Health Organization for Pudendal Education

Kathyd,
Dr Marvel performed left TG surgery to release my nerve from the tight compression of the two main ligament SS and ST. He also cut the SS durung surgery and I have pelvic alignment issues and the rectal pain. Right now and for the past few months the alignment issue is presenting as pubic bone pain especially as I get close to my next PT appointment although it may have been avoided had I not cancelled to to fly out of town for my brother's funeral services. Also who knows what causes the rotation of the pelvis but my stay out of town standing for hours thurs night etc are certainly a strenous and differrent routine and I have not done my exercises as much. As for meds I listed most already I have been on amitriptyline for years for my chronic foot pain before PNE and not if that helps at all but thought I would note it since it helps others, it eliminated the shooting nerve pain from my big toes. Besides meds I go to chiropractor, acupuncture, psychologist, and PT. PT does internal rectal therapy that really helps but can flare if they go too deep so once they firgured that out is is one of the best reliefs for the rectal pain. The details on the ointment that I use vaginally 4 times a day and has helped the rectal pain are:
2.5% Amytriptyline
2.5% Baclofen
2.5% Neurontin
5% Lidocaine
0.05% estridiol
I also had to cancel my appointment with the psychologist who will have his hands full trying to me deal with the loss of my brother. Take care and if I think of anything else or you have futher questions we can continue at my next time on the forum
Take care and best of luck.
Janet

Hi Janet
I have been offline for awhile and just saw your reply. I am so sorry for your loss.. I will keep you in my prayers..
It was very kind of you to post your meds etcs at this tough time for you.. I hope that speaking with your phsychologist will be a comfort to you..

May I ask is your rectal pain the burning kinds (sounds like it is ) or throbbling.?

My pain in different than many in that is has always been like an incredible throbbing or toothache, first in sit bones and then after peripheral nerve surgery, (about 3 most later) pain moved to a worse spot the rectal opening on right, making it hard for me to sit in any way that the anal area touches ...it also hurts when standing and walking which it didnt pre --surgery.

My docs don't seem to have much idea how to treat this type of pain... I am on methadone but it hasn't done much and we are on the verge of changing it

My main pelvic pain doc stopped practicing due to personal reasons and Im now working with her partner who is getting to know me.. She is not as experienced with the pain meds as my doc was, ...and the pain doc they referred me to has been quite cold, disinterested and oblivious to the amount of pain I am in, so my doc and I will be working on changing the meds ...meanwhile I am trying to find a better pain doc.. and am working with other docs trying to get to the root of my issue which may not be PN...
hope to find out as have been searching a long time
I see so many meds that folks are on that have not been offered to me. I have had much pt over the years, this past year with a well know PT, but it didn't seem to do much
This past time I gave it several months buts saw no change.
These ointments you listed do they help with throbbing pain..?

I have heard some good things about lyrica and and may try that.. still thinking about that
Meanwhile thx for any questions you can answer when you can and my best wishes and regards
to you
Kathy

Kathy,
Thanks for the condolences and prayers, it helps and the psychologist. As everryone knows time will help and I just need to get back to normal stuff and trying to be part of the holidays as it is hard to ignore. My pain of course is escalated and work was a real challenge as well as chasing my arthritis medicine around to get a refill. Anyway back to your questions not sure how to explain the rectal pain but probably closer to throbbing than burning and a lot of timesit feels like pulling I guess causes it? Like you walk and take a long stride it would yank on it and stretch it but I am not really taking a long stretch. Mine is all three sit stand and walk. Yes the ointment helps but dooes not totally mask out the pain. So sorry to hear about the pain doc changes. I have a similar thing but not as bad. My pain guy wants to stop doing the pain stuff and just do musclskeletal but he will do as as he has just not new pain stuff for me. He cannot keep up and took this extra role when there were no pain guys back 25 years ago. He did give me a referral and I trust that will be someone good, maybe after the new year since I am not in dire need just keeping a look out for anything new - aren't we all? I hope I covered everything and if not, please ask again or anything else and I will do my best. Good luck and let us know how things go for you.
Janet

Anne,
You should look into the twin cheeks pillow at cushionyourassets.com. It has definitely helped me on many many plane rides. It's fully adaptable to your own personal needs. Trudy, the owner, has PN and has had surgery with Dr. Hibner, so she knows what our needs are. You can contact her on the website under contact us and she can answer any questions you might have. Good luck! Let me know if it works for you!

I use several tricks when I travel. I have my medication mix in my purse. Take one portion before leaving home.

If I travel by car I take gelatine ice with me and sit on it. Recline chair while my husband is driving. If hotel has freezer I take several gelatine ice packs to alternate.

Otherwise I take zip bags. I fill them in in airport McDonalds or ask flight attendant for ice. Fill them in in hotel.

Recently there are 20 or so dollars more expensive sits with more leg space on Delta and Spirit. We cannot afford luxury seats but this is affordable.

I put my legs on my purse or backpack to remove some pressure.

I hope it works for others

Helen

Hi Anne,

We went to Sharm at the beginning of December, was really nervous as it was my first trip since surgery

We like Helen purchased extra leg room only 30 pounds extra each, each way, it was a godsend as the flight was not full also had an extra seat between us, made the journey very manageble. This was Monarch airlines, but of a faff having to travel to Gatwich but has certainlyy opened up opportunities for us re holidays.

Regards,

Molly