Two years, so many tests, scans, exploratory surgery and medication trials... passed from pillar to post with a diagnosis of pudendal neuropathy that health professionals, although sympathetic, have to Google the first time they meet me. I'm worn out by the inability to sit and the pain being so much worse when I lie down or try to do any kind of physical activity. My post grad studies and plans for the future cower hopelessly below the insidious and relentless pendulum of pudendal nerve pain, that threatens to sever me from ever being able to work or study again.
Am heading down from Yorkshire to London tomorrow to the Sayer Clinic in hope that someone can help me. Am fearful about the cost but, I haven't found any NHS health professionals that could do anything about Pudendal problems. My life is so marred by chronic severe pain from the 'barking of the poodles' as i call it, that desperate times call for desperate measures. Is there life after pudendal nerve problems?
So many shoulder shrugging health professionals...
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RainbowPoodles
- Posts: 1
- Joined: Sun Jan 12, 2020 11:52 am
Re: So many shoulder shrugging health professionals...
Poodle
Yes there is life after PN . Hang in there. With the right meds and down shifting to 1st gear to reduce flairs, and reduce stress, there may be a different life for you . But u will be ok. You are smart n you found this forum where you can research others experiences via the "search bar " and past posts. You will reassess goals, paths, and everything for that matter. Things may have to go on the back burner for a while. Many have gone back to work etc. I did for 4 years with PN medicated .. (until the meds turned on me n then i got a pudendal nerve block which caused a domino effect of problems ending w me poly medicated n on disability ) but that's my story and even so i am still in the fight. So yes there is life after PN and everyone's journey is different. Medical break thoughts happen all the time . Educate yourself constantly so u can ask the right questions for your personal PN issues. Others have gotten better enough to work n not be in pain unless they over extend , there are meds, surgeries and PT etc....Get imaging
( 3tmri) of the pelvic incase something else is going on . Just be careful of what u do to try to make things better, so they don't make u worse. Don't make decisions poly medicated. RESEARCH EVERYWHERE THAT'S ACCREDITED N SEARCH THIS FORUM for answers , get donut pillows in your car n home. Find OTC tools to help u deal like compounded lidocaine creams, hot gel pads, frozen ice bottles n pads. I have my bed in the living room so i can lay and I had a friend build a tall stand up desk for me to use the computer. So i stand, walk the back yd , or lay to write, answer emails via my phone or watch tv.
Rainbow... , i was strong happy , free , independent and athletic when i was struck w PN so i get it . I have had a decade of this n i feel your pain. How long have u had PN, and
what is at the Sayer Clinic? Stay home n covid 19 free n let us know about Sayer. Best of luck there. SADIE
Ps i just noticed a patient GillT just posted a success story about Sayer on the forum. I have not read it yet but u may want to just in case it has any relevancy to your situation.
Yes there is life after PN . Hang in there. With the right meds and down shifting to 1st gear to reduce flairs, and reduce stress, there may be a different life for you . But u will be ok. You are smart n you found this forum where you can research others experiences via the "search bar " and past posts. You will reassess goals, paths, and everything for that matter. Things may have to go on the back burner for a while. Many have gone back to work etc. I did for 4 years with PN medicated .. (until the meds turned on me n then i got a pudendal nerve block which caused a domino effect of problems ending w me poly medicated n on disability ) but that's my story and even so i am still in the fight. So yes there is life after PN and everyone's journey is different. Medical break thoughts happen all the time . Educate yourself constantly so u can ask the right questions for your personal PN issues. Others have gotten better enough to work n not be in pain unless they over extend , there are meds, surgeries and PT etc....Get imaging
( 3tmri) of the pelvic incase something else is going on . Just be careful of what u do to try to make things better, so they don't make u worse. Don't make decisions poly medicated. RESEARCH EVERYWHERE THAT'S ACCREDITED N SEARCH THIS FORUM for answers , get donut pillows in your car n home. Find OTC tools to help u deal like compounded lidocaine creams, hot gel pads, frozen ice bottles n pads. I have my bed in the living room so i can lay and I had a friend build a tall stand up desk for me to use the computer. So i stand, walk the back yd , or lay to write, answer emails via my phone or watch tv.
Rainbow... , i was strong happy , free , independent and athletic when i was struck w PN so i get it . I have had a decade of this n i feel your pain. How long have u had PN, and
what is at the Sayer Clinic? Stay home n covid 19 free n let us know about Sayer. Best of luck there. SADIE
Ps i just noticed a patient GillT just posted a success story about Sayer on the forum. I have not read it yet but u may want to just in case it has any relevancy to your situation.