Look at the TLJ

[Lilas]

Hi everyone!

(Especially the Pilot)...

I have found all this extremely interesting and educative - food for thought.

While reading everything I suddenly remembered that 6 years ago I had piercing and sharp pains in my middle back (thoracic vertebrae?) after swimming and some strenous back exercises. The orthopedist sent me for a CT (disk hernia?) but I never had it. Instead, tried ice, acupuncture, chiropractor...and patience/time. After about 5 months the pain went away and I forgot about it. Now, after the two diagnosed disk hernias+dislocated coccyx (CT + MRI) it seems to me everything makes more sense together (ONE BODY). Will ask about all this at the Pain Clinic in March - if somebody listens to me (most doctors become deaf when they hear about pelvic pain/pudendal problems).

Am waiting for OK on Lyrica since Cy

[Lilas]

...sorry - made a mistake while typing...

Cymbalta 30 mg (1 at night) made me really sick so stopped taking (with GP's approval). I don't like taking medicines but am willing to try ALMOST anything. A PT at the Apostherapy clinic mentioned Medicinal Cannabis, which I'm perfectly willing to try but have found noone to give it (maybe at the Pain Clinic?).

Of course, finding and treating the cause/root of the problem is the final objective but the road is extremely painful...

Happy to read all your comments, reactions and ideas.

All the best,

Mia

[FFSeth]

Hi Lilas
I know for me after my initial injury my back only hurt for a couple days. Then urinary symptoms. Then all this other pain started. I only linked the two because of pilot. When I had my wife check my back out a few days ago it was in full blown spasm from L1 to T10. I didn't feel the spasm at all. She started working on it and my pudendal symptoms went crazy. As I have been continuing to work on that area and doing some back exercises I found online, my pudendal symptoms are reducing and I am beginning to have cluneal symptoms. It seems to be a similar process to that which pilot went through. My understanding of maignes syndrome is there is usually nothing found on imaging and treatment involves physical therapy and or chiropractic and facet injections. I'm thinking it might be a good idea for me to get an MRI of my thoracic spine. This may be wishful thinking on my part but I do think the tlj is the cause of my pudendal symptoms.

[FFSeth]

Just an update on the link between the lower thoracic and upper lumbar spine to the pudendal nerve. Some of the information is likely redundant. My apologies. I received an epidural that covered T11 through L3 and received great relief from my pudendal symptoms for the duration of the anesthetic. My symptoms are rectal, perineum, testicular, and penis pain bilaterally. When the anesthetic was injected numbness and tingling shot down to the pudendal nerve dermatome. So much so that I could have traced the dermatome if asked. I am seeing slow improvement with treatment from an osteopath and my functionality is increasing though I still have a long way to go. I am certain that pain is being referred to the pudendal nerve from the spine and my doctors agree. I have no idea how other than some alternate neural pathway or my brain somehow misinterpreting sensory information. Obviously, it makes no sense anatomically. My pn has never been sensitive to palpation and I have always been able to sit for a long time without any consequence other than slight increase in pain while sitting. However, my pain returns to baseline when I stand up. There are no long term consequences from my sitting. I have also had very little pelvic floor problems. What does increase my pudendal symptoms is bending, twisting, backward bending and what I would call a thoracic slump. Slightly leaning forward has always greatly increased my symptoms. Also, pressure on the L3 vertebrae causes referred pain to the pudendal nerve as well as my testicular pain that is not from the PN as confirmed with 3 pudendal nerve blocks bilaterally. Slight lateral leaning to the right causes left sided symptoms and vice versa. My lumbar MRI is relatively normal with no obvious compression of any nerves. If any of this sounds familiar or similar to anyone else's symptoms you may consider looking at something other the PN. I imagine I am not the only one. I will update as I get more information or results. I hope this helps someone. Good luck everyone and hang in there.

[SLR]

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[Violet M]

Hi SLR,

Thanks for the update and explanation. I hope you are finally solving this puzzle and will be able to find the right treatments now. It is incredible how none of us have the exact same pathology, even though many of the symptoms can be the same. Hope to hear some good news from you soon!

Violet