Alone in the pain

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Alone in the pain

Postby goldmund » Fri Dec 08, 2017 7:06 pm

Hello everybody, I'm 35 years old and I'm here to tell my story.
My story is the story of one man not really able to listen to himself and for this reason in pain for the last 16 months.

Only one month ago I was able to connect the dots and I could understand what is the reason of my urethritis, but my last 500 days were a daily fight against a unknown and misunderstood enemy.
I don't want to tell you my odyssey in the hospital: 13 specialistic medical consultations in prestigious private hospital in my city, almost 1 per month and even more lab tests.
I will not recount the number of different branches of medicine I tried to figure out, because I understood that you're left alone with your pain and senior physician have not time to listen, no time for in-depth analyses, especially if your pain is not severe.

What I'm here to tell you is the feeling of fear that a man tastes when all the doctors he meets simply have no idea of the reason why you daily suffer and the same feeling doubles when your family, your co-workers, your friends start believing you're no more strong, you're no more a man, you're no more able to help because you're daily focus on your pain. You feel you're loosing everything.

I want to raise my hand for this problem, the problem of mistaken diagnosis, the problem of men unable to listen to themself.

I hope you're luckier than me and you will understand clearly what your body tells to you and you will meet doctors who will listen to your story and go beyond the standard answer for your specific pain.

sincerely,

Gold
goldmund
 
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Re: Alone in the pain

Postby Violet M » Sat Dec 09, 2017 6:29 am

Hi Gold,

I remember a time when I felt almost exactly what you just described so eloquently. It was a terrifying time and something you never completely get over, so I just have to say that what you wrote and the way you wrote it really made some past emotions come to the surface.

All I can say is that you are not alone and I hope you find some answers here.

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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Re: Alone in the pain

Postby goldmund » Sun Dec 10, 2017 2:55 pm

Thank you Violet for your words,
After a specialistic assessment and a in-depth EMG I've a diagnosis of "distress of motor component in the left pudendal nerve".
This was diagnosed because of "R1 component of left anal pudendal nerve reflexion is absent, no voluntary (spontaneous) activity and muscle recruiting (pulling) is scarcely carried out bilaterally. "

Do you understand anything in this diagnosis?

Is PT useful in this case?

Thanks
goldmund
 
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Re: Alone in the pain

Postby Violet M » Sun Dec 10, 2017 11:55 pm

Hi Gold,

I think it basically means that the muscles that are innervated by the pudendal nerve are responding slower than normal when the pudendal nerve is stimulated. In your case, it mentions the left anal nerve. Do you have symptoms there? The trick is to figure out what might be causing the muscles to respond more slowly and do the results correspond with where your pain/symptoms are. If not, it could be completely unrelated. You can't base your diagnosis on this test alone. There are many variables that have to be considered including your history, any possible triggers, and clinical exam. Have you already had an MRI?

You can have pudendal neuropathy or pudendal neuralgia without having a nerve entrapment so I think it always makes sense to at least have a PT evaluation to see if there are any additional clues as to what is causing your problems, and give PT a try to see if it helps. You won't know until you try it.

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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Re: Alone in the pain

Postby goldmund » Wed Dec 13, 2017 7:55 pm

Hi violet,
It's one week I'm under lyrical 75mg x 2
Today I feel a terrible pain between my leg and my pubes, which irradiate to my penis.
Did anybody feel the same?
Thanks
Luca
goldmund
 
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Re: Alone in the pain

Postby Violet M » Thu Dec 14, 2017 5:54 am

Being female I would have to say not exactly the same, but I did have knife-like pain on one side where the leg meets up with the perineum. I don't know if that's the same area you are describing. If it's groin pain you might also want to have the genitofemoral nerve looked at.

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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Re: Alone in the pain

Postby goldmund » Thu Dec 14, 2017 10:43 am

Violet M wrote: where the leg meets up with the perineum.

Exactly there.

Yesterday I put some ice in that spot, during this pain, and I felt the pain growing and burning quickly it was like a bolt. Does ice increase pain?
:cry:

One more thing, yesterday during this episode, I felt clearly pain also to the sciatica on the same side. Is there any connection?
Have you got any suggestion to decrease this pain?

Thanks
goldmund
 
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Re: Alone in the pain

Postby April » Fri Dec 15, 2017 4:37 am

Hi Gold,

In my experience, ice definitely relieves the burning pain. But, a regular ice pack has never been cold enough to reduce the pain, so if you're using that, you could try something more direct like the ziploc bag of ice wrapped in a paper towel. The sciatica pain could be related. The pn goes through S2, S3, and S4, I think, so I think bulges in those places can create sciatic pain. You might want to review the anatomy pictures on the main page to check on this.

April
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Re: Alone in the pain

Postby Violet M » Fri Dec 15, 2017 6:05 am

You could try using a heating pad instead of ice. That actually worked better for me than ice before my PNE surgery.

I had sciatic symptoms on one side along with PN. It was because the pain of PN caused the piriformis muscle to go into spasm and that irritated the sciatic nerve.

Are you currently taking any pain medication besides lyrica? You are on a fairly low does of lyrica. You can look at the medication page on our website for more ideas. http://www.pudendalhope.info/node/20 I think it's important to take some medication while you are going through the diagnosis and treatment phase so your pain levels stay under control. You don't have to look at it as a permanent solution to be on medication. I no longer take anything for pain but it sure helped me get through the worst of PNE.

I think finding a good PT might be helpful -- at least for an evaluation to figure out where your pain is stemming from and what accompanying musculoskeletal problems you have that could be contributing to your problem.

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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Re: Alone in the pain

Postby goldmund » Sun Dec 17, 2017 9:36 pm

Violet, you're an angel. Thank you for all the information and suggestion. I'm taking notes and for sure I will ask to my Neuro-Urologist in my upcoming visit.

Violet M wrote: I think it's important to take some medication while you are going through the diagnosis and treatment phase so your pain levels stay under control.


Which kind of medication, for example, are you referring to?


I've one more question for you. Today and Yesterday I walked a lot more than usual and I feel itchiness all over my pudendal area with special irritancy on anus, penis, scrotus, perianal and upper legs.
Have you ever heard something like this or these symptoms are unrelated to walking a lot?

Thanks
goldmund
 
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Joined: Mon Nov 27, 2017 9:23 pm

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