Health Organization for Pudendal Education

Hi Everyone Sorry I have not been on here in soooo... sooo... long Hope everyone is doing well and still has Hope and that PNE has not gotten on your nerves too bad or been too nerve wracking for you LOL Sorry I just thought I'd throw in some PNE humor. Laughter is one of the best medicines. Please listen to Pelvic Messenger Show Online Jan 31st Thursday at 7 p.m. ET. I will likely be the very first caller on Elisabeth's show called The Pelvic Messenger which has over 20,000 listeners so please listen in. For anybody who has never listened to any of her shows I highly recommend it! I was very skeptical at first to listen to one of her shows, but quite impressed. She has had so many prominent doctors from all over the world on her show talk about PNE an other pelvic pain conditions. You can also listen to all of her previous shows online. Her website where you can listen to all of her upcoming and previous shows is http://www.blogtalkradio.com/pelvicmessenger Before I talk to Elisabeth, I was wondering if anybody including any of the mods here know of all the current best methods of treating urinary frequency/urgency a common symptom of PNE as far as with medications, lifestyle changes, or other treatment? I know Diazepam is a highly prescribed and effective one both orally, rectally, and topically compounded and applied. I was also wondering if anybody has had success with PRFA, Pulsed Radio Frequency Ablation. As far as I know only a small amount of people have had this done, but out of the group, they have had improvement from anywhere from no improvement to 3 months improvement to 9 months improvement and some longer. Also has anybody had experience with botox to the bladder or frequency waves to the bladder or other treatment? As far as botox to the pudendal nerve area, I've heard of no success with that, but maybe others here can tell me of some successes. I"m trying to learn what the most current and newest methods of treatment are for both pain and symptons of PNE. There have so far been about 5 people I know of who have had surgery with Dr. Tibet and it is still too early to know the outcomes of all of these surgeries. I highly still recommend anybody take surgery with anybody seriously and it be the last resort. Also please help me bring awareness and research to PNE by signing my petiton aat http://www.ipetitions.com/petition/requ ... g-for-all/ and by donating money to this website www.pudendalhope.org They do set aside some of their donations to research . Take care and There's Always Hope!
Shawn

By the way, I still have not had surgery as I'm waiting for 1. finances 2. better surgery results I am heavily considering PRFA at this point and still have PNE but still very blessed because I only think about my blessings and fight pne instead of letting pne fight me. Take care.

Welcome back Shawn and good to hear you have a plan for yourself. I have no input for you show questions but I did put the petition in my Christmas emails/cards and some friends even forwarded to others. Also the people at worked asked for a charity for my brother's passing and I listed HOPE, some money did come in from that. Take Care
Janet

Hi Shawn,

Thanks for the info.

To answer several of your questions:

1. Some people have reported improvement in urinary frequency/urgency with tricyclic antidepressants such as amitriptyline. I had too many side effects from tricyclics but an SSRI, lexapro, provided some relief of symptoms. PNE decompression surgery dramatically improved urinary symptoms for me. Not that I am recommending everyone go out and have surgery -- I think you should try conservative measures first, and like you, Shawn, I see surgery as a last resort.

2. I know one person who tried Botox into the bladder walls with disastrous results. Pain escalated tremendously and has never returned to what it was previously. I've heard mixed reviews of Botox into the pelvic floor muscles.

3. PRFA and pretty much every PN treatment I've ever read about receive mixed reviews from patients. What helps one person may not help another . Unfortunately, the reality is that you don't know if it's going to help until you try it.

4. There are several docs trying innovative techniques with neurostimulators including some with 32 leads. I think it's too soon to know the results yet.

Progress remains slow. My dream is to see more research on PN - one of the goals of pudendalhope. As you said Shawn, part of HOPE's funds are being set aside for research. Thank you Shawn & Janet for helping to spread the news.

Violet