Health Organization for Pudendal Education

river, pain relief is key and I think you are absolutely right to pursue the pain pump route.
I regret many things I did during my PN journey but there is one thing that I don't: Having switched from ineffective (for me at least) anti-convulsant types of drugs to opioids. Opioids offered me decent pain relief and even if it was a bit hard to taper off, it was worth it.

I certainly am looking forward to discontinuing the 3,000 mg.of gabapentine. I am back on a small dose of opiots. It does help some. Feels strange after being off of them for a year. It makes my heart smile that your pain is gone . Did you do a lot of exercising?

I mostly walked. 3-4 miles/day 4 times a week. I started in mid 2013 but then I had a tough time doing it when I was tapering off Suboxone. I restarted as soon as I was over the post-withdrawal period. It helped also mentally.

It has been very difficult to walk as much as I did previously. My balance is off. I walked an hour a day no matter what the weather here in Mn. I am determined to get back to it. Did you walk no matter what your pain level was? I lost my sweet spaniel I walked with, It saddened me so I have a hard time getting back . The pain is worse now ,which also makes it difficult. I have work to do. I had a total knee replacement ,and the muscles are still weak in that leg..

Dear river,

I've been an intermittent walker, just started again recently hoping to lose some weight and lower BP before pending shoulder surgery. Fully understand about needing your dog for company. Lost my golden lab/retriever mix her a few years ago and haven't replaced her or the cat - miss that unconditional love and their intuition about when you're really hurting. Walking really increases the vulvar pain (friction) when it's acting up, but reduces the sacral and sometimes vaginal wall, so it's a toss-up. Overall it's good for me so I try to do it despite the pain - ice afterward.

Is the pump causing the balance issues (you're having leg numbness, right?). Trying to remember everyone's specifics. Maybe a treadmill or elliptical would be safer with the handles (and not having to treak home if the leg has a problem). I live in a rural canyon, have to get up a steep hill and climb to the house if I venture below my street, which also has a moderate hill. I just repeat the 1/4 mile loops below my house as tolerated; should borrow a neighbor's dog for inspiration. I'm so glad your pain is better; following your pump results with great interest, maybe someday I'll do a trial. I need to visit my aunts & cousins in MN, haven't seen them in years due to severe PN pain with travel. Hope each day is better than the one before!

river133 wrote:Violet, _what is your concern with the itching. I may be itching for a long time with the pump?

Just in case you might be allergic to the drugs. It's always important to report any side effects to your physician but if they aren't concerned about it that's good. Hopefully your body will adjust and you will be fine but if not, you might need to try other drugs.

Violet

Hi everyone, it has been a crazy couple of weeks, my dad had his knee replaced with some complications, so the ladies of the house went up to Maine to visit and take some of the load off of my mom. So for right now it's just me and the dog.

I have been going to the pain clinic every 2-3 weeks for increases to the pump, usually it is a 20-25% jump. Still 100% bupivicane 10mg/ml with nothing else in the pump. I am up to 3mg a day now on the constant infusion settings. My first refill is on August 3rd, and I think we will stay with just bupivacaine.

Getting off the pain meds has been actually really easy, in two months I have been able to completely stop the (6) oxycodone 15mg and switch it to hydrocodone/APAP 10/325. I am taking 4 a day of those and 2 Mscontin 30mg a day from three initially.

I think the thing to emphasize here is that the pump is taking up the slack of the pain meds, and the goal is to not be in pain with as little meds as needed.

Using this chart I was at a opiate score of 180 units, of narcotic pain meds, a day. I am now down to 100 units with a lot less pain. that comes out to a 55% reduction sin two months.

https://en.wikipedia.org/wiki/Equianalgesic

I reduce the pain meds by 10% a week. I am not trying to tough it out, if I am in pain I take something, if reduce the amount a step too far I go back up on the dosage.
And wait for another visit to the pain clinic before taking another step. This is a war not a battle and it is going to move slowly over many small victories, as long as I am heading in the right direction I am happy, and so is the pain clinic. According to them, I am coming off of the meds really fast, so I take that as good news.

As for sitting, I cant really tolerate it any more than before, but the symptoms are not as severe. Driving is a little more comfortable for short trips but I still can't do it every day.

The hypersensitivity is somewhat better and the flareups don't last as long anymore, also having the bolus button on the remote is a big help if the pain increases.

The only side effect of all of this is a occasional dead foot where I start to limp once in a while when I need to use the bolus a lot. But I will take that over the pain.

As always feel free to PM me or ask a question.

Thanks

Carl

Hey Carl,

Sounds like you are taking a very common sense approach to cutting back on your meds slowly. It's good to hear you are making progress and I wish you all the best in trying to cut back on the oral medications even more.

Violet

Dear Carl,

So pleased to see your ongoing progress; it gives me hope if I get to that point (some days I'm ready for a trial). Can I ask which brand/model pump was implanted?

It's great that the bupivicaine is letting you decrease narcotics. I'm trying to reduce mine a little due to upcoming unrelated surgery. Would love another 5-day ketamine infusion - fantastic pain reduction for 2 months (postop Dr. Hibner pain plus places that can't be fixed). Continued best wishes! quilter

OK, just finished my one chore of the day! I never thought that one hour of work around the house a day would sound productive but it is better than being totally bed ridden. Mornings are best for me typically.

For an update when I was last with Dr. Ross he slowed down the rate of infusion for the bolus from 60 sec to 120. The change is supposed to keep the meds for traveling as far. That has made a big difference in the deadfoot feeling.

Using the bolus while laying down affect my rump area and around the inner thigh, but with the change it has had another effect that if I use the bolus several times in the night, 12PM and 4AM for example, I wake up with my left genitals seriously numb. This is actually good as it deadens the pain and helps with PGA. I don't want that feeling all of the time, but it is turning into a tool to use on bad days.