Please Listen 2 Important Pelvic Messenger Show Online Jan31

[shawnmellis]

Please listen 2 Imporant Pelvic Messenger Show Online Jan 31

Postby shawnmellis » Thu Jan 24, 2013 4:57 pm
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! By they way I've still not had surgery but looking into PRFA now.
Shawn

[molly]

Hi Shawn,


I have had pulsed radio frequency abulation in London, it gave me a moderate lelel of relief around25% for about two months, so not a great result but more than nerve blocks lasted.


I also had surgery last May with Dr Tibet, and have made some progress. Currently working with pelvic physio to improve muscle function. Sitting remains difficult but base line pain levels have reduced aound 30% 40% so I still remain hopeful Iwill make more progress. My mine improvement is in the rectal pain and burning. Having sail all that Ihave moderated my life enormously and am careful what Ido. I am going to try and return to work next month on a staggered basis so we,ll see how Iget on with that.

Regards Molly

[nyt]

Shawnmellis, I have had botox numerous times and have found it very helpful. I have spoken to individuals who don't post on this forum who have done quite well with botox but I also know individuals on this forum that botox was a disaster for them.

[shawnmellis]

Hi Nyt, Did you get boto to your bladder or to your pudendal nerve area or other area? Glad that it helped you. How long has it helped you for so far and does it require you to get it done every 6 month or so? Did Dr. Hibner do it? That's encouraging.
Shawn

[flyer28]

Shawn thanks for the message, I appreciate all the work you have done (petition, book etc.)
I remember your problems were similar like mine, may I ask you how are you proceeding? any improvement?
I had very good period from July till November, now I am struggling again, but giving a chance to PT.

[shawnmellis]

Hi Flyer28 Until I see major improvement in success rates for surgery, I will likely have PRFA done this year. If that does not work I may consider a pain pump implant depending on if pain level stays bad another year. What's your plan?

[shawnmellis]

Hi Molly How long did you have PNE prior to surgery with Dr. Tibet and where were you entrapped at? Thanks
Shawn

[kathyd]

Hi Shawn Mellis,
Im so sorry you are suffering with this pain.
Like you I am considering apain pump trial, and awaiting for things to get moving on it. (my doc is waitng for approval and scheduling issues etc)

I also would like to try PRF like Cari did. I have the bladder urge/retention issue (how my pelvic pain ordeal began in 2006) Many pain meds made the retention issue worse which is why its been hard to get relief.. Are there any meds you know of that help with urinary/urge/ retention?
I have dealt with that for a long time ...awful feeling,-- it feels like something is blocking me from peeing... my theory is it may be something else not PNE .. and am still looking for answers.
Im trying to learn more about PRF and see if its an option for me as I've tried blocks and they don't numb me, really.

You mentioned botox to the bladder...Putting it right in the bladder muscle can be risky for folks prone to retention from meds (like me)
as it could freeze their ability to pee even more,, until the botox wears off which is awhile. botox directly to the bladder was not recommended for me.
But they considered doing it to the"bladder neck" as my blocked feeling seems to come from the urethra and the abdomen Psoas...I haven't tried that yet either as I scared of side effects. My pelvic gyn is new (she took over for a pelvic pain expert who retired ... we hated to see her go) Anyway this new doc is in learning mode, when it comes to our kind of pain.

My other issue is severe anal rectal throbbing which started after surgery with Dellon last year.. He was trying to get rid of ischial tube sit bone pain, but sadly caused a new issue.
This issue keeps me from sitting driving and living a normal life.So thats the main pain issue Im looking to relieve.The catch 22 is the problems that oral meds cause..
Tho Ive been on Methadone for 9 mos with little to no relief..Am getting off it gradually now.. and awaiting on my doc to work with a compounding pharmacist to help come up with an anal/ rectal combo suppository to help with both my problems.

Thanks for all the work you do to promote awareness of PNE and pelvic pain in general. In the 6 years Ive been ill its just shocking how little the docs know about pelvic pain and how to treat it... hopefully that will change due to great folks like you... let me know if I can help.
Best of luck to you in getting relief..Pls let know if you know anything about Pulsed radio frequency as I have a doc who would probably be willing to try it..Just wondering if Im agood candidate...Thx!
Kathy