Pelvic pain - Persistent genital arousal disorder (PGAD)?

Hello @dancing1, You will notice that we added to your discussion title to better describe your question and hopefully bring in members with experience to share with you. While we wait for other members to respond, I thought you might find the following article helpful if you have not already seen it.

-- What is persistent genital arousal disorder (PGAD)?:
https://www.medicalnewstoday.com/articles/249594

PGAD is maddening to put it mildly. I was 69 when I started having unsolicited arousal. I am now 75. The arousal started about 6 months after I fell from a step ladder.
I have found help through my chiropractor, my urogynecologist, pelvic floor therapy, pain management dr & tramadol.

I know of close to 1,000 people who struggle with this disorder, but not all have been given a “diagnosis.” Most will not discuss it in an open forum like this. There are many causes for the symptoms labeled as “Pgad,” but the fact that it seems to activate the pudendal nerves and create genital dysethesia seems to scare off or make others uncomfortable —including the medical professionals. My understanding is that the latest research sees it as primarily a neurological issue and NOT a psychiatric issue. (neuropathy, altered firing of nerves, Tarlov cysts or other growths on sacral nerve roots, etc. You may even be checked for a demyelinating or neurogenic diseases that result in sexual dysfunction to rule out all possible causes of the symptoms.) The challenge is finding a medical professional who is willing to work with you to investigate the causes.

Yes, I’m 55 years old, believe I have suffered since childhood, but it peaked around age 40. Mine is on left side only (clitoris area). I use topicals (Lidocaine, etc) to survive.
I believe mine is related to pudendal nerve damage.

Below is a link to an Instagram page where you can find out more about personal experiences with this disorder and interviews with medical professionals working with this disorder (included additional link to Dr. Robert Echenberg interview at the end). Although the Pudendal nerves may be triggered, Dr. Echenberg views this as a pain dysfunction/processing disorder and is clear that it is not a sexual dysfunction disorder. (personally, I think the name “Pgad” is misleading and needs to be changed) On the Instagram page, you will read that “lack of healthcare provider knowledge” about this disorder was sited as one of the greatest barriers for getting help/treatment. In communicating with our community, the general feedback I received regarding their experience with medical professionals supported the fact that many (not all) medical professionals lacked knowledge about the topic, were uncomfortable discussing the issue, and appeared not interested in dealing with it. This includes medical professionals at the Mayo Clinic (have not yet heard from our community of any positive experiences at the Mayo Clinic regarding this issue —yet this is where many doctors tell their patients to go) Hopefully these negative experiences will change as more of us step forward to share our stories with the world and medical professionals.
https://www.instagram.com/pgad_official/

I am a 75 year old woman with peas. I have lichen sclerosis which is regarded as N auto immune disease. As a result of flare ups I have Pgad since the lichen sclerosis injures and damages the tissue of the vulva including the clitoris. To control the LS and Pgad I use Clobetasol ointment applied topically and pregabalin (Lyrica) and amitriptyline to control the flare ups and Pgad. These medications do a fairly good job of controlling the pain, inflammation, and Pgad. I sympathize with Pgad patients. I know what it’s like and it’s no pleasure that is for sure. It took me years to get a proper diagnosis.

I’ve had severe nerve pain for 22 years progressively getting worse. The PGAD symptoms started about 5 years ago. Doctors believe I have small fiber neuropathy. I’ve tried every medication recommended for nerve pain but the pain always wakes me at night for hours. It is progressively getting worse and very difficult. I’m wondering if the PGAD symptoms are a result of autonomic neuropathy. I have other symptoms of autonomic neuropathy and this is common with small fiber neuropathy.

Have your doctors ruled out other issues that can cause pgad? For me, it appears to be caused by nerve compression (chronic radiculopathy found at L5/S1) I have an upcoming MRI to figure out which issue I have with my spine and nerves so we can get the situation fixed. I am beginning to view pgad more as symptoms that something else is going on in my body, rather than an actual diagnosis. I know some would disagree, but, for me, this seems to be the case. Are you familiar with Dr. Irwin Goldstein’s work or have you heard any of the interviews by Dr. Robert J. Echenberg? There are some great materials that discuss the five regions which may cause the problem (end organ, pelvis/perineum, cauda equina, spinal cord, and possibly the brain) You can go to http://www.isswsh.org and click on the resources/videos to learn about this. Have you had an EMG/NCS or MRI? My understanding is that the EMG/NCS will not show small fiber neuropathy, but a punch biopsy could help with making the diagnosis.

Thank you for your reply. I will check out the link you posted. Interesting that you mention L5-S1 nerve compression because the MRI showed this. I originally had endometriosis that they thought burrowed deep in my pelvis and attached to the lumbar/sacral plexus. The pain originated in the sacrum that felt like back labor and the nerves would fire from there. The MRI showed nothing at that time. About 8 years ago I started having leg and feet pain that has progressively been getting worse. It gets unbearable if I walk even a few blocks or do any movement or stand or sit too long. The PGAD symptoms started during this time. I had a lumbar MRI that showed narrowing at L5-S1. It is confusing.

There is a MR neurograhy looks at compressions all over body
I’m looking for nerves all over my body. Since I took cipro antibiotic

I also have tarlov cyst in my thoracic lumbar sacrum !!!