Health Organization for Pudendal Education

i am new to the site my life has been taken over by this pain the suffering ,were life means nothing hopeing & praying it will go away every day wakeing up having an erection suffering with pain for hours even walking shooting pain in leg & in testicals slowing down walking at half speed like someone 90 years old . my wife having to wait for me, spend half the day in bed lying down it seems the only solution . having the run around with doctors all medication nothing works . the pain is me, it takes over no matter how strong you are mentally, going out seeing friends & family when the pain starts i cannot hide they are use to seeing me in pain i am a shamed they say lye down but whats the point i am there to be with them not to be in bed it just destroys me so you then feel guilty i have a 6 year old daughter when the real pain starts you forget every one i just want to die how much longer will this go on .i want to die, i want to plan to die i now can understand people who suffer & cannot see an end. my pain has got worse over the years every day it progress my wife is affected by my state .what a life?

I am new to this site also. posted my first message earlier today and then just now read yours. Please know you are in my prayers! I know how hopeless you feel, I have felt that way many many times over the past nine months. Please try to not give up. I'm doing my best to find some sort of control over this awful condition and get some sort of treatment to help me find my life again. I know it may be different, but I have to believe there is help and hope out there somewhere. We just have to keep on and find it. Thank God for this site. I don't feel so alone and isolated. You are worth the fight, don't give up.

Hang in there. Try to be grateful for the things you do have.

Ray

Brian,

Don't give up! 18 months ago I felt so much pain and despair that I was seriously suicidal. I just kept trying different medications and finally I found something that really helped. What works is different for everyone, so there's no quick answer. Just keep trying--I'm sure you'll find a solution that can make your life feel worth living again. (For me, very low dose amitriptyline works well to make the pain livable, even though narcotics didn't seem to touch the pain.)

Am I all better? No. But I'm in so much less pain now. I swim almost daily and have a fairly busy social life (lying down on friends' sofas!).

Just keep trying things, OK?

Hi Brian,
Welcome to the site. We all feel the pain, age beyond our years and desparation but we try to focus on getting help and having hope. It is brutal to keep up with all the mis-steps. A few ideas are to check out the list of PTs and doctors and try to get with one each in your location. Maybe your general doc could refer you to a pain specialist or give you something
for depression - many anti-depressants actually work for nerve pain such as amitriptylene and cymbalta. Please hang in there for you litttle girl and let us know how you are doing, we are here for you. Take care and fyi most of my friends are coming to my house and if need be bringing lunch or ordering takeout. I hang out on the sofa and we just make do.
Janet

Hello,

I am grateful to have stumbled onto this tremendous site. 14 weeks ago I was hit hard with symptoms we are all familiar with. My Doc and the urologist were useless. I have taken matters into my own hands with PT massage and soon grief counseling. The information on the site and in this forum is already helping.

Fortunately I can work from home so I can still make a living, but that's hardly a life.

Thanks in advance for all of the help and support.

Beezie

We all have our unique stories but we share something intimate: chronic pain in a very private place within our bodies. We are all family here. We must lean on each other. No one else can possibly understand the extent of this pain and suffering.

Welcome to all the new members.
cari

Please go for counselling, it made me feel much better. Think of your responsibility to your child whenever you have suicidal thoughts and minimise your social visits, we dont have to keep up wqith all these. These are the things I try and as cari said we are all one family and we are here to share your grief, dont ever feel alone.

Hello Brian and other new members,

PNE is a very tough journey but with the right treatments it is often possible to get the pain under control and for many of us, we get our lives back as I have. It takes some trial and error to find out what works but you have many options to try. There was a time I did not want to live but I realized that it would not make sense to end my life if I had not tried all of the options available. It is hard to be proactive and search for treatments when you are in so much pain but please keep fighting because it will be worth it when you figure out what is the right treatment for you.

Best regards,

Violet M

I would like to thank all the emails my life is day by day i do not look any further, with my wifes cancer we are both at home ist been diffuclt this last year for both of us trying to keep are lives together & monies its been hard, +the pain .