Health Organization for Pudendal Education

Pleased that there is some good news for you both. Thanks for taking the time to let everyone know Cora.
Take care,
Helen

Thanks Cora for continuing to share your story. Hope things are going well for your husband. What a stressful time this must have been for you both!

I am really interested to hear that your centralized pain seems to be better after 7 years. That is very encouraging to me as I feel like the central sensitization is a huge issue for me (I've recently developed breast sensitivity - as I mentioned in a post recently). I read the beginning of this thread which dated back to Jan 2011 and I am basically still on the same meds I was then! My pain is not well controlled and I know I need to switch things up/try new things, but I can't seem to find a doctor who will help me do that I am not interested in surgery so I am going to have to try to manage this beast with meds until something else better comes along. You mentioned you started to have some hyperalgesia...what exactly did that feel like? This is one of the main reasons my pelvic pain doc doesn't want me to get on narcotics until I've really exhausted all my non-narcotic options (which I really have).

I get some relief with Tramadol so I guess this is what I should start taking first if I'm ready to start using narcotics for pain? Suboxone is only to help you get off narcotics, right? Or can you use that as a first line option for pain relief. I am in the hunt for a good pain management doctor to help me with this central sensitization but in the meantime....I continue to be my own doctor.

Thanks for your input.

Kath and Faith, One thing you could do Kath is ask your doctor to refer you to a doctor who specializes in Bupenorphine/ Suboxone. It's labeled use is for opioid dependence but they will prescribe it for pain. Maybe if you took the tabs sublingually like I did ( film did not work for me Sl) you might get better relief. You can increase the dose to the dose that works for you and take it in tiny doses 4 times a day if you wish. It's just that you have to go to a licensed suboxone dr. Since you are not an addict, I'd ask for the bupenorphine ( Subutex) only. It's cheaper too by a lot. As for the centralized pain I credit it to 2 things. Finally getting good pain control for a long time and then avoiding triggers/ and doing tai chi. I think if you can find a combination of things that truly down regulate the intensity of your autonomic nervous system it can really really help. It's taken over 4 years of practice and avoidance to tamp it down.
All my best,
Cora

Hi Cora,
Thanks for the suggestions and Im so glad you are doing well. Hope all is well with your hubby.
I agree with you so much regarding gettng the autonomic nervous system to calm down. I have been chasing down my issues for 5and 1/2 years and have had pain increases with various treatments.
I am soo incredibly scared that I will not be able to get relief... that my fear is feeding the whole cycle.
Hi Cora,
I have a question about the Bupenorphine/subutex.
My pelvic pain gyn had me on the Butrans pactch transdermal systemfor a couple months.. As far as I could tell there was no postive change from the med. This patch is a form of Buepnorphine.
As you suggested, could it possible that taking the bupenorpine /subutex sublingually would work differently and have the potential to help even if the Burtrans patch didn't?.Im guessimg my doc isn't licensed to dispense this version of the med. but i will mention it to her again, as we are trying to find a new pain med. I am 3plus weeks on Nucynta ER with no relief, so am starting the titration down soon..
I want to down regulate my autonomic nervous system, but getting the pain down just a bit would give me the headstart I need...I will ask my doc again about the sublingual use of Buepenorphine..n
I admire your persisitance. Its hard to do when you're in so much pain every moment.
Thanks again!
Kath

Indeed the delivery system could benefit you. I think the best part of it is you have the ability to micro-titrate the doses and see what effect you get. Rather than increasing the size of the patch and once you get to the highest dose of the patch you have nowhere else to go. It's so crazy, of course in Europe the SL bupenorphine is totally prescribed as a pain med. Here as I said, in the mouth it's for opioid dependence and once it's on your skin it's a pain medicine. Another option is to use an oral med like Percocet or Vicodin in conjunction with the patch. Having a full agonist combined with a partial agonist ( I've learned this from a really good doctor) can be a great combination and you might not have big dose escalations. I don't know if that makes sense to you or not.
Turning down the autonomic nervous system is truly a complicated process. Dr. Echenberg on the Institute for Women in Pain site is really focusing a lot on this. I'm sure you know all the tricks. Time and dedication and ironically releasing yourself from trying too hard... can help. For me... it was so gradual and so mixed up with all the side effects from the meds it was the worst puzzle in my life.

Thanks for asking about my hubby. Right now he's good. And that's the thing. All we have is right now.

Be well, keep searching and if you have more detailed questions that you'd rather PM about, I'm trying to check in more these days.

Peace and healing,
Cora

Hi
Just recently noticed your postt and saw that doxepin helped you feel better and gain weight.. hope you are still doing great..
I have been struggling with chronic pain sitting pain, and urinary issues for 6 years and in the past few years the sitt pain increased to pain with standing ..long story and became too painful to drive or sit at all...
Anyway a pain med that I can tolerate and that helps has been elusive as has been finding a good paid doc who works with meds rather than just procedures... the latter has done me more harm than good

I also suffer from depession and weight losss caused by the pain and the changes in diet to accomodate bladder issues when all this started...
Can you tell me more about doxepin??
I feel if I could calm down,get the right med and doc who's knows pain meds.. I would get to a chance to heal. I too am so low weight Im scared to weigh myself...tho I eat fine I can;t gain, due to over worked fast metabolism and being in fear mode

Any info would be appreciated.

best of luck to you and thanks!