S I Joint dysfunction and Pudendal Nerve entrapment

[hoopwhirl2007]

Hi, 8 years of pain and medics able to put me right, I happen to ask my GP for my medical history ie x-rays, MRI etc and I came across an x-ray report which states 8 have lots of problems with my SI joints being almost fused and obviously a problem. This has never been reported to me and I was never given a copy of this letter before I recently demanded it. Read below ...perhaps this could be the reason for my PNE and possibly other people too? Read The ligaments of the sacroiliac joints in the bottom of your spine are continuous with the ligaments that the pudendal nerve travels through. Tension at these joints may contribute to irritation of the pudendal nerve.

[anna1234567]

I’m seeing a chiropractor on a regular basis. It doesn’t really help for the PN, but it helps with the spreading of the pain to nearby areas.

[Konagirl60]

You’re absolutely correct that the pudendal nerve runs continuous with the sacrosphinous and sacrotuberus ligaments in our ischial spine.

The pudendal nerve is entrapped or stuck onto them in 77% of entrapment cases.

It happened to me. The pain was excruciating and intractable on sitting and after four PT sessions ( 2 done internally ) when lying down.

Have you been offered a pudendal nerve block or a shot of Dipro-Novo into your gluteus muscle is near your hip? Both helped me.

[hoopwhirl2007 in reply to Konagirl60]

Hi there, thank you for your valued info. I have had a nerve block which only lasted 8 hours and they got me in my sciatic nerve also by mistake resulting in my whole leg being frozen! The shit in the gluteus sounds interesting. Where are you from,? Are you in the State's cos of so, you have more medics there who understand this problem we have. So anyway, how is your pain now? I wish I could find a solution. 8 years now work pne and going out of my mind work desperation. How long did the pain relief last after having your shot in the gluteus muscle? Many thanks

[Konagirl60]

I’m Canadian. When I developed PNE my GP of 20 years turned on me and every specialist she sent me to did the same.

They did NOT examine me. They did NOT listen to me. I was emotionally and verbally abused, dismissed, misdiagnosed with cyclothymia/vulvodynia and neglected. I was NOT seen in a Pain Clinic.

The pain specialist did not do the nerve blocks correctly. They were trans vaginal and I got no relief at all. I wasn’t delivering a baby AND I was 51 years old and I hadn’t recently delivered a baby!

My pain was always rectal and perineal but as stated, no doctor I saw in British Columbia, Canada would listen. Within a year I was losing whole bowel movements in my panties, my pyjamas and in the bath.

I saw a neurologist in Toronto who did a proper pin prick examination of my inner thighs, outer genetalia and because I was numb in many spots ( I couldn’t feel a thing when the pin was delicately placed on my skin) he referred me to the best specialist in Minnesota.

I went to Minneapolis and the specialist did a fluoroscopy guided nerve block into my buttock where the nerve runs along the ligaments. It did not hurt, I sat pain free for 12 hours and it proved my pudendal nerve was in trouble.

I saw my GP a month after I returned home and she was furious! She did NOT believe the US specialist’s diagnosis of pudendal neuropathy and she did NOT follow through with his treatment plan. She also informed me that my pain specialist had dropped me.

All they did was sedate me but the neuralgia was never controlled and I almost died three years in due to severe sleep deprivation.

The PNE woke me up every night with nocturia and burning pain 🔥🔥🔥🔥I was neglected, abandoned and left to die.

I met a registered nurse consultant. I hired and paid her to advocate for me. She procured my decompression surgery.

I had surgery in 2011. The burning pain was gone within three months but the neuralgia continues to this day.

Two other surgeries were done too late so it’s only been five years to convalesce from major physical trauma and an aggravated Sympathetic Nervous System. I have daily 5/10 pain. I’ve weaned off four meds and I only take two at bedtime.

The gluteal shot with Dipro-Novo lasts about 2.5 months.

[zozzie in reply to Konagirl60]

I have been diagnosed with pgad but I know that it began with a neurologic event that flashed through my pelvic floor and down the back of my legs. Before seeing a uro-gyno, I researched hip flexor/psoas because they had became extremely reactive with arousal and touching and ran across the pudental nerve....that it travels through it. I am now seeing a specialist (Minnesota) but am a long way from getting it sorted. I do not have actual pain, but my whole pelvic floor is involved and rectal/anus frequency with increasing urgency numerous times a day.... and once had an "oh oops" event. You are the first who I have run across to mention the anus issue. I am so sorry for all of the trouble you have been having, especially with the medical... malpractice. Have you been able to resolve the bowel issue somewhat and what did you do. Before the oops event, I went to a gastro Dr,... he had never heard of pgad or pelvic floor issues with the rectum/anus and suggested that I eat more fiber. I do not have pain but am sure there is some sort of entrapment of the pudental because of how it started, the hip flexor triggered response, and the whole pelvic floor involvement but cannot have MRIs. And may I ask who you saw in Minnesota... perhaps who I just started seeing. So far it is hopeful.... but so, so slow. I wish you relief from all that you are going through....

[Konagirl60]

I saw Dr. Stanley Antolak in Edina, Minnesota. He retired 5 years ago. Who are you seeing?

If I sit too long. walk too far, lift too much or do any hip flexion activities I get flares. When that happens I lose stool but nothing like what I lost pre-operatively.

My nerve was left pinched in three spots for too long. It won’t heal fully. I’ve accepted it.

I have found that not eating dinner after 7 pm helps.

I’ve never had urinary incontinence or urgency.

I hope you get the care you need asap. Neuralgia hurts and agitated our Sympathetic Nervous System.