Health Organization for Pudendal Education

It is so great that you have so many to give you advice New Mom! As each of us is different I think it best that you ask your doc LOTS of questions and do lots of research and then follow your gut.
All the best,
Roxy

I wish I could answer the question of why I developed the rsd symptoms I did but I can't. My case is complicated as I have many other things causing me pelvic pain including that I had a large vaginal wall cyst removed after the pn started that separate from the pn pain, the scar tissue seems to continue to cause me sympathetically mediated pain. I also have hip problems I'm dealing with.

Honestly, the first round of botox I had helped tremendously for 4-5 months and then when it started to wear off and my pain came back, I had pulsed radio frequency done at s2, s3, and s4 that set me into months and months of pain which continued to get worse. I also had a 2nd pn block in feb 2010 that caused me major major problems.

My symptoms are typical symptoms of sympathetically mediated pain - allodynia, burning, widespread neuropathic type pain through my hip pelvis and sacrum - which feels different from the actual pn pain since i can actually feel the length of my pn through my whole pelvis starting at my sacrum through alcocks and the vaginal wall and perinium. When my son even touches my hip or buttock area with his hands I jump in pain. My pt tries skin rolling and other work to try to keep the tissues healthy and I scream in pain from it. My skin turns strange colors at times.

New mom-

A pn block is a nerve block directly into the pudendal nerve. A sympathetic block is a nerve block that blocks a certain area of the sympathetic nerve chain. There are many types of sympathetic nerve blocks for the different locations of the sympathetic nervous system. They are used to treat rsd/crps and other sympathetically mediated pain problems.

Google sympathetic block and sympathetic nerve chain and it will do a much better job of explaining than I could ever possibly come close.

Hope this helps.

merrie

merrie wrote:A pn block is a nerve block directly into the pudendal nerve.

They are most definitely not injecting into the actual nerve itself; they are injecting the material into the space around the nerve so that it will bathe the nerve tissue externally. The CT guidance is to ensure the placement as close to the nerve as they can get it, without actually penetrating the nerve.

Everyone is full of great information here!! I'm awaiting my appointment with Dr. Hibner for botox injection. There are all sorts of different numbers flying around on the amount used. He said for bilateral they use 20 vials, so for just my left side it will probably be 10. I'll know to ask more questions when they call back with the schedule. I too would love to hear all of the pluses and minuses to botox. My PT is trying to talk me out of it as well as a few friends. What I keep telling them all is I've been in pain for over 16 months now...I have to try something, I just can not continue this way, especially since it keeps getting worse. I'm willing to take a chance that the botox will help. If it doesn't then we'll know my issue is nerve and not muscle related is the way Dr. Hibner & Castellanos explained it to me. (We are bypassing the CT guided nerve block since there is a very slim chance I could have the shingles virus affecting the nerve).

New mom, I so hope you are better able to enjoy your little bundle of joy!!

Tracy

Newmom,
All I can recommend is to not let people force you into doing medical procedures you are not comfortable with. At your stage, I think I would do more pelvic floor physical therapy to see if you have a muscular problem. Sure it will be much slower than botox but without any of the potential negative side effects. I think it is a good idea to explore fully the least invasive procedures first.

New Mom,

Another possibility would be to try lidocaine injections into the muscles first before trying Botox. Lidocaine is a short acting numbing agent and if injecting that into the muscle helps, that could point toward the problem being muscular rather than nerve related. I've heard this is what Dr. Gajraj does -- tries the lidocaine first to see if the Botox is going to be effective and if lidocaine doesn't help then Botox probably won't either.

Whatever you decide, best of luck with your procedures and your recovery.

Thank you so much everyone for your wonderful input! I have a lot more to think about than I initially realized regarding the botox injections. Sometimes I feel even more confused about what to do! It's a difficult decision since you never know the outcome until you try.

The past 48 hours have been rough - was flat on my back since having PT done on Friday. It was my 2nd session and she did trigger point release, myofascial massage and skin rolling (hopefully I got these terms correct). Later that day I felt a little sore, but by the next morning I was in tears from the pain and the tramadol ER that Dr. Jordan prescribed wasn't even making a dent in my pain so I went back to the Nucynta. For whatever reason Nucynta seems to help me best.

The PT noted that several of my muscles were severely in spasm on my left side while my right side seemed pretty normal. The muscles that were severe include (all only on the left side) pubococcygeus, iliococcygeus, obturator internus and superficial transverse perineal. She recommended if I proceed with botox, to inject all of the above except the superficial transverse perineal (b/c it may cause incontinence). Has anyone had any of these muscles injected? I know when muscles are botoxed, other muscles tighten up to compensate so would this potentially cause my right side or other muscles to spasm? My PT said my left coccygeus and left piriformus muscles were okay and not spasmed.

Thank you again everyone for your advice and guidance. I'm still unsure what I should do but I hope to figure it out soon.

NewMom,
Nucynta is the replacement for Ultram (Tramadol) by the manufacturer Grunenthal so in principle it should be better (The molecules look very similar). I can only speculate that Dr.Jordan thinks Tramadol, which is now much cheaper, is as good as Nucynta. Also he may prefer the ER formulation to give pain relief around the clock.
Regarding Botox in my case, the muscles that were not spasming prior to the injections started pulling (piriformis, hamstring and several others) according to my PT.

NewMom,

I'm so sorry to hear about your setback. It is an all too common incidence of PT, I'm afraid. That's why I stopped going. I hope your visit at least clarified for you which muscles should be injected (if any!)

There are many ups and downs on this PN journey. I myself am just coming off a very painful week-long flare. You will too.
Stay strong!

Lernica

P.S. I sent you a PM in response to your PM, but given the sporadic success of my PMs, I'm not sure you got it. Moderators -- what's with the PM function???