Health Organization for Pudendal Education

I need some help, I have been suffering for so long. I need somebody to talk to about all this. I am in so much pain I don't know what to do. Would anybody be willing to have a phone conversation about this, I would be so grateful.

Shawnmellis posted that he works from home and would be happy to talk with anyone who sends him a pm. He lives in NC. If you send me a pm, I would be happy to talk with you as well if you send me your number. I live in Calif. and by the time I get home from work and have dinner, it is 8 pm PST so the call would be pretty late if you live on the east coast. Check the section on pain management. Lyrica and Oxycodone helps me but there are other choices as well. You have found this site so you are not alone with this problem any more.

Best Wishes,

Don

If you are on facebook there are a few sites but the most active one seems to be Pudendal Neuralgia Support then you can 'chat' with people who are on line of course. In the mean time take a look at the home pages here they do help enormously.
Hope you find the help you need soon.
Helen

I don't know whereabouts in the world you are, helpme? - could you let us know?

As don says, you are not alone with this any more. We know what PN pain feels like, we've been where you are now.....

I am in the states, live in Chicago IL. Still awake at 6 am, what kind of life is this? I don't have that many people to talk to anymore as half the people I know think I'm nuts. I am nuts; nuts with pain basically. I don't know WHAT i'm supposed to do anymore. My physiatrist that i just went to either did a PNMLT or an EMG and she said the motor function was normal. She's saying The nerve/s are irritated because the tightness of my muscles. What does this all mean, is she saying I don't have a pudendal nerve problem or I do with it being irritated and she wants to send me to PT. I have an MRI ordered, is that gonna help? I know the pudendal nerve has sensory and motor functions, so just because the motor function says normal doesn't mean everything is normal. She said it is irritated so is she saying I have something wrong with it? Because I obviously have nerve issues with the kind of pain and symptoms I have. I can't even sit and it's nuts! The toilet is the only place I can sit.

Are you on any kind of medication? PT can help but I would like to see you get some of the worst symptoms under a bit more control with medication if possible. Many people get relief with ice btw. Have you tried that even frozen peas, wrapped in a thin towel works.

I just started on last Monday neurontin 300 mgs the first 3 days and then 600mgs the next three days, and now I just started last night 900 mgs for the next three days. Do I need more time with this, higher dosage? I also have recently started amitriptyline, only half of a 25 mg pill a night for that. I have bladder issues, I have colon problems going to the bathroom, I have medications for some of these things, I was diagnosed by one doctor with interstitial cystitis but then another doctor said no. I seem to have bladder issues with frequency sometimes, but could this be pudendal nerve related also? I don't know anymore I've been running in circles and there have been so many things seeming to be going on with me, I just need this pain to be under control.

Bladder and bowel issues can both be PN related. I took 2400 mgs neurontin per day eventually, but the dose does have to be built up.
wouldn't like to advise you on this score too much but cymbalta has helped me the most with tramadol for non nerve pain (ie. buttock, grion and hip)
Of course you need to be careful how the meds all mix so check any combo out with your Dr or pharmacist.

Nope, I am not a pharmacist! I just did a lot of research on my own behalf, that's all.

Seriously though, gabapentin/Neurontin - most people with PN would not be getting any pain relief yet, at 900mg. Usually it has to go to 1800mg, or higher - 2400mg is not uncommon and some people have had to go as high as 3600mg. So because you aren't getting any pain relief yet, doesn't mean that you won't. If you follow me!

Amitriptyline - you are on 12.5mg at the moment, some people do notice a bit of help at 10mg, others need to take it up to 25mg or higher - the dose does not usually go above 50mg for neuropathic pain. So once again, because you aren't getting any help from this yet, doesn't mean that you won't!

Please do stay in touch with your doctor on this, she needs feedback as to what is working for you, and what is not.

Ok, first of all you need to mentally prepare yourself to be your own ADVOCATE. Gain as much knowledge as possible through this website. Find an MD who will be your "partner in crime" for this condition. For me, it was my OB/GYN. You may need prescriptions for meds and MRI's and referrals so find someone willing to do these things for you.

http://www.ric.org/aboutus/people/docto ... octorId=27

Looks like this is an MD in Chicago who deals with pelvic pain. Start there.

Pain meds: Make getting your pain under control your top priority. Have your neurologist (or any doctor with whom you are currently under their care) prescribe percocet for major pain flares. Using the neurontin and amitriptyline are great as well. Valium and some compounded suppositories help some people.

You need to take control of your condition and be the leader of your team. Educate yourself and then start taking steps to find a diagnosis and treatment.

Welcome to the group
cari