Health Organization for Pudendal Education

I've heard of inguinal hernias causing pain similar to PNE and also that they can be misdiagnosed. But I've also heard of people having unnecessary hernia repair surgeries for "hidden" hernias. Seems to be another one of those mystery illnesses that can be misdiagnosed.

Good luck with your nerve blocks.


Violet

Thanks Vilolet. I will update after I get them. The gabapenitin seems to have run it's course also so I am slowly weaning myself off it to see what happens. All it has done has made me sluggish and seem off balance sometimes..lol. I will take tramadol as needed I guess and continue with my PT next weekend.

cheers
Jim

What about something like cymbalta Jim, or are you trying to stay away as much as possible from medication. I know it works as well as anything has for me .
Take care,
Helen

Helen, I am weaning myself off of the gabapentin since it has been doing me no good. I am actually less sluggish without it and I am down to 300MGS a day. I am stepping this stuff down slowly since I do not want to go cold turkey bonkers..lol! When i go get my next set of nerve blocks next week I will ask Dr. C about cymbalta or just try and get more tramadol and take as needed. I seem to be coping better by lowering the self stress and the jabbing is there like a long lost friend but I try to just ignore it now. I went back to the derm one more time today just to check that box again. No superficial skin disorder to be noted so this thing has to be nerve related. I got more PT and it still helps and I will update after the next set of blocks.

cheers
Jim

I really think that you are doing totally the right thing slowly lowering the gabapentin dose, especially when it hasn't been that successful (same with me) Crazy Hey Bonkers can happen lol, so at least you have that covered too.
It sometimes takes a couple of weeks for the cymbalta to take effect but if I were you, because things are improving for you and/or you are getting a better handle on the whole thing, maybe wait till post next injection? You never know it might not even be needed. Just a thought. If you are 'screaming' with the pain obviously I wouldn't say that. I realise that medication is very good and very necessary especially in the early stages of a nerve/muscle problem as an often escalating problem can be halted.
My brother in law had a knee problem for a while and he referred to his pain as a friend I thought that very strange at the time. Now I can see that this thing does become such a part of you if you can 'own' it and adapt that mindset, it does make life a little easier. Maybe that should be taught in cognitive therapies, think you may be on to something there See, have 'owned mine and feel better allready Being trite there, but I do think there is some merit in the 'friending'.
take care,
Helen

Hello all! It has been awhile since I have been on this forum and it seems my problem all along has been skin related. Dr. Castellanos had to drop me as a patient since he could not work on men anymore and I have been totally off of Gabapentin for 2 months. It looks like I had a real bad case of dry skin (ezcema)and I kept re-injuring the skin in the inner thighs (currently wearing comprssion pants until this heals). PT was good for me but I have been off of that for a year now. Sexual function, sitting and bathroom issues are all fine and good to go. I wish everybody great health and I pray for everyone.

thanks
Jim

Hi Jim,

Thanks for reporting back. It's good to hear that you have figured out the cause of your problems and what to do about it. Thanks for your prayers. As you know we need them around here!

Violet

Violet, thanks for responding and your support. It seems my skin is the primary issue but sitting is still an issue. It seems my wearing of comprssion shorts did not agree with my groin area leaving what felt like seem marks in my skin...lol. I have been protecting an area on my inner thigh because it was chafing but my protective measures were just killing me to the point that I took 2 days off from work. The Arizona heat does not help my situation much either. So now I am back to just lubing up and covering with powder and see where it goes from here. This is still a day to day struggle but all you can do is manage and just do your best. It seems it is mind over matter and the rest just does not matter.

Jim

Hey Jim,

It sounds like you are sort of in limbo with Dr. Castellanos not treating men anymore. Do you have any good docs who are helping you out now?

Just drove through CA and AZ and the temp was 110 degrees! I can see why that would aggravate skin issues.

Violet

Hi Violet. It seems things are getting worse for me. I had to go to the ER yesterday for severe gluteal and buttock and the normal inner thigh pain. Of course they could not do much for me except give me a low dose of gabapentin at twice a day at 300mgs. I was on more than that 2 years ago. This recent flare is killing me. Cant lay down more than 20 minutes and sitting long really messes me up with my buttocks and gluts killing me. I even broke down in front of my lovely wife and son. Putting on a brave front only lasts so long. Sleep was impossible for the last 4 days, I finally got some rest in my recliner being knocked out with a vicadin which gave me a headache...lol, but it worked. The stress has been just to much I guess. I burned 2 sick days to stay home and we have a 2 week road trip planned later this month, not sure if that is going to happen. So today I am at home watching golf on the recliner and trapped like a prisoner..lol. So here is my question. Castellanos originally told me that he thought that the obturator or genitofemoral nerve were my problems but my recent issues could have been the pudendal all along, not sure. My recent symptoms are gluteal/buttock pain when sitting and laying down, chaffing sensations all over the inner thigh when walking. Bowel movements, urinary issues, standing and sex are all good to go, so this thing is a mixed bag of tricks. This has been tough but I have to soldier on I guess. So I am going to try and pursue PT again and seek another neurologist. Exercise helped me through my last flare up but this time I am a bit hesitant to push things. So it seems I am back where I started (an old Kinks song by the way). So where do I go from here. Who knows, I try to fight off the depression but what else can one do. Any thoughts or ideas from you kind souls would greatly be appreciated. Prayers and hope to all. Update: something weird, the underside of my penis looks like rug burn but does not hurt. Brown skin too. What the hell is going on.


Thanks
Jim in AZ