pudendal pain

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stephanies
Posts: 683
Joined: Mon Oct 25, 2010 3:07 am

Re: pudendal pain

Post by stephanies »

Thank you Lara. I think they are starting me at 12 but said that I can increase or continue taking the morphne sulfate er with it maybe. I really don't want to add to my medications but I am getting more depressed and desperate. I am afraid of the meds stopping working as well. I started on Wellbutrin last week and had 3 blissful days of virtually no pain, but of course, it all came back once my body started to get used to the drug. I work 2 days a week and I have a middle schooler who has to be driven and picked up from school a good distance from home and then taken to athletic practices, music lessons, etc. and I find by evening my pain is awful and the result is that my patience is short. I know I need something for pain control but I know the process of coming off the drugs is difficult although my doc always tells me how easy it is. I guess she has never had to do it.

Thanks again,
Stephanies
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
openup
Posts: 8
Joined: Wed May 29, 2013 8:40 pm

Re: pudendal pain

Post by openup »

Linda,

Dr Hibner has such an amazing team, a PT expert, Loretta, who is an Expert in PN. I see his partner, Dr Mario Castellanos and he also is an amazing Dr. They, as a team, have team meetings and consult each other on the cases they are treating. I cannot say enough about his practice. Since many patients come in from out of town, their office DOES HELP to coordinate your day's schedule if need to see a Pain Clinc, Loretta, and Dr Hibner all in one day. I do need to disclose that their schedule-r's are NOT the most prompt people and you absolutely do need to call them many times a day and even speak to their managers so that YOU get a question/schedule request/insurance question taken care of pronto. Don't take that as a negative, just that their office helps sooo many patients that I feel they need our help keeping them on task.


I too must use Percocet and 12 SR OxyContin meds and Lyrica so don't ever feel ashamed of what it takes for us PN sufferers to attempt at a "regular" day. Remember, today is not tomorrow and tomorrow is not today! 70 yrs old is Young! Each and every one of us deserves to feel better and healthy. Back to Dr Hibner, his life's work IS PN AND PNE! I'm so glad that I am in this town where I can take a drive and be in their office. He is always training, keeping an ear to the ground as to what's the next big thing, sending their radiologist specialist to go learn, in a diff country,the RFA to the PN as an alternative/option as well,that he is making it possible for those of us with this condition.

I am sending you good wishes and prayers for your health and happiness.

"Openup"
PNE dx August 2012
CT guide PN block Sept 2012 moderate relief 8 days, CT repeat Nov 2012 no improvement
U/S guide PN block Jan 2012 no improvement. Continual PT 5 mos. with minimal improvements
PFCN U/S block Jun 2013 no improvement of PNE symptoms.
SURGERY COVERAGE DENIED BY UNITED HEALTHCARE
Laproscopic Pelvic "Lysis of adhesions" to get at scar tissue around PN Nov 2013
PFM dx by Loretta Nov 2012. Continual persistent pain Post Hip Replacement 2008
Laramarie

Re: pudendal pain

Post by Laramarie »

Stephanies
Starting at 12meq is a good idea. My pain management doc offered me either 12 or 25 and I took the 25 because I felt the 25 would target my pain better. This was pre op so I was pretty bad. My pain dropped about 30-40% right away with the fentanyl! So after about 6 weeks my doctor and I decided to increase the dose for optimal pain relief to try to get myself even more pain free. So with a 25 and a 12 patch on, my pain got even better! That's why we opted to go even higher to the 50 patch but it was way too high for my body! So back down I went.
Fentanyl really targeted my severe rectal pain. I always suffered with the "foreign body" type rectal pain and muscle spasm pain and the fentanyl worked wonders for me. Sadly my body got used to it and it stopped working.
I hope it will benefit you and give you some relief!

Lara
Laramarie

Re: pudendal pain

Post by Laramarie »

Stephanies
Just a note:
I also have children (four kids) and I was able to drive on the fentanyl, even on the 37.5 dose. You will know when you are on the right dose. (Relatively pain free but not dizzy and tired).

Take care

Lara
stephanies
Posts: 683
Joined: Mon Oct 25, 2010 3:07 am

Re: pudendal pain

Post by stephanies »

Thank you Lara. I will probably try the 12 beginning this weekend.
PN started 2004 from fall. Surgery with Filler Nov. 2006, Dr. Campbell April 2007. Pain decreased by 85% in 2008 (rectal and sitting pain resolved completely), pain returned in 12/13. Pain reduced significantly beginning around 11/23.
theresa
Posts: 12
Joined: Tue Nov 09, 2010 9:45 pm

Re: pudendal pain

Post by theresa »

Hi Lara,

You responded to my inquiry on taking prescription pain meds. pre op. Could you share with me if you are still taking them post-op. I am so anxious as most are I am sure. But when I was younger I was strong, I know I would have never doubted I was making the right decision. It is so much harder to kick back from any illness with age. The nurse teases me about coming to a nursing home to give me my injections some day. She is the kindest of all to me, and makes me laugh . She very much wants me to proceed. Other then the pain of course, the thing I hate most of all is taking all those pills. Hope you are tip top and having a good day.
Laramarie

Re: pudendal pain

Post by Laramarie »

Hi Theresa
Yes I still have to take some pain killers post op but I plan on going off of them in 2 weeks. I am having lidocaine infusions to help with my pain and my doc is hopeful that I will be able to stop the rest of my meds. Have you been able to make an appointment with Dr Hibner yet?
Don't worry about having to take medications.... I have been on pain medications for 3 years now. Don't beat yourself up over it! Nerve pain is so severe! Have you tried any of the suppositories yet? They help also..... What about Lyrica or GABA? Lyrica helped me a great deal pre op. They both have side effects but all medications do.

Hope you are well today.

Take care!
Lara
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