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Pelvic Pain Support Network
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Pudendal Neuralgia?

Hello, I'm AJ.. I'm 17 and currently living in pain.. About 9 months ago I felt burning when I urinated. That turned into a feeling of a lump or ball in my rectum. After that i got ghost pain around my genitals and went into my legs. It was a burning/stinging/prickly sensation... Then i was visited by a coldness in my genitals. I get pain between my anus and scrotum too.. Ive had all those symptoms for the past 9 months. And they've only gotten worse.

I went to three doctors who didnt know what it was, and im currently awaiting my urologist appointment in Febuary. Oh and i also have pain in my lower back. I have a feeling this is pudendal neuralgia. I am homeschooled and sit ALL DAY in a chair at my table.. Any suggestions? I could be wrong but this sounds like exactly what ive been feeling. as you could imagine ive been quite stressed and scared..

its made me super anxious which i never was before. I am also allergic to gluten, and i heard that causes neuropathic damage. The only thing thats making this a little better is prayer. Idk if whoever is reading this is religious, but i am.

Thanks in advance

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Hi AJ. I am sorry to hear about the pain you have been enduring the past months and hope you feel well soon. Did the doctors check to see if you have a UTI? Good luck with your doctors appointment in February! I will definitelu keep you in my prayers

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Yeah they checked me for that. 2 urine cultures

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I searched online the pain your experiencing and this is what it says.

In all types of prostatitis that cause symptoms, many of the symptoms are caused by spasm of the muscles in the bladder and pelvis, especially in the area between the scrotum and the anus (the perineum). Pain develops in the perineum, the lower back, and often the penis and testes.

You say you have to sit all day in a chair? I'm not a 100% sure but from my experience and everyone that has PN can't sit without pain. Here's a link for symptoms of PN.

beyondbasicsphysicaltherapy...

I pray you find out and soon become better. Its difficult to live in pain and you are so young.

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I do sit in a chair but I have to get up in a matter of minutes becuause of the pain. I also have a pillow to sit on.

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Ok then that's a sign of PN.

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Yeah i dont think im as bad as everyone else, but it for sure hurts when i sit

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Pain is pain. You need to get it checked out before it gets worse. Try putting ice down there. I find it helps. Try to avoid sitting if possible. If this urologist doesn't help you try finding a therapist that can help you with stretching. If that doesn't help look up physician's that specializes in PN. I hate that your so young and being in this situation. What I had to do is research and try multiple things.

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Thanks for your concern.. Im hoping my urologist can help me out.

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I sat on a padded toilet seat that had two inches of firm foam cushion glued to the under edging. It was heavy and I took it everywhere I socialized. My right alread had tendonitis from carrying a small cooler with ice packs everywhere I went as I sat on ice. The burning pain from two pinched nerves was awful!!😝😝 three surgeries later, I sit on a Spoonk reflexology seat....it distorts the nerve pain signals. I also use capsicum Pain patches.

I was forced to quit working. I didn’t sleep for three years.....I knew I needed fluoroscopy guided nerve blocks or surgery. I educated myself on my condition. No doctor in British Columbia, Canada would help me! I was emotionally abused, slandered, dismissed, mistreated and left to die in agony. Every doctor I saw misrepresented the truth. No one believed me...including my family!

The pain was life threatening. I almost died from sleep deprivation! All my doctors did was poison me with useless prescription drugs! They did nothing for my pinched nerve pain.

I hired a registered nurse consultant. She saved my life. She was able to get the only doctor who could send me to the US for surgery to approve of it. Without her I’d be dead and my son a victim. Doctors DO harm!

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Thank you man. you are way worse than i am atm..

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Here's another link that explains PN in men and Women

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Sorry forgot to paste it

jasonattaman.com/pudendal-n...

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Hi

Dreadful stuff , I had all those symptoms and found physio therapy did the trick for me , still get pain now and then put not as bad , good luck

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What did it end up being for you?

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Nerve entrapment/ damage due to excessive sitting (my job) .

Stretching and physio (massage)

Relieved a lot of symptoms

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That’s what I think mine is. You had pudendal nerve entrapment? What was the pain scale for you? Sometimes for me it’s unbearable and sometimes it’s mild.

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Penis tip burning was the worst for me , the same spot all the time whenever I sat down , to be honest it wasn’t unbearable because I was onto it pretty quickly to sort it all out .

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Dude same! My penis tip burns a hell of a lot man.. that and my rectum.. was your penis tip red?

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It was a different colour to what it normally was yes .

Have you read this thread ?

healthunlocked.com/pelvicpa...

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Yeah ive read that one. Good, i like when my symptoms are the same as others. makes it feel less scary

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Hi AJ research this book whilst you are waiting for your appointment. amazon.co.uk/Heal-Pelvic-Pa...

I found the stretches relieved my pelvic pain. I hope you find a solution soon.

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Hi AJ, I too love the Lord and will be praying and believing for your healing to manifest. God has blessed us through divine as well as modern medicine and natural medicine. I have been blessed to feel sooo much better and get stronger daily is my affirmation, that He is restoring my youth as an eagle and has healeth all of my diseases. You need to not sit all day to relieve pressure that makes this worse. There are stretches that help the symptoms. I take a combination of Gabapentin and Cymbalta and then if it is not a good day which those are what I experience mostly now "Praise God" I would add a Tramadol 50mg with that and it would help tremendously when taken all together relieving that rectal pressure and burning. I pray that this helps...goggle pudendal nerve stretching and exercises these will help u as well.

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Thanks so much. I Take gabapentin too... my perscription is 2 pills a day but i only take one because it makes me feel sick.. So you have pudendal nerve damage too? What were your symptoms?

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Hi

A good physio or osteo is what u need or good PN pain or exercises they will show u some stretches and things to help u.

It usually a trapped nerve in that area so once a physio seen u it should become easier but try not to sit on it to long as this is putting pressure on it which will not help ur pain at all.

Also as it a nerve pain a gokd nerve blocker should work ie gabapentin or pregbalin. Start at a low does and work up till u get relief

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Thanks! I take gabapentin once a day

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I am female I had some but not all of your problems and then of course some issues that you don't have. When it was at its worse I could not stand sitting and I felt that my peri area had a candle burning internally a burn much different then caused by fire. I was prescribed gabapentin twice daily but I only take once. The medication did make me feel funny at first but after time I grew a tolerance and don't have any issues except if I miss the Cymbalta...something you cannot stop abruptly makes you literally feel sick.

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Yeah i feel the burning too. If i had gone into detail this post would be an hour long read, haha. I feel the burning in my rectum and genital areas inside and out. Sometimes itching.. And it gets cold a lot down there. The coldness also spreads to my feet. The lump in my rectum makes it hard for me to use the bathroom and sit.. I can sit on my pillow but its still bad pain. I wouldn't say i have the worst pain, cause some people out there are downright suicidal. I do have my breakdowns but im far from suicidal. I have bad anxiety now too

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