Help is on its way! Pudendal Nerve Entrapment

[Kara29]

GOOD NEWS! IT IS REAL and more common than we know.

My last nerve bock gave us some very crucial information regarding what is wrong with me. Based on the results of the last nerve block they think that it's most likey the Pudendal Nerve. It's called Pudendal Nerve Entrapment. There are a few places that the Pudendal Nerve can be trapped. The NH Doctor feels that it is the part of the nerve that supplies pain signals to the urethra. He said it is looking like it could be that the interligamentous grip between the sacrospinous ligament and the sacrotuberous ligament is the more likely area of entrapment. This is the most common area especially in women. It's like a pinched nerve but MUCH more serious. Since I've gone through every medication that exists for trying to alleviate the pain of the trapped nerves, they will most likey have to do surgery. The good news is that they are narrowing down what is wrong with me sooner than I thought they would and THIS Doctor DOES the surgery. Since my sisters wedding is in June, I would be doing its ometime at the end of the summer if it comes down to that. In the meantime they are going to try the same nerve block that I just had with a steroid in it to try to reduce the inflamation. It doesn't help most PNE patients but we are going to give it a shot anyway. I will be doing a few more tests and procedures before we get to the end of the road.

Thanks for listening to me and always being so supportive.

Kara

[catlover2]

I'm so happy you are finally getting some answers and some relief from the pain. :woohoo:

[humpieumpumkin]

Great news at last Kara! :woohoo: Im so glad things are starting to look up for you between this pain and your car! I hope they get this fixed for you quick. Good luck and keep us posted!:smile tee

[Mel53H]

Great news, Kara!:woohoo: :smile tee

[aprilmae]

Yippeee!!!! PROGRESS!!!! I am so happy for you!

[SharonA]

Things are looking up. :woohoo:

[Sarojini]

:grouphug:

That's great :) I'm so happy they've found out what's going on!

[ihurttoo]

This is great news! I hope that you will finally be pain free after they do the surgery. I know you have waited a long time for news like this. Congratulations! Love and hugs, Amy

[Bessie]

That is awesome...... I am glad you are on the right path :woohoo:

[Kara29]

I just wanted to clarify. I still have a long way to go until I get to the surgery point but it's in the cards and I have a Doctor who does it. I probably won't be heading to surgery until mid summer. I have several more tests and procedures to go until we get there. My next step is the steriod injected nerve block. It has not been scheduled yet beccause it was Friday.

I will keep adding each step of the way. Maybe some of this information will help someone else out someday.

I am at the beginning of the PNE journey. Unfortunately its very complicated. The website for PNE is so scary. I can't go in there. It's way too overwhelming. My Doctor said that it may be good for me to stay away from it at this time so any questions that I have I email him instead and get it right from a professional.

I am so used to using message boards it is strange to be asking the Doc directly. I am grateful though! I have not met a single doctor in 9 years that does this without charging people.

Kara

[Bessie]

What a great doctor you have.......that is awesome that you can email him and ask him questions. I think that is so wonderful and so commited to his patients. He sounds like a true gem :)

I know you have a long road ahead of you but just remember that every journey begins with one step and we are all here to help you with that journey.

Like I have said before.....you are a true inspiration to others and you touch our lives with your courage and strength. Hang in there!!

[ICLori]

Kara, I am just thrilled for you! I really think this will mean, a pain-free Kara at last! This makes me so happy! :) Thanks for letting us know, I always wish health and a painfree life for you, and I see that you are one step closer to that now!

Blessings,
Lori

[msjennas]

Did you ever get the nerve block done? How did it go? I've been diagnosed with everything under the sun and had no relief and I just spent several days researching it myself and am convinced it is the pudendal nerve that is causing my burning and pain and lots of other unpleasant symptoms. Please let me know how it turned out. Thank you, Jenna

[Kara29]

I had so many nerve blocks I can't count. But I do know that I had I think 3 PNE nerve blocks. That is how they found out that it was PNE. I have entrapment at the upper portion of the nerve the ischial something....I will not be having PNE surgery until we see how this Vestibulectomy went. I won't be healed for at least 6-8 weeks.

It's best to find a PNE Specialist for diagnosis of this disorder.

There are a few PNE Specialists that diagnose and treat PNE in the US.

Here is the list of PNE Specialists in the US http://www.spuninfo.org/index_files/Page771.htm

Good Luck with your diagnosis. I went to NH for mine.

If you need further information, feel free to PM me.

Kara

[msjennas]

Thanks Kara, I did check on that list. In fact, that site is how I figured out what I have. Unfortunately, there is no one even close to where I live. I have contacted them though and hope to hear from them soon. Do you know why the block only works for a while, instead of permanently? Jenna

[Kara29]

The blocks has short and long acting lidocane and some steroids in them. None of these things last more than a few weeks. The lidocane or marcane or whatever they use to numb it is like local anesthetic. It is out of the nerve in a few hours. I got 12 hours of releif with most of mine. Some people do really well and get better with the steriod injections. They go every few months for them. They have lots of other treatments as well that you can try before they will do PN Decompression. Some people also get some relief from PNE Physcial Therapy. Again it would be best to see a specialist for that too. They are listed on that site. I don't have a doctor near me either. I had to drive 7 hours to get my diagnosis and specialist.

I hope they email you back.

Kara