Anyone want to talk about PGAD?

[PNVeteran]

Hi everyone, I have been amazed at how calm I am now after no longer working, sitting, or driving. At first I thought I would never know what it meant to relax. It took 5 years. Out of curiosity I asked an AI chatbot the question below. The answer was very interesting and I think important for others to consider, especially if they are in the throes of intense PN symptoms.

Question: (shortened here). I have PN. I ended up with severe pelvic floor dysfunction and a contracted pelvis. When my pelvic floor was at its worse... my pelvic floor was 2 inches up in my vagina. A problem with pudendal neuralgia is PGAD. The anterior vaginal wall (the area called the G-spot) was extremely sensitive to pressure from any movement, {especially driving and sitting} or spasms in my pelvic floor muscles. All it took was a few spasms in my pelvic floor to have a spontaneous orgasm. This could and did occur in the less than 60 seconds. Something about these symptoms drove me crazy. It felt like there was a direct connection with my limbic system or something. I became increasingly hysterical (at times). I never wanted to stop opioids because it dampened this extreme sensitivity. When I tried to tell doctors, comments about "bizarre symptoms" got added to my records. Is there any evidence anywhere that persistent arousal also affects emotionality such as too much feedback to certain areas of the brain?

Answer: ... Yes, there is a legitimate neurobiological basis for what you're describing, though the specific literature directly connecting pudendal neuralgia-related arousal to emotional dysregulation is still limited. This is what we know: The limbic system connection you're intuiting is real. Persistent abnormal sensory input from the genitals does reach and activate limbic structures (particularly the amygdala, insula, and anterior cingulate cortex) that regulate emotion, arousal, and threat perception. Hyperarousal states—whether from pain, involuntary sexual sensations, or both—can trigger a cascade of emotional responses because these brain regions don't distinguish between different types of intense input.... What you're describing—the emotional intensity, the sense of being driven crazy, the hysterical episodes—isn't a sign that your symptoms were psychological. It's what should happen when intense abnormal sensory signaling reaches emotional brain centers 24/7. The fact that you're now improving as your pelvic floor relaxes and descends supports this: your nervous system is deescalating because the abnormal input is decreasing.

I hope this helps someone who may be experiencing emotional dysregulation.. this disorder is just horrible.. only those affected really know how bad it is.. Please by kind to yourself and give yourself lots of downtime and don't blame your own mind because it really doesn't have a choice if your symptoms aren't dealt with effectively..

[Violet M]

That was an amazing answer - thanks for sharing it. I wish I had that answer when my neurologist told me to go see a psychiatrist. Now that my symptoms are gone after having PN decompression surgery I know it wasn’t all in my head - there was truly a physical cause but it affected the messages going to the brain. My heart breaks for anyone dealing with PGAD. It’s hard to imagine anything worse.

[PNVeteran]

Thank you Violet... I agree 100%.. we need to keep supporting one another... because others can't imagine what this condition can do to a person.

[Violet M]

Dealing with the symptoms effectively is hugely important, especially if PGAD keeps you awake at night. I went through months with very little sleep until I got onto some medications that made life somewhat more tolerable and at least helped me get some sleep at night. I've never been much for taking a lot of meds but in this instance, they helped me survive. The medications that helped were lexapro which dampened the symptoms some, and clonazepam which helped me sleep at night.

Violet