Hi, all. Newbie here.
I have been getting nowhere with doctors for diagnosis and pain relief and would like your insight on my issue. All comments are welcome and I appreciate the time you give to a response.
I have been having intense pain for the last 17 months. It has changed my life, caused me to leave a job and has drained my family physically, financially and emotionally. The pain is when I sit. It came on suddenly in June 2012 and feels hot and burns to the point where it becomes impossible to stay seated...and I will do absolutely anything to avoid it. It feels like the burning starts at the tuberosity area (bilateral) and then it also extends down the hamstring area on both legs. The only thing that helps is a miracle cushion. There is no burning pain when standing or laying down. When I sit and roll to the side hip, the pain lessens greatly.
Skinny jeans, compression pants and shorts are torture and haven't been worn in a long time. The seams hurt along my inner thighs and the tight, squeezing factor is painful. In a dress with no underwear, or loose pants, I am much better.
Other symptoms: Sometimes my genitals fall asleep, but not often. Though not present at onset, after standing for awhile, or a tough bowel movement, I get pain in my rectum. I do not have vaginal pain with sex or tampons. An internal palpitation of the nerve was uncomfortable but not painful.
Pain meds do not help. Gabapentin and amitriptyline do some, but not enough for anywhere near a normal lifestyle.
My doctors (even those at the nation's top clinics) can't find the cause of my pain or provide significant relief, despite injections, MRIs, MRNs, ultrasounds, PT, EMGs, NCVs, serology, etc. Recently, one doctor mentioned pudendal neuralgia...and so here I am. Based on your experience, is this worth pursuing?
newbie needs help
Re: newbie needs help
Welcome
I am so sorry you have suffered and family so far. Hopefully you can strat getting somewhere through this forum on the road to getting your life back.
unfotunately even the top doctors and clinics maynot know enough about PN and PNE to help you appropriately. This is currently an issue we have. So sad to say you may need to re-try some things to get a diagnosis and appropriate treatment. First is PT by a PN-aware PT (see list off homepage for someone nearby). For meds the two you list are one we try but gabapentin usually needs a high to very high 3600mg per day may be the extreme to be most affective. I only went to 1500mg a day and that is not evenwhat most say is a minimum. If this is nerve related you need to keep trying meds (see the FAQs off the homepage for more options, also there is a letter for doctors you can bring that with the med list to your doctor to get access to try those others. MRI and MRNs do not always shoe PNE and it is only confirmed when they open you up but a PN-aware doctor as listed off homepage can determine if you are a candidate for surgery and give you a good guess at you likelihood of entrapment (the e ofPNE), Via his evaluation, nerve blocks and other info particularly your history. The pn aware PT caught mine entrapment between the two thight main ligaments, the doctor used that, eval, nerve blocks and history (quality of life added in) to say I wss candidate for sugery and confirmed in surgery. best of luck i forgot to say Lyrica has worked better for some than gabapentin.
Janet
I am so sorry you have suffered and family so far. Hopefully you can strat getting somewhere through this forum on the road to getting your life back.
unfotunately even the top doctors and clinics maynot know enough about PN and PNE to help you appropriately. This is currently an issue we have. So sad to say you may need to re-try some things to get a diagnosis and appropriate treatment. First is PT by a PN-aware PT (see list off homepage for someone nearby). For meds the two you list are one we try but gabapentin usually needs a high to very high 3600mg per day may be the extreme to be most affective. I only went to 1500mg a day and that is not evenwhat most say is a minimum. If this is nerve related you need to keep trying meds (see the FAQs off the homepage for more options, also there is a letter for doctors you can bring that with the med list to your doctor to get access to try those others. MRI and MRNs do not always shoe PNE and it is only confirmed when they open you up but a PN-aware doctor as listed off homepage can determine if you are a candidate for surgery and give you a good guess at you likelihood of entrapment (the e ofPNE), Via his evaluation, nerve blocks and other info particularly your history. The pn aware PT caught mine entrapment between the two thight main ligaments, the doctor used that, eval, nerve blocks and history (quality of life added in) to say I wss candidate for sugery and confirmed in surgery. best of luck i forgot to say Lyrica has worked better for some than gabapentin.
Janet
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, 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 surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Re: newbie needs help
Hello there, and welcome from me as well. I am so sorry to hear that you are in such pain, and have had such a difficult time.
From what you say, it does sound as if it would be worthwhile getting an opinion from a PN specialist. You don't mention whereabouts in the world you live, but you will find lists of doctors linked from the homepage of the main website. In some parts of the world, a PN-aware PT may also be able to give you useful information.
If your pain is neuropathic - have you had that diagnosis? - then ordinary pain meds won't help at all. For neuropathic pain there are many more options to try after amitriptyline and gabapentin. These are usually the first ones to be tried because they are very cheap, have been around a long time, and are very well understood. But there are other medications available that can be much more helpful.
Please do let us know how things go.....
From what you say, it does sound as if it would be worthwhile getting an opinion from a PN specialist. You don't mention whereabouts in the world you live, but you will find lists of doctors linked from the homepage of the main website. In some parts of the world, a PN-aware PT may also be able to give you useful information.
If your pain is neuropathic - have you had that diagnosis? - then ordinary pain meds won't help at all. For neuropathic pain there are many more options to try after amitriptyline and gabapentin. These are usually the first ones to be tried because they are very cheap, have been around a long time, and are very well understood. But there are other medications available that can be much more helpful.
Please do let us know how things go.....
Re: newbie needs help
this all sounds like good advice. I will only say if you have this,stay in touch with all these people on here who can help you and ones that can empathize with you. good luck to you.diana