Health Organization for Pudendal Education

Redz wrote: Should I have the piriformis added to the MRN script?

I think without doubt!
I am similar to you Redz. In that most people here, have PS because of PN and once the PN is resolved the PS goes too. Mine is all because of my piriformis muscle and scar tissue around/or in it which has encased the sciatic and pudendal nerves and possibly the PFCN too. All because of a fall onto my bum and subsequent haematoma in the muscle itself . So it can happen that way around.
I guess another way that could occur without an injury is if the pudendal nerve is in a very tight area but not being irritated and when your P muscle goes into spasm it drags on the pelvis and narrows that space further, therefore actually compressing the nerve.
Hope things are calming down now after your biking jaunt.
Helen

helenlegs 11 wrote:I am similar to you Redz. In that most people here, have PS because of PN and once the PN is resolved the PS goes too. Mine is all because of my piriformis muscle and scar tissue around/or in it which has encased the sciatic and pudendal nerves and possibly the PFCN too. All because of a fall onto my bum and subsequent haematoma in the muscle itself . So it can happen that way around.

I think you're case is more likely, Helen. I just recently got another confirmation from a HOPE community member that her PN and sciatic nerve were entrapped at the level of the piriformis. These nerves were actually smashed up against her pubic bone. Paulette is the other case who had PN entrapment in the piriformis. Both of these people previously had PN decompression surgery via the TG approach. I don't know of anyone who's PS symptoms went away after PN decompression. Mine certainly did not. I don't doubt it's possible, though. I'd believe almost anything at this point!
Redz, if you've missed it - check out Debbie's recent post of her Potter MRI: http://www.pudendalhope.info/forum/view ... 844#p25844
Luckily, no abnormalities were found with her piriformis, but Dr. Potter is checking that area.

Hi Redz,

Welcome to the site. You are certainly amongst friends here. Most people on this site can certainly relate to your frustrations and confusion. I know i can!!

I too went down a similar road to you early days with my diagnosis. I also began getting pain in my urithra and tip of penis. I was initially sent to a urologist for tests for infection, 2 Cystoscopy's and ultra sounds up my back passage. I also had numerous courses of antibiotics!! I must have seen about 5 Urologists.

I have had issues for 10 years now. I also used to work out in the gym very hard and do a very lot of abdominal training. You will find that their is often a link to heavy training and heavy abdominal training and pelvic pain.

My story is a little different to yours because i also have a very bad back injury including 3 bulging discs and a spondylolisthesis at L5/S1 joint. I realised myself after years of miss diagnosis that my pain began around the time of my back injury. At the time of the injury i asked for a scan but my doctor didn't request one. Finally 7 years after the injury i was given an MRI of my spine and found my injury.

I am also confused and not 100% sure what is causing what pain. I think my spine injury has a part to play. I also think my excessive training lifting heavy weights and intense abdominal workouts has also had a part to play. I am sure i have muscle tension and trigger points in my abdominal muscles and pelvic muscles. I have been told by a Massage Therapist that by bum muscles and piriformis is extremely tight.

I am convinced a combination of the above has caused me to have pelvic floor dysfunction and imbalance. This is supported by the fact that when my back injury occurred my hips were actually completely out of line. When i stood in front of the mirror it terrified me with one hip higher than the other. When i think back now this was my pelvic muscles twisting my body out of line. I don't think i have ever really allowed in to heal or balance, before going back to the gym and other activities.

Out of interest have you had a MRI scan on your back, or do you have any lower back pain??

I am currently waiting to see a top spine surgeon and Dr Baranowski in London who is a pelvic floor and spine pain specialist.

My issue is knowing what is actually causing what pain. I too have major problems with my piriformis muscles as well as my hips? I also have pain in the stomach, bum, legs, obviously lower back and genitals. I too have pain in my penis and groin. It feels like a pulling, throbbing sensation and sometimes loss of feeling when sitting.

I also cannot sit for long periods.

It can take a long long time for a proper diagnosis. It is so frustrating and emotionally draining.

You have some very similar symptoms to myself and i understand your worries and frustration. You are certainly in the right place for support, understanding and some sound advice. I am relatively new to this site and have found everybody to be very supportive and helpful.

Once again i would like to send you a warm welcome and the very best. You have to just keep pushing for a diagnosis. You must try to get as much advise and understanding of your condition as possible. In the UK you have to do your own research and push push push for the right doctor. If i had not joined this forum and done my own investigating i would still be going round and round the system, probably still seeing Urologists. However, i did my research and told my GP which doctor i wanted to see and gave him no choice. What i am trying to say is don't give up keep pushing for help and you will find the answers. It is very hard both physically, mentally and emotionally but stay strong.

Take Care
Stratts

Hello Stratts,
I have had a MRI of the lower lumbar. Ok there came back clean, never had any back pain and still don't. I do get great relief with xanax as far as piriformis and pelvic floor muscle With in the last week my urethra pain has gone up to a level pain 9, Bad.
Thanks
Redz

Redz wrote: I have a MRN may 23 with Dr Hollis and then an appointment with Dr Cohen. I have found out that Dr.Cohen does guided PN blocks with Xray. Is this ok.

Redz, xray is the same as fluoroscopy and works well for blocks given at the ischial spine which is a bony prominence close to where the sacrotuberous and sacrospinous ligaments cross. The pudendal nerve runs very close to this area which is the most common are of pudendal nerve entrapment. I had a series of two nerve blocks done using fluoroscopy (x-ray).

The injection into the alcock's canal cannot be done with x-ray because there are no bones close enough to guide the injection.

I had piriformis syndrome on the same side as my worst PNE side and the piriformis pain is now gone on that side after having had PNE surgery. I believe the pain of PNE caused the piriformis to go into spasm.

I did a stupid thing recently though......I was feeling so well I started jogging and went on the treadmill. I think it caused SI ligament strain and now I am having some piriformis pain on the left side. So I guess the lesson to learn from that is that if you have bad ligaments, don't do anything to strain them. I'm thinking of trying some prolotherapy again.

When are you scheduled for your nerve block?

Best,

Violet

Hello violet.
Thank you so much for clarification. So where would the needle go, lower back where I received my ganglion injection or is it more in the center of the butt cheeks?
I went to get the Potter MRN on the 23rd have not seen the results yet. I will be seeing Dr Zhou. On Tuesday. Will give an update then. I do believe you said you will be going to NYC this summer and ask what you should see. Being from NJ and have worked in NYC I can give you somethings you may want to check out. Boy I miss the city I didn't want to leave.
I almost forgot. Why is it nobody ever gets long term relief from PN blocks.
Thanks redz

Redz,

The nerve blocks are given through the butt cheeks -- sort of in the middle. Some people get long-term relief from nerve blocks but we don't hear about it very often. I think there may be several reasons many people don't.

1. They are entrapped too badly
2. The nerve is too badly damaged
3. The medication doesn't always exactly hit the target.
4. They have more going on than just PN

Sorry to have brought up feelings of homesickness for you. A city boy at heart, eh? So, what's the best thing to see in NYC? You can PM me if you want.

Violet

Hello everyone,
My apologies on not posting sooner but I wanted to see how l have felt after my 2nd ganglion injection. First let me say that I have not seen a PN doctor since I have received my Potter MRI. I have an appointment with Dr Cohen in NJ on July 3. has anyone been seen by Dr.Cohen? I have been seeing Dr. Zhou in wood bury,NJ. He readily admits he is not a Pn Doc.and has been doing his home work on PN as lam. He however is very well known in the area of ganglion injection and urethra pain due to other causes. He has given me two ganglion injection, 1st block went well with some relief in my urethra and buttocks. 2nd ganglion injection I had last week has knock out all my urethra pain so far. Thank god... relief, it feels so good. I will be receiving my 3 injection this coming Thursday. He has also given me my 2 piriformis injection with complete accuracy and relief. I'm however getting a some blatter pain ,it is tolerable and some pelvic floor spasms, not bad but noticeable. Here is the odd thing, no relation to the ganglion injections. In the last 12 weeks that I have not been working and not sitting I have been doing all my work standing. Most on my kitchen island, it is waist high. When I get tierd of standing up strait. I move back about a foot and bend my hips and put my elbows on the counter to do work on my computer. This seem to really agitates my PN and gives me the blatter pain the same when lifting Anything over 30 lb make my blatter tighten up .Any thoughts.
Thank
Redz

Great about the positive block results Redz.
I didn't know anything about this treatment but it seems from this http://arizonapain.com/pain-center/pain ... par-block/ that the Dr. is going for treatment for pain rather than a 'which nerve' diagnosis block?
I do that bench height leaning with elbow support lots, but I've got to say it is such a relief for me 'standing' like that, although I'm not bent too far forward, well guess you aren't either, using a computer. I do shift around a bit when doing it . I also know the added discomfort when carrying a slight weight and you would naturally think that extra support from the bench would take some pressure off (Well it has to hasn't it) So it must be the angle you are standing at (too low?) or the time spent doing it and poss a combo??
When reading the Nantes criteria it's the compression (when sitting) on the PN nerve that causes the pain, not the angle of a persons stance that creates PN pain. Although I have got to say that crouching down does it for me too?? BUT with the Nantes Criteria in mind it should be another pathology that is causing your kitchen island pain.
Well you did ask Maybe the injections have caused some additional inflammation/irritation or have you experienced these bladder pains before this?
Hope the positive block effects last for a long time.
Take care,
Helen

Red, are you sure it's the actual bladder or could it be referred pain from abdominal muscles that are having to work harder than usual. The pudendal nerve innervates the bladder sphincter and some docs believe that interstitial cystitis can be caused by pudendal neuropathy. So, I'm not sure what's causing the bladder pain but those are some ideas.

The fact that your pain is somewhat positional certainly suggests that there is some structure, possibly a ligament putting pressure on the nerve.

Good luck with your nerve block. You can read about one person's experience with Dr. Cohen here: http://www.pudendalhope.info/forum/view ... ?f=57&t=60

Best,

Violet