Health Organization for Pudendal Education

OK, my nightmare is getting worse. I am taking so many narcotics (oxycontin, percocet) that I am having trouble peeing. I sat for 2o minutes this morning trying to pee. Things are going downhill quickly for me. I don't know if I can take care of my kids any longer. Do you think if I called a couple of the docs I could get an earlier appt? I am getting desperate.

cari

Yes, you can always try to get in earlier. I don't know about the other surgeons, but the reason Hibner takes so long is because he only sees new PN patients on Wednesdays and only does one decompression surgery a week on Monday (and not every week of the year) so that is why is wait is so ridiculously long.

Is there anyway you can get someone to pretty much take care of the kids for 2 weeks so you could just lie down and ice the heck out of that nerve all while increasing your neurontin? Then maybe you could come off some of these narcotics. I have retention sometimes when I take valium suppositories and they don't help with my pain very much unfortunately.

PN is a progressive condition, but chances are you are just in a bad flare from traveling to see Potter and all that working you've been trying to do. I on the other hand am afraid my condition is progressing because I am still flared up 5.5 weeks post botox. Maybe after the botox wears off in 2-3 months i'll go back to my pre-botox pain level, but by then I will have to decide if I am having surgery or not!

Cari,

Some of us have found that peeing while showering is easiest. If it happens to you again, just have a quick shower.

Cari,
I was prescribed doxasozin to relax the smooth muscle around my bladder. It definitely helped. It is more commonly used to treat high blood pressure. As Faith said, you are in a bad flare from your trip to NY. If there is any way you can get a break to have a chance to settle down, that would be great. I don't know what the options are for two very young children if you don't have friends or relatives you can ask. When I was 25 years old, I was unemployed and living in an old farm house in the woods with some friends. My sister who was a nurse had to have a shoulder operation that would make it impossible for her to care for my niece and nephew who were 1 year and 21 months. My mother called me and told me since I wasn't busy that I should come home and care for them for 5-6 weeks until my sister recuperated. So that is what I did. I changed their diapers, fed them, played with them and watched soap operas all day. I have read that due to the bad economy that 20 per cent of kids in their 20's are living with their parents. I'm sure that many of them are also unemployed as well. I know that you hate to ask for help but there may be many recent college graduates (often with liberal arts degrees) out there who could come in and help you out during the day for a week or two for minimal compensation. The family medical and leave act gives any family member (like your husband) the right to take time off to care for a family member. Maybe he could take a week of vacation time. If you were in a car wreck, nobody would question this. I know you hate to ask him but you are desperate and marriage is a team sport. As for drugs, many people have found methadone to be more effective for intractable nerve pain. Have you tried Cymbalta yet ? Also good for depression. Maybe you could get over the side effects of Lyrica by slowly increasing the dosage if neurontin is not working. It had a huge effect on my pain within 24 hours. I got the double vision at first but it settled down after a week or two. My heart breaks for you that you are feeling so bad. Hang in there. You will get through all this.

All My Best,

Don

Thank you all for posting.

Faith--is there
any way you can just call Hibner and say you are ready for surgery (if you are)? I hope he doesn't make me go through the whole Botox thing. I'm entrapped, there's nothing that's going to help me except surgery. I"m sorry you are going through this flare with the Botox. A big hug to you. I don't want to see you suffer any more.

Lernica: I will try the shower trick. It's so scary to think I could end up in the ER getting a foley catheter for this.

Don-I hope you are right, it's just a flare. And I finally consented to my husband to get some help with the kids during the week. It saddens me, I always felt so proud that I "ran the household" but can no longer do it all.

Thank you all for following my story and taking the time to add your comments.
xo cari