New Member grateful to HOPE

[catherine a]

Hi Marc,

If you email info@whria.com.au and mark your message to Sherin Jarvis (Physiotherapist) Ask her if she can recommend a Phsyio. in Melbourne who is familiar with Pudendal neuralgia.
Sherin is doing wonders with male patients but she's in Sydney.

It would be great if she could find some help for you in Melbourne. I know she has lectured at the university there about PN.

let us know how you go.

Catherine

[Marc]

Hi Violet,

TrP1 on the first page you recommended (http://www.triggerpoints.net/triggerpoi ... formis.htm) shows the right spot.



Hi Catherine,

Thanks for the PT contact, I will try that and hopefully she knows someone in Melbourne who can help me.

Really appreciate all the help. I will keep you all posted.

[Marc]

Apologies for taking a very very long time to post my next update. Well here is what has happened since my last post one year ago.
- had the PNMLT and came up positive on both sides, worse on my left side which is where I get pain
- put on Lyrica with increasing doses but no effect at all
- had 3 nerve blocks in Melbourne but no effect
- tried PT but very little to no effect
- referred to Thierry Vancaillie in Sydney
- had MRI/MRN in Sydney which highlighted possible entrapment
- more PT but little effect
- put on Endep which reduced pain but made me very drowsy
- nerve block in Sydney but no effect
- next step is surgery or pain management specialist
- currently taking voltaren or naprogesic which helps a little combined with panadeine forte
- had my first child 4 months ago, baby boy
Has any one had the nerve release done by Vancaillie and if so could they share ther experiences?
Also, I am a bit worried about taking anti inflam pills and panadeine forte for long periods, your thoughts?
Lastly, what pain management medicines have people found effective?

[Lernica]

Marc and Gracie,

You are not alone! I have a throbbing left leg (and groin), too, along with stabbing left perineum pain. Also throbbing left sacrum pain. I think that intense severe perineum pain can radiate down and around the immediate areas such as the groin, leg and sacrum. Basically it feels like the whole left side is inflamed, right?

[Marc]

Hi Lernica,

It is amazing how the pain can move around. I aways get pain in the back of my left leg when I sit as well as all the usual PN areas. Most people say a toilet seat is comfortable but not for me the pressure on the back of my left leg causes me pain. On some days the pain is in my calf, it feels like the vains are really bruised and very tender to touch. After spending some time on this site I realise that I should be thankful that I don't have a worst case of PN.

[shawnmellis]

Hi Marc and HerMajesty,
For about 1 year I mainly just had pain in my upper perineum and some in lower perineum that I noticed when sitting. 2 months ago, I reinjured myself doing gardening and I have had a new burning pain in a different location which is both thighs in the upper back part of them and also in the inner thigh area for both thighs. I first injured myself standing up from a squatting position 1 year ago and I felt a pull and pain in my left adductor muscle (thigh muscle) which connects to the lower and middle part of pelvis. When I reinjured myself 2 months ago, I also felt a pull and pain in this area of my left thigh muscle. My MRI showed that I have tendinosis on both of my upper thigh muscles. Tendinosis means chronic degeneration or tendon injury, so that is most likely somehow related to the cause of my pudendal neuralgia. I am not sure about other symptoms you both have, but my MRI showed varices (enlarged veins) on both sides of my pelvis in the dorsal branch of the pudendal nerve all the way to just outside the alcocks canal. Dr. Dellon, said that adductor muscles can entrap your pubic ramus tunnel (dorsal branch of pudendal nerve) and there is another nerve close to there also called the perineal nerve which branches out to the femoral nerve (thigh nerve), so you could have compression of both your pudendal nerve and your perineal nerve which branches to the femoral nerve which goes to the back of your thigh (posterior femoral nerve) and also inner thighs. It could also possibly be your obturator nerve or another sciatic nerve. As far as the sciatic nerve goes though, you should probably have pain that goes all the way down your legs to your feet from that and not just in your buttocks, back thigh and inner thigh. My pain is in my back thigh, inner thigh, some of buttocks and sometimes front, which can be the perineal nerve radiating to the femoral nerve branch or it could just be the femoral nerve itself compressed separately or obturator nerve. This is what I am trying to rule out and figure out now, but I am pretty sure it is the perineal nerve which is in the lower perineum area by your pubic ramus bone area, which branches to the femoral nerve of your thigh. Any thoughts? You guys can email me at shawnmellis@gmail.com if you want any time and feel free to join me also at a facebook group for pudendal neuralgia called Pudendal Neuralgia Support at http://www.facebook.com/groups/10383831 ... 838315764/ to also chat online with me. Take care and hope to hear from you soon
Shawn

[carolynm]

Marc,
Welcome to the group. I am fairly newly diagnosed as well. This site has literallly saved my life time and time again.

Lernica,
I agree, I think the pain can radiate as well. When I'm in a flare, I can feel it down to my knee.

Glad you finally got diagnosed and can proceed with treatments, Marc.

all my best,
cari

[Marc]

Hi Cari,

thanks for well wishes. I am seeing Dr Vancaillie this Thursday to discuss next option which will be an operation I suspect. A bit to think about with that option.

Hi Shawn,

Thanks for the reply. Not sure I will be much help as I certainly don't know the anatomy of the pudendal area as well as you. I think I will need to learn more about my PN as I suspect I am going to have it for a while.

Marc

[donstore]

Marc,
Oxycodone (opiate pain reliever) has helped me. Let us know what Prof. Vancaille recommends.

Don

[Marc]

Hi Don,

I have been given the anti-inflammatory Celebrex as well as Panadine Forte to manage the pain. I have also been given Tofranil (anti-depresent) but I haven't tried that yet.

At best the pain is reduced, but by far the best way to keep the pain down is to sit as little as possible during the day.

Hi Shawn,

Below is some of the findings of the MRI has done in Sydney.

Technique: High field strength imaging was acquired at 3 Tesla. Coronal T1 and T2 fat suppressed images were acquired throughout the pelvis. Thin section coronal axial and sagittal intermediate echo images were also acquired through the true pelvis. Post contrast images were acquired.

Findings: There is some prominence of fluid in the trochanteric bursa and subgluteus medius and minimus bursal spaces bilaterally raising the possibility of mild hip abductor tendinosis. The tendons appear to be of relatiely uniform signal.

The sacral nerve roots outline normally. The proximal sciatic and piriformis musculature appears to outline normally. There appears to be normal outline and preservation of perineural fat surrounding the pudendal nerve in it course past the sacrospinous and sacrotuberous ligaments.

The left pudendal nerve does however appear to be relatively thickened prior to and in the proximal course through the Alcock's canal. The inferior rectal branch also appears to be somewhat thickening in the proximal portion. There appears to be focal relatively greater enhancement of the left pudendal nerve in this region.

More distally, there is normal outline and enhancement.

On the right, there is focal stranding of the soft tissues but without enhancement along the expected course of the peroneal branch of the pudendal nerve. It appears to continue into the perianal soft tissues. The dorsal branches appear to outline normally bilaterally.

Thought this report might be of interest to the forum. It doesn't mean that much to me yet but I am starting to learn a bit of the lingo.

Marc