Health Organization for Pudendal Education

Kathy, I'm sorry to hear you are having a flare-up right now. I think you are smart to just make one change at a time so you know what works and what doesn't. If you try too many changes at once it's easy to "over-think" things and get confused. Hope your PT can help you get this straightened out.

Violet

Hi Violet
Thx so much for your kind response! I means a lot to me to hear encouraging words.
I'm having a rough couple days of and am so worried..hope to gain back progress Ive made.
Another therapist who knows me well, tells me that my body was thrown into a whirlwind by these changes and will take some time to recover. My pain doctor said that I should be back to baseline pain levels, as soon as he increased my pump meds back to my previous normal dose, but that makes no sense! The CNS must be spinning!

Usually my doc does stick to one change at a time. But taking away those Baclofen/valium supps that I was often able to use in lieu of the opiate Dilaudid
suppositories , and lowering my pump dose etc . were too much at one time.
He gave me a new suppository to cover it ....with 4 meds ( ketamine/ gabapentin/ lidiocaine/valium ).... but the valium in it is only half the amt of muscle relaxant as in the other bac/valium combo I was used to...probably not enough to cover my clenching/spasm etc.
I can also push the button on my pain pump (it sends in more pain medicine, but since it's opiate I am afraid to hit it the 6 times daily he recommends, due to risk of constipation ...( a sensation I get even if I'm not really "backed up". Actually one gets much less opiate into the gastro-intestinal system through a pain pump than, than from using a rectal Diluadid suppository.
But pushing the bolus pump button doesn't give instant results, or any any noticeable change in pain for me . One would have to push it the 6 times daily it allows , ----which would take hours of waiting to to see if it helps.. When in bad pain , you go for the quickest relief!
Dilaudid supps are more instant, but relief doesn't last.

I haven't seen significant changes from new suppository combo yet , probably from the confused state my brain and body are in, from a significant decrease in pain pump med levels and then going back up again the next day etc.

My hubby will call my doc Monday and request my "old protocol again ...which would give me the baclofen/valium supps.
I find that this doctor relates better to men and sadly is condescending to women).
I am looking forward to seeing my PT tomorrow (weather permitting) and getting her take -- as she understands my muscle spasm and clenching,
just as Mod 15 describes so well... unlike the medical folks! It will be hard to explain this to the pain doctor, as he is not living with this pain and is new to pelvic pain in general. They just expect you to follow their orders, but a patient needs to to what works for them in the moment.
I appreciate ur kind words and encouragement!
have a good evening and will keep u posted.
Thx so much!
Kathy

Hi I'm so sorry but I don't know the answer! I've never used a ketamine suppository - my only experience with it was a 3-day infusion! I hope your positive trend continues and I'm sorry the pump hasn't delivered much help for you like it has for me. It just goes to show how different our bodies and our pain illnesses are. I'm sooo glad you are able to participate in things and getting out and about.

Hi Lotta Nerve.
thx for ur response and good wishes!

I'd been active as mentioned and starting to have hope that we are getting somewhere.
Ive continued to take the suppositories with ketamine and realized that last week's bladder flare was prb'ly not the ketamine, just a bad bladder day.
Ive had more hestiancy and tightness, but its been happening along with more rectal pain, since they fiddled with my pump doses earlier this week. I have hesitancy a lot anyway tho...I think the pushing 'to get the pee out' clamps up my rectal muscles and throws things into spasm, as it hurts more after several minutes in the bathroom etc. ..sorry for TMI.
They lowered my pump doses (which were fairly low anyway) and my pain went way up!... then my infusion nurse increased it and nothing has changed in the 4 days since. My PT and another doc think the 2 changes in such close proximity messed things up, and confused my system.
I'm wondering if the pump has malfunctioned but somehow doubt it.They want me to use my bolus but one push of button doesn't help and the 2nd doesn't seem to (unless I lie down) But the whole point is to be able to be active. They allow 6 pushes daily of Bolus but never pushed it that many times due to fears of constipation and or urinary hestiancy... i want to tho!
My pain doc and infursion nurse don't understand pelvic floor issues (how unpredictable things are and how much it hurts and they get frustrated with me, which in turn makes me stressed...vicious cycle.
We're asking my pain doc to put me back on my old protocol of suppositoires I was using up until 5 days ago..praying things will calm down.
The 'new protocol' was done in an effort to me on a new drug, but I should ve left "well enough alone!

He also has a ketamine troche _which is pill that u slip under your tongue.. so tha's a possible choice to try.
But since my PT and I both think this a severe muscle spasm worsened by the stress, worry, and clenching cycle, maybe that's why drugs like this don't work well.
Thanks for your good wishes! Its nice to hear from you.
I would appreciate your and everyone's prayers that I can back on right track soon!
Hope all is well with you!
Kathy

I just had my trial for a pain pump located inside the pudendal canal and not the spine. I have started a detailed post here if you are interested.

http://www.pudendalhope.info/forum/view ... 616#p48775

I you are interested take a look.

I read about your pump trial and will stay tuned! It sounds WONDERFUL!!!

I see a lot of time passed without replies here. I´d like to know if anyone with the pump get better for long term. Just meds cannot keep my pain low anymore, so i really have to try other things to keep me working. It´s so hard to do it with that pain, but all my pudendal way is affected and didn´t find the cause yet. My anus is specially affected, with or without special sitting ways. I´m in a terrible situation. It´s not just a matter of keep myself alive but to keep my job. No other way to feed my family. When block are positive to relief partially the pain, does it mean that i can get that relief each time the pump is active? Why isn´t then it chosen for more people? Are doctors avoiding the pump? Why would they? If anyone have enough knowledge to answer it, i really would appreciate it.

Hello jogom,

I just wrote a long reply about me and my experience, pressed the "submit" button - and it took me to the sign in page. So okay, I signed in again... and when it came bake to this page there was NOT"HING HERE!!!!!

I've had my pump for 5 years in December!! And I've been cherishing every minute of my life that has been restored to me!
My blog explains a lot and tells the story from my perspective.

https://icandpne.wordpress.com/

Please feel free to PM me if you want to exchange email or phone ...

Ok