Everything you ever wanted to know about PNE!

[Kara29]

Hello Everyone!:hi:


Here’s a Comprehensive Website that gives you Everything you wanted to know about (PN), Pudendal Neuralgia (PN), or Pudendal Nerve Entrapment (PNE) from what it is, some Facts and Questions from patients, what the symptoms are, diagnosis, treatment Options, for example it goes into detail regarding such topics: Lifestyle changes, Medication Management, Physical Therapy, Botox, Pudendal Nerve Blocks, Pudendal Nerve Decompression Surgery, Neuromodulation and information about the Intrathecal Pain Pump. The site even talks about Emotional Aspects that go along with having PN/PNE, the Anatomy of the Pudendal Nerve, Related Conditions that have very similar Symptoms to IC, A List of North American Doctors who diagnose and treat PN/PNE, a list of Physical Therapists who treat it, Personal PN/PNE Stories, and even a Pain Scale. The link to this website is as follows:
http://www.pudendalhelp.com/home.html
Here's another great site to get information and support from: http://www.pudendalhope.org/


Thank You to the Doctors and Administrators who put this site together.It is to them that I owe the greatest gratitude for putting it up on the web for all Chronic Pelvic Pain Sufferers to view. I have used it in a forum that is just learning about PNE/PN as it has become increasingly similar to those of us that also have Interstitial Cystitis. Thank you for putting together such a comprehensive site. It’s a lot of information but it could save an IC person from getting their bladders removed which is very drastic and in my case as well as many others, we may not have known what caused the pain because it was so close to the bladder that Doctors had and currently have trouble not seeing other possibilities for the their patients. I want to bring this to the table and forefront so that they all take one more step before drastic operations. This is meant for patients and doctors to start discussing this disease together as a team.:smile tee

So take a look and print out any information you feel may help you and your doctors in your quest for pain reduction.

Well Wishes to You ALL!

Kara Reese:smile tee

[Arizonian]

Was your PNE surgery successful last year? Have you fully healed and do you feel normal? MY physical therapist recently told me that your doctor no longer performs the vaginal method of operating on the PN. I would say I am about 15% healed from my surgery. I use the Scenar device for pain.

[SCI]

Hi Arizonian,
Just had an email from the website that you'd replied to a thread of mine. Since I haven't had the PNE surgery, bet you were replying to Kara Reese who has written so much on that site. Would be interested in hearing from you, though, and we can share symptoms, etc.
Take care, SCI

[Kara29]

A great IC Sister of mine who also has PNE gave me the link and information to this wonderful new support website and support forum message system just like you see here on the ICN but for Pudendal Nerve Entrapment Sufferers. It offers a whole host of wonderful stuff, so check it out and let us know what you think!:hi:

Well Wishes to you ALL!!!


Kara and Thank You Sharon!:smile tee

[ICsmiles]

Thank you Kara!
The website she is referring to is www.pudendalhope.org.
If your pain is possibly nerve-related, this is the place to start learning. IC and pudendal neuralgia can be so complex and confusing, I decided the best thing I could do for myself was research, research, research. I found others who had symptoms similar to mine, and then I started finding new answers. To anyone who may be suffering from a pudendal nerve condition, my heart is with you.
Your IC/PNE sister,
Sharon

[ICsmiles]

Here are two other important PNE sites with active support forums.
One is based in the US; the other is in the UK.

I encourage other PNE patients to check these out as they are all valuable for information and support. I have met wonderful people through the forums who have become friends who provide me the support I need through the tough times when my pain is at its worst.

I also get the latest information about PNE doctors, and the types of treatments and surgeries they are offering.

http://www.tipna.org

http://www.pelvicpain.org.uk

[Krisssy]

A great IC Sister of mine who also has PNE gave me the link and information to this wonderful new support website and support forum message system just like you see here on the ICN but for Pudendal Nerve Entrapment Sufferers. It offers a whole host of wonderful stuff, so check it out and let us know what you think!:hi:

Well Wishes to you ALL!!!


Kara and Thank You Sharon!:smile tee

I am in the process of making an appt. with Dr. Conway after suffering for three years. I have had cliteral pain and now vaginal pain, arousal disorder and frequent and urgent urination plus constipation. The worse symptom is the cliteral pain which tends to sometimes move to the vagina or the bottom of the buttocks. This has ruined my life for the last three years, and at this point I can barely function. This happened after having three abdominal surgeries. I would like to know if your surgery was a success and if you are pain free now. thank you. Krisssy

[ICsmiles]

Krisssy,
Kara is not on the board lately but I have also had PNE surgery; in fact, I have had two PNE surgeries by two different surgeons. What I can tell you is that no two surgeries are alike, as no two patients are alike. Unfortunately, there are more people who do NOT get better with this awful PNE condition.

I am better than I was before my surgeries, but I am still not able to work or have an active life -- we think this is because I had an entrapped nerve for 15 years before I was diagnosed and on the path to surgery, which I needed. My pudendal nerve was basically "squished" in several places and by the time I had surgery I could hardly walk. Now I can walk and I don't have as much pain, but you couldn't say I am "well." I may be having a third surgery on a different nerve in my pelvis that is in the same area and my surgeon thinks my symptoms may be generated by this nerve.

Check your inbox as I am also PM-ing you. :D
Sharon

I am in the process of making an appt. with Dr. Conway after suffering for three years. I have had cliteral pain and now vaginal pain, arousal disorder and frequent and urgent urination plus constipation. The worse symptom is the cliteral pain which tends to sometimes move to the vagina or the bottom of the buttocks. This has ruined my life for the last three years, and at this point I can barely function. This happened after having three abdominal surgeries. I would like to know if your surgery was a success and if you are pain free now. thank you. Krisssy

[ICsmiles]

Krisssy, I tried to PM you but your inbox is full.
I was going to tell you it is easier for me to go into more detail on the phone. I would be happy to tell you about my experiences, and the experiences of others who have had PNE surgery. I also know two people who had surgery with Dr. Conway.
So send me a PM with your phone number and I'll be glad to give you a call.

[ICsmiles]

Hello - I've started a blog for those suffering from IC and PN (pudendal neuralgia) or PNE (pudendal nerve entrapment).
You can find it at:
http://nervy.posterous.com

Shannon aka ICsmiles
Note: If you have tried to PM me, I just realized my original email is not working with this site. I've also changed my first name back to Shannon, which was the name my parents originally gave me) Sorry for any confusion.

[naturegal]

Hi ICsmiles,

I just visited your blog and it is fantastic! Great job! I definitely think this is what I have (PNE). I am wondering how you are doing? Was the surgery mentioned in your blog just this Halloween?

Thanks for your contribution to fellow sufferers!

[LyseMagness]

I have had increasing problems with hyperarousal, beginning with (while I am asleep) orgasmic type build up that shuts off at the engorgement stage and cannot be carried to the release state, leaving my clitoris engorged and painful and eventually my whole vaginal and urethral area is in pain, which seems to increase my regular i.c. pain. I have been thinking this probem was female priapism or clitoritis, which is sometimes caused by certain antidepressants ( I am taking amitriptyline in small dose). Now I am wondering if instead it might be due to pudendal nerve irritation. Does anyone else have these aggravating erotic night time episodes that start out as if a pleasnt orgasmic experience is coming, but instead end in pain for one or two days. I have had I.C. for 10 years and now take fentanyl patch, Lortabs for breakthrough pain and a month ago added amitriptyline and Valium 10 mg to be inserted vaginally. thank you.

[ICsmiles]

Lyse -
I have a friend with PNE who had problems with clitoral pain and sometimes hyperarousal.

It all depends on which branch of the pudendal nerve is irritated. The dorsal branch of the pudendal nerve goes up to the clitoris, so that is the branch that is likely having some kind of problem, whether it is entrapment or irritation... the only way to know is to go to a PNE specialist.

You can read a lot of information on it and find doctors at www.pudendalhope.org or www.tipna.org.
http://www.pudendalhope.org./node/54

FAQs
http://www.pudendalhope.org./node/8

I also studied the anatomy of the nerves so I could understand what was going on better. There are really good illustrations on both those sites. Let me give you a couple of links:
http://www.tipna.org/info/anatomical_images/index.htm#PudendalCanal
Anatomy
http://www.pudendalhope.org./node/13

I also googled "dorsal branch of pudendal nerve" and found this:
http://en.wikipedia.org/wiki/Dorsal_nerve_of_clitoris

The best advice I can give is to research - as long as you have access to a computer and can google the terms you want to learn - you can find so much.

Plus asking others -- you might want to post a new thread about clitoral pain and arousal and you will likely meet others with the same problem. Then you can learn from each other - like if one of you goes to a doctor and it helps, you will have the benefit of knowing about it and trying the same doctor yourself.

Best wishes!

[ICsmiles]

Hi ICsmiles,

I just visited your blog and it is fantastic! Great job! I definitely think this is what I have (PNE). I am wondering how you are doing? Was the surgery mentioned in your blog just this Halloween?

Thanks for your contribution to fellow sufferers!

- - - - - - - - -
Hi naturegal!
So sorry I missed your post until now.
Thank you so much for your feedback on my blog! You have given me the incentive to get back on it, to start writing again. I became discouraged because I went for my pre-op appointment and ended up NOT having the surgery. I was given nerve blocks in the area where rI was to have the surgery, and the blocks did not work, which meant that surgery in that area was also not likely to work. So my surgery was canceled.
My surgeon, Dr. Dellon, has referred me to a pain specialist who I found, thanks to the internet and research once again! His name is Dr. Joshua Prager, and he is one of the world's foremost authorities on chronic pain and treatments to help relieve it. So now instead of "trying to get well" my focus is on "trying to get out of pain" - because my quality of life has gone downhill so quickly.
i am now bedridden for the most part. Standing for longer than 15-20 minutes brings on so much pain I end up near tears. I have to use a wheelchair to go places - it reclines so I don't have too much pressure on my "sit bones" and pudendal nerve and other nerves that are also affected by sitting.
One of the moderators of pudendalhope.com posted her story -- and it is starting to sound like I am ending up on a similar path. Her name is Amanda and she is a very brave, strong young woman. Here is her story:
http://www.pudendalhope.org/node/67
You will see other stories written by the moderators of the group - they are all fascinating journeys, all with different outcomes.

Thanks again for your kind words. I'm going to get back on my blog - my appointment with Dr. Prager is this coming Monday, and I am very hopeful about it. I will learn what my options are to help me get out of this pain! :(

I hope you are finding the information you need to pursue your own diagnosis and find the treatment you need. Best wishes to you!
Shannon

[LyseMagness]

Thank you I.C. Smiles for all the sites to go to. I really appreciate it. Will check into them and try to start a new thread about the hyperarrousal. Not sure how to do it but I am sure there are instructions on the i.c. site to tell me how to do it. Lyse

[Briza]

Lyse--see this thread
http://www.ic-network.com/forum/showthread.php?t=34448&highlight=sensations+clitoris