Health Organization for Pudendal Education

Hello,

My wife has been diagnosed with PN and possible PNE by Dr. Castellanos in Phoenix. It started nearly a year ago while she was driving, just as random pelvic pain, and has become worse since then. We're fortunate enough to live in Phoenix so we're able to see Dr. Castellanos easily, but things aren't looking good right now.

Her pain has increased to the point where she's not able to do much walking/standing beyond going to and from the bathroom, and sitting is totally out (she has a special cushion seat which helped before things got worse). As such, she's pretty much stuck in bed for the time being. I've gone on an indefinite leave of absence from work to stay home and take care of her until we can get this sorted out.

She's had several pudendal nerve blocks (with steroids) which give her 100% relief, but only for about two days each. She's had two MRIs, along with RFA and Botox, and was doing PT until her pain got too bad to be able to sit. We're going to try a ganglion impar block in about a week to see if that does anything different, and the next step after that is surgery for possible PNE. It'll be great if that helps, but we've been told recovery can take up to a year so we're not looking forward to that possibility.

Our biggest frustration right now is lack of pain management. We've been seeing a pain management clinic, but even since her pain has increased, they haven't been willing to do anything significant enough to give her relief. She was originally on 5mg hydrocodone 3x/day starting late last year, and they did help significantly (switching with oxycodone every two months or so). Now, with her increased pain, they've moved her to 15mg morphine 2x/day plus 5mg oxycodone 2x/day as needed, but it's still not enough to make a dent big enough to get her out of bed without wanting to cry. She's also on Cymbalta and Lyrica - we tried Gabapentin but she had undesirable side effects at fairly low doses. Even getting that increase took several visits over the course of a month, which is difficult because going anywhere involves standing, sitting, and walking, of course. We're kind of resigned to not getting any additional relief at this point - everyone is so spooked about prescribing things now, even when we're willing to jump through all of their hoops. We also understand that they want a longer term solution, which we're working on and have scheduled, but that doesn't help us right now. We're looking into finding a house call doctor this week that might be willing to take over her pain management and do something more significant for her, solving two issues in one (no painful ride in the car, and hopefully less pain until the surgery).

That's the story - I'll probably keep it updated as we continue along. If anyone has recommendations for pain management in Phoenix that might be more helpful, I'd appreciate it.

Can't they prescribe Butrans (buprenorphine) patches? They worked great for me and around the clock. You replace the patch after 7 days. They also present virtually no risk for abuse (full agonist).

I can't believe they are not more popular in the US (originally from the UK).

We did ask about some sort of patch like fentanyl (I had read that other people experienced significant relief with it), but the current group doesn't seem to consider it an option. Their concern is that being in AZ, the patches don't work well and fall off because they get sweaty, etc. - but considering she doesn't leave the house and can't even leave bed for more than a minute right now, I don't think that's going to be an issue in our situation. I can ask about Butrans, it seems similar though so I'm guessing they'll have the same reservations.

I think we need to find a new pain clinic, we're waiting until after her nerve block next week because they're the ones doing it and we don't want to jeopardize relations before the block happens. Obviously our hope long-term is that the PNE surgery will make a difference, but that could be another month or so out and every day is fairly agonizing in the meantime.

Fentanyl patches are reservoir based. They can potentially be dangerous if damaged. Fentanyl is also much more addictive. Butrans is matrix based and is not dangerous even if punctured (just like a nicotine patch).

Butrans is less addictive and I even used the patches swimming in the ocean. They stick to the skin perfectly in all circumstances.

Oral buprenorphine (suboxone) can only be prescribed by trained physicians but not the patches. Any doctor can prescribe Butrans but some physicians are confused.

Oral suboxone is used mostly for detox so it is why proper training is required. Butrans however is strictly for pain management.

I think those guys are either lazy or incompetent. Or both.

rbzl,

I'm sorry to hear about your wife. It sounds difficult. Has she tried ice? I put 6-8 ice cubes in a ziplock bag and wrap it a wet paper towel (only a single layer so it is very cold), and I stick that in my underwear and replace it when it melts). On bad days, I wear it all day long and at night, and on better days, I put it in in the evenings only. This usually shuts down the pain. It isn't practical when I'm out of the house, but since she is staying home anyway, she could do this around the clock.

April

April wrote:rbzl,

I'm sorry to hear about your wife. It sounds difficult. Has she tried ice? I put 6-8 ice cubes in a ziplock bag and wrap it a wet paper towel (only a single layer so it is very cold), and I stick that in my underwear and replace it when it melts). On bad days, I wear it all day long and at night, and on better days, I put it in in the evenings only. This usually shuts down the pain. It isn't practical when I'm out of the house, but since she is staying home anyway, she could do this around the clock.

April

Yes, she was over-icing it at first - Dr. Castellanos' nurse told her to cut back and only use ice 4 times a day at 15-20 minutes each. It did help a bit, but she doesn't use the ice much now - she says nothing is really helping at this point, aside from the pain meds which help maybe 1-1.5 points.

nonsequitur wrote:Fentanyl patches are reservoir based. They can potentially be dangerous if damaged. Fentanyl is also much more addictive. Butrans is matrix based and is not dangerous even if punctured (just like a nicotine patch).

Butrans is less addictive and I even used the patches swimming in the ocean. They stick to the skin perfectly in all circumstances.

Oral buprenorphine (suboxone) can only be prescribed by trained physicians but not the patches. Any doctor can prescribe Butrans but some physicians are confused.

Oral suboxone is used mostly for detox so it is why proper training is required. Butrans however is strictly for pain management.

I think those guys are either lazy or incompetent. Or both.

I'll definitely ask about the Butrans patches then. Next appointment is just over a week from now, after the next nerve block, so if they aren't willing to make a significant change we'll talk to them about what we need to do to move to a different pain center. Her biggest concern is that she'll tick them off somehow and get "blacklisted" when we're just trying to get enough pain relief for her to be able to walk around the house on her own.

We ended up going back to the pain center Wednesday because the topical cream was causing issues. At this point they're not willing to make any other medication adjustments. It doesn't make any sense - any time we talk to them about how the pain is around the clock, standing and walking is hell and sitting is impossible, they make slight variations on pretty much the same thing you'd get to have your wisdom teeth out... their reasoning is that they want to see a long-term fix, which we would love as well. We have the procedures that are supposed to do that scheduled at the soonest possible date. That doesn't seem to matter to them. I talked to them about finding new pain management as we're not happy with what they can do, and there should be no problem with that as long as we let everyone involved know.

I'm optimistic because I found what appears to be a good house call group - they deal as PCPs, as well as having access to all sorts of specialists and handling pain management. When talking to them yesterday, they were very friendly and helpful, even offering to send someone out to help with paperwork if needed. I'll probably follow up with them today.

I am sorry that your wife suffers with this issue. It is hell on earth. Its good that she has you for support. You will both need to be strong for each other. I hope her injury settles & you both find a good resolution for the condition. I wish you both good luck.

rbzl, Good luck with a better pain management practice. My pain doctor was wonderful and willing to try my suggestions.

By procedure for your wife soon, do you mean PNE surgery? Was her PNE the result of a prior surgery or an accident? Or it just happened one day? Please realize that PNE surgery is not the answer for everyone --to put it mildly. I know it quite well, I had 2 unsuccessful decompression surgeries.

If you go on the massive Facebook Pudendal forum you will realize that the outcome from Dr. Castellano's or Dr. Hibner's PNE surgery is really not that great.

It is so upsetting that to see that people have to beg for pain relief with this condition. The urogynecologist I went to who was supposedly the expert left me suffering and suicudal. All she did was call my PCP concerned I was going to kill myself. She's was the expert how the hell is my family doc supposed to know about this condition. I'm sorry to read about your wife. Please ask for some Bella Donna and opium suppositories. Ridiculously expensive but if used vaginally and rectally may offer her some relief.