Health Organization for Pudendal Education

Hi,
I am a newcomer to the forum but have been reading it for the past seven months while trying to get some sort of diagnosis that will at least put me on some kind of path to pain relief.
It started with typical symptoms of IC, after I strained my hip flexor and lower back kind of insidiously. I couldn't tell if I even really hurt myself or I just had a flare of IC. I have never had one like it but did the whole urology, gynecology, orthopedic path.
I had a piriformis injection in May, caudal block in June and SI joint injection a month later. Had several MRI's on pelvis and lumbar spine and then went back to my really good pain management dr and complained of severe hamstring pain where that and the sacrotuberous ligament attaches to your rear.
Upon another MRI a Labral tear with CAM impingement was found. Had hip injection with not much relief. Saw hip dr and he said In patients over 40, Labral repairs don't have great outcomes and it may not be your pain generator. So I would hate to jump on that surgery knowing full well that it could be just the pn causing the severe hamstring and ligament issues.
I am trying to make the story shorter for the forum purposes but I have been around the horn and back seeking diagnosis. Hip dr says try pt for 6 weeks and see if I feel better.
Saw dr. Conway, had emg which showed 4.5 on right side (painful side and labral tear side) and normal conduction on left (which does have some symptoms as well). Sitting burns on the ligaments and into the perineum. Also have pain that radiates to the bottom of my foot.
I guess I am wondering if the tightness of the hamstring, back piriformis is due to the PN or are my mechanical hip and back problems the real source.
I know no one can diagnose me but was wondering if anyone has had similar situation. I know someone on the forum had Labral surgery with success but others have not.
I pretty much am at the end of my rope and don't know how I am going to continue like this.
I was planning on a pudendal nerve block but read about PGAD from it as a complication so my dr said he would do he sacral root block to see if I got any relief as that would bathe more of the nerve area.
To all of you on this forum; you are amazing people and I feel like I know you from resding a out your journeys for so long.
Thanks to anyone who can offer something, anything. Please excuse any spelling errors-(using iPhone)
DakotaGirl

DakotaGirl wrote: I guess I am wondering if the tightness of the hamstring, back piriformis is due to the PN or are my mechanical hip and back problems the real source.

Hi DakotaGirl,

Tight, painful upper hamstrings and piriformis spasm/pain were definitely big problems for me. The musculoskeletal issues I had with strained ligaments, pelvic instability, and misalignment contributed, to causing pudendal neuralgia/nerve entrapment. I had sacroiliac joint dysfunction but no labral hip tears to my knowledge. Have you been evaluated by a PT who specializes in pudendal neuralgia?

Good luck. I hope you can get this sorted out.

Best,

Violet

Hi Violet and thank you so much for answering my post. I had a feeling you would be the one.
I have bad musculoskeletal issues. I am 60, have degenerative lower back, spondylitis arthritis, bulges, narrowing etc. then came the hip tear and fai impingement. Also grade three bone loss in both hips.
When younger was former gymnast and did weight lifting for years after that.
So with that, I wanted to say that my lower back went into severe spasm and pain last night radiating to the usual posterior thigh, buttock and foot. Groin pain especially tender and aching.
Almost went to hospital (shock I have never done) becasue in feel they will medicate and send me home and tell me to see another specialist.
Due for sacral root injection but l4-5 is probably the most damaged area and I am not sure how to attack the pain.
Saw a pelvic pt over the summer and she said that my pelvic floor was causing the issues in my sacrotuberous ligament. So confusing. I can't imagine trigger point therapy inside. You can barely touch an trigger point on me anywhere without me going into a downhill spiral.
I know the pudendal nerve is now involved in this mess of a body but if my back and hips are no good and surgery not in sight, now on earth can the pn resolve?
I have read over And over on the forum that its a condition without a lot of treatment options.
Will pt on a hip or back help that? The pelvic floor therapist said unless you address the deep internal pain that working on the back or hip would have little effect.
Nothing like taking the wind out of your sails. I see why this is called a suicide disease because that is how bad my back pain is and all I think a out is how can I end this pain.
Ps. I have seen top hip dr in Boston and when I told him about the pn, he said its over diagnosed.
Only my pain dr is willing to help with shots. And i don't tolerate meds well. Gabapentin didn't help the muscles and ligament pain at all.
The worst area is the ligament, posterior thigh/hamstring, back and hip flexor.
Sorry for the long post. DG

Your symptoms closely mirror my own, its insane. Ive had back surgery thinking the L5-S1 or L1-L2 nerve roots were effected, it didnt help. Neither did the hip surgery for FAI syndrome, I think you need to see a Pudental Nerve Specialist and worry about the hip/back stuff later. I realize the frustration because doctors are usually pretty worthless about uncommonly pinched nerves and the pelvis is full of nerves.

I would gently stretch my pirformis muscle, then gently stretch my hamstrings, and then see if the top of both of sides of my pelvis were level, and then see where your worst pain is, then draw on a picture of the pelvis where you think your pain is, then try and find what nerves they likely are, then get Nerve root blocks.

Problem for me is, my pain matches along the length of the sacrotuberous ligament down to the bottom of my butt/pelvic floor, and I had PNE syndrome surgery before. Maybe my surgeon was a cash grabbing loser, though.

Hi Charles

Thanks for your ideas. Yes it does sound very similar. I saw dr Conway , had the emg which showed abnormal results. He only said to go get three pn injections a month apart while simultaneously going to internal pt.
I like your stretching ideas. But my piriformis and hamstring are like cement and I have tried mild gentle stretches and ended up in severe (no exaggeration) pain. I can't even rest my thigh on a soft pillow. That sacrotuberous ligament is on fire. I can also feel the hip throbbing along with it.
I went to hip pt in Boston who evaluated me and said I was symmetrical aNd I needed to stretch and strengthen myself. All true except I have concrete myofacial pain and I can't move.
So frustrating. Did you get a on injection that helped anywhere along the st ligament or posterior hip or hammy?
Where the adductor meets the pelvic floor feels injured. I just don't even know anymore.
You had the PN surgery and it didn't work? Did anything at all help? Thank you!!

When my left side of my pelvis is an inch and a half higher than my right, my pain is LESS

When my pelvis is LEVEL my nerve feels disgustingly WORSE on both sides around where I would expect the sacrotuberous ligament is and below, on the bottom inside of the buttocks/pelvic floor area.

The hip pain is the reaction to your piriformis locking up to protect your PN from getting pinched more.

Stretching my hamstrings makes me pain insanely worse, so I dont do that unless Im getting a MRI or something.

I had surgery with Dr Filler in Santa Monica, Ca, and it turns out hes a total scumbag, and I noticed 0% improvement after surgery from him...wasnt even sore after surgery, which makes me think he did barely anything. When I have another surgery perhaps I will have evidence he did nothing so I can sue his ass to the wall.

That is deplorable. A surgeon shouldn't operate unless he feels you have a good percent of a successful outcome.
My pain is extremely similar. I know the Labral tear and impingement
Are bothering me but I can't say An operation would fix it and neither did the hip dr. So I am left to my own devices to figure out what to do.
And pt is all I have left. I don't see that you had any injection that helped the pain? It's starting to feel the same way on my good side. Especially when I sit Indian style with my legs folded over each other. The hamstrings ache like there is no tomorrow.
I also don't know what that means when the pelvis is higher on one side or even. Do you put it in that position or is that the Result of how you stretch it? Either way the stretching for me worsens my symptoms but I have been told by an non pn pt, that in order to get my gait back and reduce hip pain I need to do so.
What a nightmare.

Charles,

I had Filler surgery in 2006 and also had no change post-op. No pain flare, no temporary worsening, no new symptoms, nothing. At my consultation several months prior to surgery, he gave me his standard piriformis injection on one side only. He claimed he saw bilateral sciatica on my MRN and this would cure it, although I told him repeatedly that I did not have sciatic pain. I had briefly experienced sciatic pain a few years prior when pregnant so I knew how it felt and I knew at the time I saw him that my only pain was PN. Anyway, the injection did nothing but cost money. When he sent me my op proposal a few weeks later he detailed all he planned to do during the surgery plus the cost of each part of the surgery. He had piriformis surgery listed bilaterally. I spoke to him directly by phone and he reluctantly agreed not to do it (less $$ for him) because I reiterated that the piriformis injection did nothing for my pain. I was just reviewing my op reports a few weeks ago and I noticed for the first time that he indicated on BOTH the left and right side reports (injection to piriformis had only been done on one side) that he had given me piriformis injections that CURED my bilateral sciatic pain (which, remember, I never had). Thus, he counts me as part of his success rate. I don't know why an injection done months prior to surgery would even be included in an op report. I haven't posted much about my experiences with Filler, but the blatant lies on the op report that I recently discovered while reviewing my files and reading of your experience with his surgery compelled me to chime in.

Stephanies

Charles555nc,
I also had surgery with Dr.Filler. The MRN showed an entrapment at the alcock's canal. But after the "diagnostic" nerve block, he noticed that my piriformis was spasming. He therefore completely ignored the MRN findings and did a piriformis decompression instead I discovered afterward.

The surgery report mentions that he decompressed at the piriformis and progressed towards the alcock's canal. On first read I assumed that the alcock's canal was indeed decompressed (otherwise why mention it at all?).

I eventually confronted him face to face and he admitted after avoiding to answer the question three times ("Dr.Filler, did you or did not decompress my pudendal nerve at the alcock's canal?") that he had indeed not decompressed the pudendal at the alcock's canal and that he could do it "next time". Not pleased.

In opposition to you, I suffered terribly for months. Who knows what he really did.

Ezer,

With me, he didn't decompress at the ligaments (by cutting the SS ligament and windowing the ST) as we discussed prior to surgery. He said once in surgery that he didn't feel it was necessary. However at my 3 month follow up phone call when I reported no improvement, he said he would do it "next time".

Stephanie