Continuing saga

[Matt238]

Well it's been one year since this all started. I've posted here on my symptoms but will briefly highlight. After sexual encounter started getting heaviness in thighs, excess need to urinate, followed by extreme tingling all over pelvis which turned into pain in urethra and burning testicles along with extreme sitting pain in perineum. After multiple rounds of antibiotics, antivirals and urine and blood analysis they found nothing to cause it.
Been seeing a pelvic pt, urologist and neurologist currently on long term anibiotic, neurotonin and cymbalta with pain about 50-70% what it was at its peak which was a good 9. Getting a Potter MRI soon as well.
My current pains are sitting on the sit bone area causes deep ache accompanied by burning,sizzling sensation on skin, pain after orgasm testicle urethra and inner thighs, right side sciatica symptoms and burning feet intermitatly.

Was wondering is it characteristic for the initial pain to come on very strong and then die down to a constant lesser pain?
Doesn't PN sitting pain occur in the periunum and not the sit bones?
Would this mean based on above symptoms I may have PN rather than PNE?
Any other things I should try besides my current route of treatment?

Thanks for all your continuing help and support!

M

[Violet M]

That's great that you are seeing improvements, Matt.

Was wondering is it characteristic for the initial pain to come on very strong and then die down to a constant lesser pain?

It depends on the person and the history. Mine developed gradually but I know other people who were hit with sudden pain.

Doesn't PN sitting pain occur in the periunum and not the sit bones?

Technically the pain would be in the perineum but they are so close to each other, and pain can be referred. I had pain in the sit bones with sitting.

Would this mean based on above symptoms I may have PN rather than PNE?

I think it's impossible to say for sure. You can read the Nantes criteria for PNE and that might answer your question but I did not fit their criteria exactly even though I had PNE. http://www.pudendalhope.info/sites/defa ... iteria.pdf

Any other things I should try besides my current route of treatment?

It depends on whether you are satisfied with your improvement up to this point and it not, do you feel like your current therapies are going to get you to where you want to be eventually? I don't know your complete history but there may be other things you need to rule out like hernias, tarlov cysts, or labral hip tears if you have any hip pain. Be sure to ask them to look for these on your upcoming MRI.

Violet

[helenlegs 11]

Was wondering is it characteristic for the initial pain to come on very strong and then die down to a constant lesser pain?

As Violet said everyone is different although the brain will read strong nerve signals as 'OMG!!! disaster!', then OMG!, then OM mmm? been here before and nothing bad happened to endanger survival, then O!. . . . that again.
Only the brain can send out pain signals, so unless you catastrophize, spend time concentrating on pain, excessively worry and stress and/or have a doom and gloom mindset that things will never improve (guess that is catastrophizing ) then the brain will read the exact same nerve signal but downgrade it. I think this has happened with me to an extent, although if I wanted to I could step the pain up anytime, by 'doing stuff' without pacing.
Thing is that it can be very difficult not to catastrophize etc when in pain.

Got to say that my sit pain is most definitely in the sit bones rather than perineum and i definitely do have PN.

No one can tell exactly unless you recover with treatment. . . then PN, or an entrapment can be seen on surgical intervention; obviously PNE. A persons history of pain onset is often the greatest influence on whether PN or PNE and usually a none traumatic initial onset = PN and not PNE.

Check out for tight piriformis muscles to rule in or out for sciatica contribution.

Good that things look as if they are improving Matt
Take care,
helen

[Matt238]

Thanks Helen and Violet

Yeah things are definitely better than weeks 1-8, that was practically crippling pain. Still though it interfers with my day to day and my pt doesn't want me doing exercise other than walking light swimming and yoga. While I wasn't a jock I do miss working out in gym, biking, hiking or for that matter sitting through a dinner or movie with no pain. So there is still much work to be done. Will post any updates and results of Potter MRI when I get it done.

Thanks

Matt

[helenlegs 11]

Just been reading other posts and came across Violets answer to Chex which is also applicable to your question about sit bone pain Matt.

In the Nantes Criteria article they go by exquisite tenderness at the ischial spine as one of the essential critera of nerve entrapment, not tinel's sign and I remember Dr. Bautrant used this same criteria when I saw him. He pressed on the ischial spine on one side and said "that's where it hurts, right?" and he was correct.

http://www.pudendalhope.info/sites/defa ... riteria.pd
(remember the Nantes Criteria article is specifically for diagnosing PNE (not PN).

Presence of Exquisite Tenderness on Palpation of the Ischial Spine
Palpation of the ischial spine (posterior and slightly lateral) during digital rectal or vaginal examination is very often tender. This does not constitute a true Tinel sign, as this palpation is locally tender, but does not trigger the distal pain described by the patient. Many anatomical structures are situated at this level, making this tenderness very difficult to interpret: passage of the pudendal nerve in the sacrospinous ligament, insertions of the sacrospinous ligament, ischiococcygeal fibers of levator ani muscles, diffuse hypersensitivity. Furthermore, tenderness of this region is not specific as it is
also observed in asymptomatic subjects. However, unilateral tenderness at this site is suggestive.

Hope the scan does highlight the problem Matt.

Take care
Helen

[Violet M]

Recently read something by Stephanie Prendergast that said the PN causes pain in the sit bones. Sorry, can't remember where it was though. I think you posted the link, Helen.

Violet

[helenlegs 11]

Had a look and it was this link http://www.pelvicpainrehab.com/blog/201 ... eating-pn/
For example, it is possible for a patient who has certain types of SI joint dysfunction to have less space between the sacrotuberous and sacrospinous ligaments. This space deficiency can influence the nerve’s ability to glide and move freely, and the end result may be neuralgia. Another issue that has the potential to alter neurodynamics would be a trigger point in the obturator internus muscle. This trigger point can result in a narrowing of Alcock’s Canal and irritate the nerve. (Alcock’s Canal is the structure through which the pudendal artery, veins and nerve pass.
Incidentally, both of these patients likely have the same symptoms—burning at their sit bones that worsen with sitting. However, the treatment plan for each of these scenarios will be quite different. Indeed, many patients with the exact same symptoms will have very different objective findings. Often I have to explain to my patients that having pain with sitting does not mean that they have entrapment. Numerous impairments cause pain with sitting.

I can really relate to the Nantes criteria quote tho'. The 'exquisite tenderness', mine is very apparent all round that bony area but the pain definitely doesn't travel.
Helen

[Matt238]

Thank you for the great information. I actually am being treated at Stephanie's practice not by her but by a PT within her firm. She also believes I don't have entrapment but possible irritation in one of the branches. We are working on trigger points and skin rolling to try to relieve the symptoms. I think it is helping because I actually sat 5 hrs today without noticeable pain but it did catch up with me by bedtime, have to take it easy on those for a while. Thanks again for the Info. I will read more on Stephanie's blog link you sent me.

[flyer28]

Matt, there are many similarities between your symptoms are mine (and I am Matt also).
Nevertheless, my pain also started after prolonged sex, faded away, then came after every sexual climax, faded away before becoming chronic.
Main area of pain is the base of penis, penile shaft, partly scrotum and perineum.
I also had 2-3 episodes of huge neuropathic pain at the base of penis, I though that I had penile fracture (excluded by ultrasound, no tissue damage).

I also went through several rounds of antibiotics (useless) then started some Amytriptylin/Neurontin, several blocks.
I had ultrasound guided dorsal nerve block - no change whatever. But after 3 blind corticosteroid shots into perineum and pubic area the pain diminished greatly, only to return back after 2-3 months.
I regret one thing: I started PT too late, after 2 years of problems and this therapy was not very useful becuase it was made by PT focused on strenghtening pelvic floor (and I need to relax). Only in December 2012 I found quilified PT who is excellent and is doing some internal release, I had this year 2 lets say 14days lasting good periods with only mild pain/dyscomfort before relapsing again. I had to skip some PT sessions beacuse now I am struggling with pneumonia/possible sarcoidosis, but after I get better I will resume PT all the way.
I feel I have pretty nasty CPPS with vigorous pudendal neuropathy but hope no real entrapment (no sitting pain, pain is bilateral).