Health Organization for Pudendal Education

Hi Chamois,

Happy Christmas to you too. Thanks for the update and explanation of what might be going on with you. It goes to show how complex the nerves of the pelvis are and how difficult it is to determine a diagnosis. You are correct that it could help someone else who comes to the forum so thanks for posting. Here's a link to some more info. https://my.clevelandclinic.org/health/d ... rts-hernia

Wishing you the best with your surgery in January.

Violet

Hi everyone,

So I got the parietal pubalgia surgery end of January and unfortunately I can now say with enough certainty that it didn't bring any improvement. The surgeon expected some improvement in any case within 2 months and wasn't optimistic that it would improve later.
Now I am back to square one, or even less, since I don't have any lead left for improving.
I went to a pain center in Marseille where they said that I should stop looking for a cause and stop trying adressing it as it is probably already healed and we will never find the cause. They said the pain was now chronic and we should work on acceptability of the pain to get better. I am fine with this approach but at the same time I don't feel thay are helping me in any way to live with the pain. Yet they kill any hope I can have to heal. Weird method. They proposed me some worshops which are during the week when I work, but as i just changed jobs i don't see myself missing one afternoon every week already. So I'll try to survive till I can attend, maybe in a year time. In the meantime I've ordered books about chronic pain to try some mind methods, and try to limit the impact of this pain on my life. (On a side note i've made a bit of progress as i restarted rock climbing)
On the other hand what's still puzzling me is that until today I have never read, anywhere, about someone having similar symptoms. Even if not located under the groin as me, I have never seen anyone writing about such violent/lightning pain that comes and disappears completely, often within a couple of seconds only, and that cannot be corralated to anything logical (position, stress, effort, sleep, food, drinks, etc.). I still have a feeling that something is wrong with a nerve and I don't know which one... Maybe one linked to the harmstring muscle. When I read about chronic pain I never read about people having such sudden surges of pain. Would anyone have references of such story, and if they found a way to get better without finding the cause?

I'm also wondering how come with all technology available today there isn't an efficient way to scan through the whole neural system (not only main nerves as done with emg) and detect if a nerve is damaged and where... I am sure with all ultrasound and emg performed every where in the word every day there would be enough data to train an ai to detect issues in any peripheral nerves.

I'm now realizing how bad the medical system is, not to be able to continuously learn and improve from every medical case as it is with high quality industries.
Sorry i'm just throwing some thoughts into the wind here without any proper logic. I just need to let some out.

Chamois

Hi Chamois,

I'm so sorry that your January surgery didn't help. I don't know what's involved with a parietal pubalgia surgery, but (as you've probably read on the forum), I do know nerves take a long time to heal. So if this surgery was designed to help repair a nerve, it may be too soon to conclude it didn't work.

I agree completely with you. It is puzzling that there isn't more information about the inexplicable ups and downs of our nerve pain---changes that sometimes occur within minutes or even seconds, as you say. I just finished a walk and I had a few bolts of pain and then some generic burning and some tingling and then it subsided, all within a 30 minute walk. So, you are not alone with this. At other times, I have more sustained increases of pain. In fact, I just got out of a terrible 2 day flare in pain and am grateful that I seem to be out of it. Anyway, I agree that there doesn't seem to be enough information about this. I'm resuming appointments with a pain doctor soon in the hopes that I can simply get more education from him about the fluctuations. If I learn something, I'll share it on here with you.

Take care,
April

Hello,

A small update to confirm there is still no improvemeny, nor any change, since surgery.
I'm stuck with no more lead to physically get better. Mentally I worked a lot on my fear of the pain and it did help to minimize anxiety when I'm not in pain. However there are still days where the pain is really bad and ultimately it crashes my spirit. How schizophrenic should one be to feel this kind of pain many times a day and still be able to live the rest of the day as of nothing happened...

Chamois

I completely agree with you, Chamois. The medical system has figured out how to do amazing things with heart disease -- stents, coronary artery bypass surgery, etc., but nerves are another story. I think the nervous system is more complex. I'm sorry to hear the parietal pubalgia surgery didn't work for you.

You have such great mountains in Europe and I hope you will be able to continue doing the things you love like rock climbing, at least part of the time.

Violet

Hello there,

so since july last year some things happened but some stay the same, unfortunately (the pain).
Regarding pain killers: I've been trying Cymbalta/duloxetine since August, up to 120mG a day since January. I do not have a lot of side effects apart from weird dreams at night. Pain is still the same, but somehow it helps me feel less anxiety during flares and mentally I can recover quicker. Now I am thinking of stopping it and doctors agree since it doesn't reduce the pain. It just shows that I still can improve a bit in terms of pain management.
For what concerns diagnosis I've had two injection tests. The first one on the obturator nerve (finally a test on it), but no improvement so negative, and the second one on the whole hip articulation still zith the same results. I am now supposed to get another one to test another nerve, to eliminate causes one by one. I've been seeing a world reknown professor to get these injections, specialized in neuro-radiology. I also consulted another pudendal specialist from Paris last summer but apart from confirming it is not a pududendal issue she was not able to propose anything to get a diagnosis. I was hoping that since the symptoms are a bit alike, she might have encountered other caes like mine... but no.
The journey continues...


Nicolas

Hi Chamois,

I'm so sorry that there hasn't been significant improvement. It's good that your current doctor is working to try to pinpoint the nerve underlying the pain. So the pudendal nerve has been fully ruled out? I was on the lowest dose of Cymbalta for a few months last year and went off of it. I do think it made me less emotionally reactive when I had a flare, but it wasn't clear that it was muting the pain any, so it didn't seem to be worth the side effects. Have you tried amitriptyline or nortriptyline? I think those helped me a bit. Let us know how the next injection test goes.

April

I don't know.......if you show the pelvic PT the precise location of where your pain is when it hits, it seems like they should be able to tell you what nerve innervates that area. Can none of your providers do that? That's really sad. I'm sorry to hear nothing is helping.

Violet

Update, in case it can serve anything in the future. I've done a block test of genitofemoral nerve in septembre 2025, and it seemed positive for a couple of weeks. 3 months after that i had 3 months completely free of pain. But it came back eventually. It is not at the worst it was once upon a time, but still it is psychologically very hard to know it can come back... Or who know, worsen... And make my life and my family's life a mysery. I've done a second injection on the same genofemoral nerve in may 2026 but this time it didn't work at all. I've written recently to the radioneurologist to get a new injection and am waiting for his feedback.
Nicolas

First of all, did the 2nd genitofemoral nerve block numb up the area innervated by the genitofemoral nerve at least for a few hours? If so, that means it was likely given correctly. If not, maybe the medication in the injection didn't reach the nerve.

Secondly, if the area innervated by the genitofemoral nerve was numbed up but there was no pain relief even for a few hours, then typically the nerve block would be considered negative for genitofemoral neuralgia and you would need to consider something else as being the possible culprit. What did the provider who gave the injection think? Did they indicate that it is for sure not the genitofemoral nerve? Have you tried a nerve block to any other nerves yet? Hopefully the neuroradiologist will be able to help you sort this out.

Violet