the buttock or other areas.

In France, there are women who, because of one or more Tarlov cysts irritating or compressing part of the pudendal nerve, have a Pgad. The same applies to the dorsal nerve of the clitoris!
This is why the best solution is surgery to remove the cyst(s).

Thank you, violette! I hope the treatment will give me some relief

I still have a sore spot in the middle of my left buttock where there's the piriformis muscle and the big sacrospinous ligaments and which is very, very close to the pudendal nerve !

I'm going to discuss this later with neurologist/neurosurgeon gaelle mouton Paradot.
My young neurologist in my town is still on sick leave and maybe she should come back at the end of December and ?

I'm going to ask my family doctor for a prescription to redo an MRI of the pelvis and pelvic area.

To check if there is a cyst or not and mainly to check if there is inflammation at the level of the piriformis muscle and the large sacro-epineous ligaments because I constantly have this muscular sensation (a point) in the left buttock !....

Violette, Yes I hope you're well and that your spirits are high !

Actually it's very complicated neurological problems!

See you soon

You are very informed and all you said is true Summer i hope you will get better.I just said imo a compression so high ofc affect pudendal and can be operated but imo is not a direct compression on the formed nerve and mostly on roots but ofc they can give all pudendal neuralgia / entrapment symptoms( but ofc maybe i am wrong ....Hibner should know more ).Pudendal nerve can give Pgad , dorsal branch also can , Tarlov chists , annular tears also...is not easy.if i remember i will ask Hibner.I hope things will be good for all.Aslo some people with Tarlov have no Pgad Hibner told me.If your case can t be operated i am sure some neuropathic pills can help you .2 years before Pgad cause of my tight pelvic floor that press on pudendal branches i had a non stop feeling to pee in uretha and a constant rectal pressure.A high dose of gabapentin helped me alot but is not helping Pgad .Now i have a general anesthesia again and i lowered meds ...guess what rectal pressure and urinary symptoms are back.I will report my Polish trip.Keep hope...2 years i was thinking i will never have a day with no urinary symptoms and i had many after Gaba .Also pudendal is a motherfucker excuse my word for some his branches rise in other places not exactly like majority ( regarding to Alcock canal ).Summer about back problems and Pgad search Choll Kim articles pls and show them to your surgeon , he talks about blocks and many stuff there....sry if i typed wrong but i am in the car going to airport.

[Balenul]

Summer i have same problems L5 - S1 with no pain...rare very rare even with or no pain they can give Pgad.I

https://academic.oup.com/jsm/article/20 ... ogin=false

Read this Summer and show your surgeon pls.
Also about Pgad a big article :

https://www.sciencedirect.com/science/a ... via%3Dihub

I will talk with Hibner about what you and Violet said .i repeat i hope i don t forget.

Summer i have Pgad , rectal pressure , urinary symptoms .Rectal prolapse surgery with absorbable mesh ( not sure is absorbed in many case she was not absorbed ).Pituitary apoplexy that destroyed me i have diabet insipidus with no treatment i pee 12 liters per day , i take cortizol and eutirox daily or i die.....So i know how you feel and i am near you and hope you , me and all will be better.We deserve more but we must fight and in the hardest moments when i will not lie i wanted to suicide i think i must live for my wife , mother , friends etc and also medicine is evolving so maybe we will get better.In your case , my case neuromodulators could also work.Don t lose hope and message when you want .Also people like Violet , April are angels and many others that i forgot to mention.Again sry for wrong sentences and bad writting i am in airport atm and not feeling to good

[Balenul]

I read something and I don't know if it is true but I can't get it out of my head. It said that for the first 6 months your PGAD can go up and down. that you can also have days off. but after 6 months it will continue and you will not get any rest periods.

is this correct or is it nonsense?

This is a stupidity.Don t worry about it is not true 100 %.some true never cure but some does after years with right treatment or some meds induced cure in years 2 , 3 after they stop a Ssir that gave them Pgad....after 6 months you won t be worse...i have Pgad for more than 6 months and is better abit imo than 3 months ago.keep hope