Travel advice and hi

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.

Travel advice and hi

Postby BridgetS » Wed Jun 28, 2017 9:46 am

Hi,

New on here. I have read quite a lot of posts on the forums. Feel for you. This is a horrible condition. It's not a fun one to try to explain either!

Briefly, mine started 3 years ago after a car journey. I'd had some itching beforehand but the pain began in earnest going for a walk. It was initially misdiagnosed as a thrombosed haemorrhoid. The doctors would not shift from that diagnosis for a long time. I even went through an extremely uncomfortable examination with a private specialist who couldn't actually find such a thing there but still didn't seem to know what was wrong. I am certain that mine was caused by custom orthotics I had had made for dropped arches in my feet. It seemed to change my posture and cause some kind of aggravation, but because it was initially misdiagnosed it took me a long time to realise that and get rid of the custom orthotics that seemed to be the cause of it. I have experimented with different kinds of orthotics since then and without them and found the best ones that I can manage with, but I'm not finding any of it easy. I wonder if anyone else has had this kind of experience with orthotics? I couldn't find anything much about them on the forums.

I eventually figured out it must be PN myself from endless googling. My osteopath seems to think I am right and eventually I have found Doctor who agrees and put me on gabapentin. I cannot take more than 200 mg of this without feeling very queasy, so it is not providing any pain relief. I will go back to her shortly to ask for a change of medication.

I am currently very upset because after 3 years of not going on holiday I had tried to arrange one which I thought was in travelling distance, but current flareup is making me feel even that is impossible. If honest, that has really depressed me and I have been crying a lot the last couple of days. I'm wondering if anyone can give me sensible advice on how to make a car journey of about 2 1/2 hours? Maybe it's silly to even try. I'm thinking that probably is the case, but it is difficult to deal mentally with the disappointment. I have ordered a cushion with the sit bone area cutout. Are these any good? I have never tried one before. I was thinking of stopping frequently to move around during the journey and avoiding motorways so that I could get out and move about when I wanted to but I'm still worried it's going to make this flareup worse, especially as it's moved into areas it wasn't in previously. I've booked an appointment with the osteopath today to get advice from her. Clearly people travel to appointments and things like that on here, which seem quite far afield, so I'm wondering how you do it?

I probably will have to pull out of the holiday, but if anyone does have any sensible suggestions that could help me to get there I would be hugely grateful.

Thank you.
BridgetS
 
Posts: 4
Joined: Tue Feb 28, 2017 12:00 pm

Re: Travel advice and hi

Postby janetm2 » Wed Jun 28, 2017 2:29 pm

Hi Bridget,
Welcome and hope your osteo can help. Since you are having problems with a low dose of gabapentin maybe you can try Lyrica. I use orthotics but have not seen them as a problem. I use a turgo airgo cushion for sitting in the car but did not travel far with flare-ups. I sympathize with the inability to travel as I missed my nephew's college graduation and niece's high school after my surgery. I do take tramadol 50 mg an hour before activities, travel or extra sitting to help me through. Some people lay down in the back seat of the car. The frequently stopping will help. Wishing you the best! Hang in there.
Janet
2007-08 pelvic muscles spasms (per colon-rectal dr.) treated by ElectroGalvanicStimulis(EGS). 6/27/10 sat too long on a hard chair- spasms, EGS not work Botox help, spine pain dr cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain started/surgery at age 21. TG gave me back enough sitting to keep my job and join in some social activities. I wish the best to everyone!
janetm2
 
Posts: 947
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: Travel advice and hi

Postby Violet M » Mon Jul 03, 2017 12:57 am

For many years I laid in the back seat of the car to travel.

Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
User avatar
Violet M
 
Posts: 5467
Joined: Mon Sep 06, 2010 6:04 am
Location: United States

Re: Travel advice and hi

Postby BridgetS » Tue Jul 04, 2017 9:19 am

Dear Janet and Violet

Thank you both so much for taking the time to reply. I think you are both right about lying down in the back and I may well have to do some of that. Thanks also to Janet for the medication and cushion advice.

Regards

Bridget
BridgetS
 
Posts: 4
Joined: Tue Feb 28, 2017 12:00 pm


Return to WELCOME CENTER

Who is online

Users browsing this forum: No registered users and 3 guests