Health Organization for Pudendal Education

Hi everyone,

I need some advice as I am feeling a bit lost. About 8 months ago I got sent for a Pudental MRI which showed acute angulation at the S4-S5 junction as a result of an undiagnosed spinal fracture [ I have had back pain and pudental nerve pain symptoms for 4 years].The report said there was narrowing in that area and that pudental nerve entrapment was likely.

I have been doing Physiotherapy focused only on my back for 6 months...and so far I have only noticed a 15% improvement. No pelvic work being done at this stage as the only physio in my area who deals with pelvic physio is on maternity leave, and she has a bit of PN experience but not to my extent. My excercises from Physio help if I do them daily, but heaven forbid I miss one day I struggle to get through the day standing on my feet.

I underwent my first round of botox 4 weeks ago, on the one side where I experience pain where I sit, and it has basically eliminated the pain when I sit and go to the toilet. However, it has done nothing for the prickly, tingly, pins-and-needles itch-like sensation in my genital area.

I never initially had back pain this severe...my symptoms have just gotten worse over time, it went from pure genital itch/tingle/burn, to added pain on my left side when I sit and sciatica down my leg, to severe deep lower back pain left side of my butt crack, now it spreads to my hips.

I am expected to report back to my specialist as to how I am going but I am scared to be honest....I feel like I am running out of options. I am only a 29 year old woman and cant run the risk of surgery failing and making me worse when I am wanting to have a child in the next 6-12 months. I can't risk being in any more pain and not being able to try and conceive. I don't know what else I could possibly try as nothing else has worked, and I don't know what else I can do to treat my back.

Would another MRI be beneficial or pointless as to showing any changes on if I have gotten better or worse?

What options of physio do I have when the closest physio who actually specialises in PN lives 6 hours away? I can't afford to travel 6 hours and take time off work to see a physio once a week/fortnight.

I feel like I am slowly starting to slip into depression again. I can't tell my family how I feel because they have their hopes up that I am improving. :'(

Am I expecting too much of physio? I have no real guidance on how soon or how fast you start to notice improvement. And I don't have anyone who can work on my pelvically and it hurts too much for me to even try and reach down and do any form of internal PN to myself because my back hurts too much!!

I am feeeling at a loss ATM...any advice would be much appreciated. I have noone with any experience that I can talk to.

I feel your pain! I too, have PN. May you find a solution to your pain! I am going to see Dr Barry Jarnagin, very soon, whose interview with Violet, (one of the administrator's of this site) and is posted on this site.

Question: Did you have the Botox through the vagina? Were the injections on just one side? How long did it take to feel the effects of the medication, so that the sitting became noticeable better? Was the Botox covered on your insurance? Didn't this procedure make your pain somewhat less?

Please answer as soon as possible as I have to make a decision as to whether I have the Botox injection by June 5th. I have been told by the doctor's office that no insurances would pay for Botox into the muscles surrounding the pudendal nerves. It would cover if Botox was injected into the bladder, however.

I would have asked this question earlier, but I just found out I would pay out of pocket for it. It is very expensive since I would be having ? units. The doctor's charge would not be paid either. It's all out of pocket. $2350.00.

My prayer for you is a solution to your pain.

Gretel

Thanks for your acknowledgement, it means a lot.

I live in Australia so I havnt heard of that specific doctor before. I will have to check out the interview.

I have 250 units of botox injected into only one side, the side that causes me grief when sitting. I felt the effects of it immediately after it was injected, my sitting pain was greatly reduced. It got injected into the pelvic muscle through my perinium/outer labia.

I was so fortunate that my doctor didnt charge me the full amount as I am on minimum wage and have a mortgage to pay, and I cant afford private health insurance, so it only cost me $480 instead of $2000+.. paying $500 for flights to see the specialist still hurt my wallet.

The expenses are ridiculous!

I hope your injection goes well!

I hope your injection goes well. It

sailor_moon wrote:Hi everyone,

I need some advice as I am feeling a bit lost. About 8 months ago I got sent for a Pudental MRI which showed acute angulation at the S4-S5 junction as a result of an undiagnosed spinal fracture [ I have had back pain and pudental nerve pain symptoms for 4 years].The report said there was narrowing in that area and that pudental nerve entrapment was likely.

Are they saying that the nerve root at the sacral level is impinged on by the angulated bone due the to spinal fracture and that is what is causing the PNE? If so, I am wondering if you have seen a neurosurgeon or orthopedic spinal specialist who can advise you on whether PT is likely to relieve that impingement or whether it would require surgery.

Or did they tell you the PNE is in the peripheral nerve farther down? The treatment you pursue would depend on where the entrapment is.

To me, six months seems like a long time to do physio and not have much improvement.

Violet

Thanks for your reply Violet,

I havn't seen a Neurosurgeon or orthopedic spinal specialist. When I spoke to my PN specialist, he didn't state where the entrapment lied. I can tell you specifically what the MRI notes are, I honestly don;t understand the specifics as hard as I try, this textbook jargon is a bit hard for me to understand what exactly is going on! The MRI states the following:

Acute angulation at the s4/s5 junction of the sacrum causing some narrowing of the sacral canal.
Relatively narrowed perinueral canal by an accessory sacrotuberous band forming the falciform process and arising just above the ischial spine. There is subsequent narrowing of the perineural canal to a minimum of less tham 2mm. Right pudental nerve entrapment above the iscial spine appears likely.

I honestly have no idea of what any of the above actually means!

I have emailed the specialist in regards to where to go from where I'm at so I hope I can get some positive answers.

SailorMoon,

Well, the report says right pudendal nerve entrapment but if I am reading correctly, you say your pain, especially with sitting, is primarily on the left. So, that would make me question whether the diagnosis of entrapment on the right is significant -- since your pain is on the other side. That is something I would ask the specialist about. I would also pursue the question of whether the angulated sacrum is impinging on the S4/5 nerve roots.

If you want to learn more about the anatomy, you can check out the following link: http://www.pudendalhope.info/node/13

Violet

Hi Sailor,

Can I ask who did your botox injections and where? I am looking for a doctor to perform botox injections to the Levator Ani Muscles. I had Dr. Jordan perform them, but he used a very low dose.