New and desperate for help - please!

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
desperate
Posts: 110
Joined: Tue Apr 01, 2014 2:11 pm

Re: New and desperate for help - please!

Post by desperate »

Violet and any other bystanders,

What is your opinion on prolotherapy - Violet I've been reading that this helped you a bit. Did you do the prolotherapy post-op? I'm wondering if this could be an option for me to help the thickened SS ligament, althought I'm not exactly sure what "thickened" is meant here? Does it need an injection to help with strength? Perhaps thickened could be another word for "sprained". If anyone comes across this and also has a thickened SS/SI ligament please let me know what your understanding is!

Thank you!
Pudendal pain started in Feb 2014. Potter MRI- useless findings (dont waste your money), tried pelvic floor pt, ART, Trigenics, Osteopathic treatment, fascial work, Massage, Shockwave, world renown chiros, osteopaths and PTs, stretching bla bla. Nothing helped but shockwave (which was short lived) and one world renown chiro that is a douchebag because he cant treat me again. All in all, God is the only one who can lead your path.
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Violet M
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Re: New and desperate for help - please!

Post by Violet M »

I had prolotherapy after surgery but it could be done before. I think it is usually used for a weakened or injured ligament as a means to encourage healing. Initially it sets up an inflammation in the ligament so it can be somewhat painful for a few days. I would do prolotherapy treatments sparingly because I have heard scar tissue can form if you have too many. So I wouldn't have the procedure unless you have been evaluated and it is determined that you have a ligament injury and pelvic instability.

One of our former directors was also a weightlifter and she had thickened ligaments too. I'm wondering if there is something about weightlifting that causes your ligaments to thicken. Just speculating here. I'm not aware of thickened and sprained being synonymous but I'm sure they could both occur. Dr. Antolak, who did my nerve blocks, said mine were thickened, and my PT and chiro said they were chronically strained.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
desperate
Posts: 110
Joined: Tue Apr 01, 2014 2:11 pm

Re: New and desperate for help - please!

Post by desperate »

Hi all,

Ok, I am finding out more and more wrong with me everyday as we speak. Spoke to a very well renown PT and he had told me that my symptoms do not collectively only describe PN alone. He thinks that I have another problem with my spine as well. My lower back pain and cold legs can imply some type of stenosis or discitis. He did not think this could contribute to PN and only PN. This makes me wonder my next steps.

I also spoke to Jerry Hesch over the phone consultation to try and eliminate SIJD - but he firmly believes he can not help me, after looking at my Potter MRI and based on my symptoms.

I have not heard anyone on this forum that complained about severe lower back pain (to the point where walking and standing for more than....what feels like a minute kills me) or cold legs/feet before. This sounds a little strange to me and my symptoms sound far more intense than a simple PN case (not saying PN is simple but there may be other things wrong with me contributing to this mess). Could you get lower back pain from PN only? can you get cold leg and feet feeling from this?

I had an MRI of my lumbar spine on April 2nd and the doctor told me there is nothing that should be of concern. However, when i took a read at it yesterday a few things stood out to me.

1)There is minor degenerate disc disease at L5-L1 with disc space narrowing and slight decrease in signal intensity and L5-S1 disc
2) At L5-S1 there is a mild asymmetry to the disc bulge to the left lateral recess and exiting L5 nerve root


Anyone have some thoughts? any opinions would be welcome!
Pudendal pain started in Feb 2014. Potter MRI- useless findings (dont waste your money), tried pelvic floor pt, ART, Trigenics, Osteopathic treatment, fascial work, Massage, Shockwave, world renown chiros, osteopaths and PTs, stretching bla bla. Nothing helped but shockwave (which was short lived) and one world renown chiro that is a douchebag because he cant treat me again. All in all, God is the only one who can lead your path.
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Violet M
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Re: New and desperate for help - please!

Post by Violet M »

Desperate, the low back pain you are describing does sound like there could be more going on than just pudendal neuralgia. I've heard a lot of people on the forum describe issues with their feet before, and I think part of the reason for that is because there is often more than just PN going on. I had problems with my feet and sciatic-type symptoms due to the piriformis muscle being in spasm.

It's hard to say whether the results of the MRI are significant. There are people who have bulging discs, etc. with no symptoms. So can you conclude for certain that those abnormalities listed, that are quite common I believe, are the cause of your symptoms? I'm not sure. Does your PT have any recommendations on stretches and exercises you can do if you do have discitis or a bulging disc? At what level is your low back pain? Lumbar? Sacral?

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
greeneyes
Posts: 45
Joined: Fri Sep 17, 2010 2:43 pm

Re: New and desperate for help - please!

Post by greeneyes »

I thought I'd chime in here since I've had chronic back pain for many years. When my back problems were at their worst I could not sit or stand for more than 5 minutes at a time. My MRI did not indicate any abnormalities, just some mild disc degeneration. The doctors I saw could not explain why I was in so much pain. Another MRI done about 10 years later showed a small bulge but it wasn't clear whether the bulge was contributing to my pain. Back problems can really be frustrating!
rainyday
Posts: 32
Joined: Mon Jul 07, 2014 1:08 am

Re: New and desperate for help - please!

Post by rainyday »

Hi desperate

Just thought I'd chime in. I get low back pain and the cold leg feeling. I herniated some discs a few years back but that pain was and is very different than the pain before that (and the coldness)... so not sure what caused what. I think my leg coldness was there before any discs were herniated is what I mean... although I did have low back pain and 'lumbago' according to the doc but nothing herniated till 2012. My piriformis bothers me a lot so maybe like Violet said, that could be part of it. Sitting definitely makes the cold feeling worse.

Hope this helps
Lily
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