i have pn.
i'm in northern california and. i. have. tried. EVERYTHING suggested by forum folk
every second of everyday is hell, the pain constant, the disability--life destroying
hopingforhope
Another voice from the valley of darkness crying out help
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hopingforhope
- Posts: 2
- Joined: Sat Jun 21, 2014 9:20 pm
Re: Another voice from the valley of darkness crying out hel
Hello Hoping,
That's very sad that nothing has helped so far. EVERYTHING is pretty exhaustive so you must have been in this situation for quite awhile now so I can understand why you would be at your wits end. I would be interested to hear more of your story.
Violet
That's very sad that nothing has helped so far. EVERYTHING is pretty exhaustive so you must have been in this situation for quite awhile now so I can understand why you would be at your wits end. I would be interested to hear more of your story.
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.
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hopingforhope
- Posts: 2
- Joined: Sat Jun 21, 2014 9:20 pm
my story
it all started last year...
I was in college and I was riding my bike home from the store and in the bike lane when a woman talking to her toddler pulled out and hit me, totaling my bike, foot, hand. She had no insurance and two kids, so she dropped me off at the er and I didn't do what my family wanted: turn her in to get medical care. I lost my starring roles in my plays, my girlfriend cheated on me and I was and am disabled. I was devastaed and moved in with my mom and grandma because I couldn't work. I started to masterbate to feel any kind of relief/pleasure/temporary happiness and I did it so much it began to become painful and flacid. I stopped but the pain remains just as serious whenever anything sexual comes to mind. I haven't had ANY sexual activity in almost 7 months but the pain caused from it remains. I hope you know how pathetic I feel, embarrassed..
there is throbbing pain and stinging neuropothy where a fig leaf would be in front and back, and when it get's bad i feel the veins harden around my sphincter, shooting electric pain down my left hip and burning in my lower back. tingling everywhere in my pelvic floor.
i also have tried a myriad of different cures like massage and pelvic floor physical therapy exercises (youtube) with intense heat and ice with pain killers (nsaid & narcotic). lifestyle change to being gracious and praying for others, lost 34 lbs!, vegan, cardio exercise (no bike), accupuncture, i quit smoking, i sleep from 10pm-2am, took mystic indian herbs, and roots, ginkgo, ginseng, krill oil, b6/12, d3, gnc men's prostate health, royal bee pollen and jelly and so much more... i didn't drink coffee and tea because some people said caffeine is bad for the nervous system.. -i only drank boiled\ water w/ honey & cinnamon&lemon for 8 months. and much more. i've been to the ER three times, urologists twice, and am currently being seen at ucdavis for a ct scan. I've called the doctors and pt's listed on your site this year and they all only accept cash or good insurance. dr. goldstein did over the phone and email diagnose me with high tone pelvic floor dysfunction (HTPFD)
my punctuation is not very good in this post because i broke my hands, arms, and wrists last month... so i am of limited means to get a job and buy insurance, all i can do is sit here in all kinds of pain, the worst of which is PN. I would gladly break my arms and wrists again right now if it would dispell this pn affliction... it's truly hell and i can fully empathize with some of the emotions i've read from the forums.
every second of everyday i am in TERRIBLE pain as well as disabled......
i think this disease (or whatever it is) has made me a better person and more aware in my research coming to this point after more than a year of how much invisible suffering everyone has to go through that eventually becomes visible.
i never fought with my mother or grandma ,until this happened... my whole life spiraling into destruction, depression, and agony filled with regret.
thank you violet
I was in college and I was riding my bike home from the store and in the bike lane when a woman talking to her toddler pulled out and hit me, totaling my bike, foot, hand. She had no insurance and two kids, so she dropped me off at the er and I didn't do what my family wanted: turn her in to get medical care. I lost my starring roles in my plays, my girlfriend cheated on me and I was and am disabled. I was devastaed and moved in with my mom and grandma because I couldn't work. I started to masterbate to feel any kind of relief/pleasure/temporary happiness and I did it so much it began to become painful and flacid. I stopped but the pain remains just as serious whenever anything sexual comes to mind. I haven't had ANY sexual activity in almost 7 months but the pain caused from it remains. I hope you know how pathetic I feel, embarrassed..
there is throbbing pain and stinging neuropothy where a fig leaf would be in front and back, and when it get's bad i feel the veins harden around my sphincter, shooting electric pain down my left hip and burning in my lower back. tingling everywhere in my pelvic floor.
i also have tried a myriad of different cures like massage and pelvic floor physical therapy exercises (youtube) with intense heat and ice with pain killers (nsaid & narcotic). lifestyle change to being gracious and praying for others, lost 34 lbs!, vegan, cardio exercise (no bike), accupuncture, i quit smoking, i sleep from 10pm-2am, took mystic indian herbs, and roots, ginkgo, ginseng, krill oil, b6/12, d3, gnc men's prostate health, royal bee pollen and jelly and so much more... i didn't drink coffee and tea because some people said caffeine is bad for the nervous system.. -i only drank boiled\ water w/ honey & cinnamon&lemon for 8 months. and much more. i've been to the ER three times, urologists twice, and am currently being seen at ucdavis for a ct scan. I've called the doctors and pt's listed on your site this year and they all only accept cash or good insurance. dr. goldstein did over the phone and email diagnose me with high tone pelvic floor dysfunction (HTPFD)
my punctuation is not very good in this post because i broke my hands, arms, and wrists last month... so i am of limited means to get a job and buy insurance, all i can do is sit here in all kinds of pain, the worst of which is PN. I would gladly break my arms and wrists again right now if it would dispell this pn affliction... it's truly hell and i can fully empathize with some of the emotions i've read from the forums.
every second of everyday i am in TERRIBLE pain as well as disabled......
i think this disease (or whatever it is) has made me a better person and more aware in my research coming to this point after more than a year of how much invisible suffering everyone has to go through that eventually becomes visible.
i never fought with my mother or grandma ,until this happened... my whole life spiraling into destruction, depression, and agony filled with regret.
thank you violet
Re: Another voice from the valley of darkness crying out hel
Thank you for sharing your story.I am so very sorry to hear you have been through so much and have not been able to get relief from the treatments and changes you made in your life or access to the medical professionals. The only thing I can think that might help and you could find on the internet is meditation to try and get you in a better place aand maybe relieve a bit of the depression. I hope somehow you will find a way to move forward you deserve better and my thoughts are with you. Take Care and wish I had some better ideas. I admire your strength and perserverance, I believe this will help you through.
Janet
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: Another voice from the valley of darkness crying out hel
Wow, that's all pretty dreadful. You sound like a pretty nice guy who is just doing the best you can so please don't beat yourself up too much. Many of us have been in a similar state of depression until we could find the right treatments that help. My first suggestion for you is to find out what your options are as far as applying for disability and subsidized health insurance since you can't work right now. You don't have to necessarily look at this as a permanent situation because with the right treatments you might be able to get your life back. Hang in there. I'm sending you a private message.
Violet
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.
Re: Another voice from the valley of darkness crying out hel
I'm sorry to hear you are in so much pain and despair. I know exactly how you feel - you are not alone. One thing I think helped me was Wellbutrin. I'm not sure why but I think it did. It also helps with depression so it might be a good thing to try. I hope you get some kind of relief. It's 2am and I'm up and in pain. Doc gave me some new exercises and immediately the pain gets worse. Feel like you can't win sometimes but gotta keep trying I guess. Hang in there
L
L