SIJD & Pudendal Neuralgia - Next Step?

[RichieS]

Hi everyone,

I recently been diagnosed with SIJD (Sacro Illiac Joint Disorder) and a problem with my L5S1 joint. This all seems to stem from having my right leg shorter than the left!

I have had Pudendal Neuralgia symptoms for about 7 years now. For the First 5 years it was just anal spasming and weak erections. Then I had terrible constipation after an operation and the full symptoms developed. Testicle & Perineal pain, groin pain, bladder irritability etc.

I am currently seeing a Chiropractor and as my SIJD improves it seems my Pudendal problems are too. I only have anal spasms no. Erections are normal and the bladder is fairly calm.

Having had the problem for 7 years I am worried about long term permanent damage. With this in mind I am planning to see a Pudendal Physical Therapist Specialist called Dr Ruth Ludgrove in England. My only concern is that she does something to set me back. I have been making steady progress with the Chiropractor and I don't want to go backwards again. I have been in a lot of pain for a long time (fissures, prostatitis, l5S1 disk, SIJD, etc).

I'm sure you've all been here before....Want to get the answers but don't want to stir things up and set yourself back!

Please offer me some wisdom

Thank you

Rich

[Lara]

It's been a long time since i visit this site and i also would like someone here
to give you an advice.
I also have some sacroiliac issues,not seen by a chiropractor yet,but having acupunture and nerve pain medication.
I always wonder why some post are so active and well responded while others dont
is anyone else here with SIJD and being treated ?

Who treats SIJD? what kind of doctor?

[carolynm]

Rich,

I also have the SIJD, PN and at times sacral torsion. I see a manual PT here in Colorado, and have seen improvement over the past 4 months.

Is there any way your chiro and your PT could speak before your appt? You may have some hypo/hypermobilities in your lumbar spine (I do, also bulging disks, etc) and I would hate for your PT to not assess these properly. Does the PN PT do strictly pelvic floor work or does she have manipulation experience as well?

It seems best that they both chat to discuss your plan of care.

wishing you the best,
cari

[jacko]

Hi,

I must have been to 5 diffrent physio/osteopaths and was told 5 differnt things were causing my pelvic pain. Interestingly enough, apart from a pelvic floor specialist that I saw none of the others had ever heard of pn/pne. All claimed to be very confident in adrressing my problems which are yet to be resolved. So I think we need to be wary when we are given a diagnosis.

Out of interest how was the si joint diagnosed.

I have been doing my own stretches and exercises, mostly glutes and piriformus and have seen some improvemnt in the last year bit not enough that I can sit down for more than about 15 mins.

Hope it all goes well for you and keep us informed.

Reagards,


Jacko

[janetm2]

Although I cannot say that anyone has specifically said I have SIJD, I do have pelvic instability since surgery. Most times when I go to PT they find me out of whack, however that is less intense or not at all appointments these days. I think their work along with the core strengthening exercises they told me to do twice a day and some work at acupuncture is making the difference. Possibly also lesss lying around, working more hours, etc. Good luck.
Janet

[RichieS]

It appears the Pidendal nerve is disturbed by the muscles and ligaments supporting a misaligned sacroiliac joint

I will let you know how it goes

My realignment has brought normal erections, bladder stability and less anal spasm.

[birdlife]

Hi Rich,
I'm also investigating the possibility that I have SIJD and am waiting for urgent physio. As my PN started first with sacral pain, followed by extreme muscle tightness in lumbar, pelvis and upper legs,and then positional pain on sitting, I'm convinced that if I can get the SIJD sorted, the muscle tightness (especially in the glutes and piriformis) will lessen, and then pressure on the pudendal nerve will ease. Its great that you've actually found this to be the case!
That's twice this week I've heard the name of Ruth Lovegrove, she's in the Southampton area I think? Apparently she is PN-aware and does internal work too.
Only advice i can pass on that was given to me is: don't have any aggressive manual treatment with SIJD/sacral torsion.
And I echo Jacko, can you say how the diagnosis of SIJD was made for you. Was it done by your chiro or your GP ..
Wish you all the best when you see Ruth Lovegrove and hope you can update then..
Take care,

[ritak]

I too have SI joint issues, an unstable rotated pelvis and muscles that need to be retrained to fire upon use. I see 3 different PT people currently right now, a pelvic floor PT and one that does joint stablilization and another that works with MAT, muscle activation technique. In 5 weeks I have improved but still have along way to go.I still rely upon some meds to get me through my day. My horrible nerve pain is becoming less as I continue on with all my treatment. Its expensive but I have no choice. I have chosen to go the route of PT instead of injections as I feel my issue is mostly structural/muscular anyway.The nerve issue was affected due to the imbalance of the other in my case I believe. The structural/muscle issues need to be corrected to eliminate the problem. Hopefully I have chosen the right path to take. If anyone is in the Twin Cities area of Mn I have a few people that I believe know there stuff with PT on this issue.
Peace,
Rita

[acw]

Hi Rita,

Maybe you could post the PTs you have had experience with, and even have them added to the List of PTs in the information section of HOPE. I'm not sure I"m going to pursue the PT route now, but it would be good to have the names available.

[Polly]

Hi All

I too have SJI on left side which chiro has been treating for about 6 years. Only in the last 12-18 months have I experienced some PN symptoms (3 minor ones lasting about 1 - 2 days at most). They have always followed the same pattern, painful S3 cramped piriformis then gential hypersensitivity and lastly and most painful hypersensitivity in the inner and front thigh. I hadnt been to my chiro for a year (this was when the 1st two flares happened and I had no idea what it was), went back this January with my back in a terrible state and then experienced the 3rd flare. I told him about it and he said to be aware in case anything went numb or I lost control of bladder/bowel.

I think there is a definite link to SIJ and PN irritability - a little unsure of whether this may progress or whether if I keep up my chiro and make sure I keep all piriformis spasms to a minimum (i.e. exercising in between) that might keep it at bay. I don't have any particular "sitting" issues, apart from the lower back pain from SJI and use an active-cushion.

Am going to talk to chiro in more detail this week to see what he thinks.

Wondering whether it's worth doing PT work as well and would like to know if anyone has been to the lady in Southampton. That wouldn't be too far away from me, about an hour. Any experiences on this would be most welcome.

Polly x