Any chance of being cured? - Pelvic Pain Suppo...

Pelvic Pain Support Network

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Any chance of being cured?

PNist profile image
17 Replies

Hello, I've been trying to deal with this pain for a long time now. I was wondering if there's any chance of feeling %100 beter? My pain won't go away. It's 7/24, not just when I'm sitting etc. I'm having steroid injections in May and I don't want to be disappointed. Nothing helps..

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PNist profile image
PNist
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17 Replies
Jei-Carter profile image
Jei-Carter

well it is possible...if u can e treated right is the question....what have u had done??? where is the pain.... how long has it been goin on.... where is it concentrated,,,,, what causes the most pain...   it is a jigsaw puzzle... we all go through....

Cardinal profile image
Cardinal in reply toJei-Carter

She has PN. I remember from her last post.

Jei-Carter profile image
Jei-Carter in reply toJei-Carter

this condition is a fight on so many levels.... is it the  on left side or the right side or both....

PNist profile image
PNist in reply toJei-Carter

Hello, I have PN. It's on my left side. I've been using Lyrica and an antidepressant since August. I had vestibulectomy which didn't reduce my pain so after having an MRN, my doctors decided that I have PN. It's been going on since March 2015. 

Cardinal profile image
Cardinal

That's up to you. If you are willing to do what it takes to get better (which will likely mean having physiotherapy for at least a few months) you can get better. You may as well try the steroid injections, but I personally have not heard any success stories at all from them. Let us know how you feel though, once you get them. You never know.

Jei-Carter profile image
Jei-Carter

it is a complicated disease.... post everything specific that u can...

etwersky profile image
etwersky

I am seventy and was diagnosed eight years ago with pudendal nerve entrapment. Took me four years to find a drug that would allow me to function. I was in a mental hospital suicidal from a pain of "10". They gave me a dose of 40 OxyContin and Cymbalta. Pain is not away but is now bearable. Perhaps it is time to do some research on the subject again. I actually not hopeful that progress has been made but perhaps I am wrong.

 

Cardinal profile image
Cardinal in reply toetwersky

Have you tried methadone for your nerve pain? It works was way better than Those usual narcotics for nerve pain. For me, at least, and I've heard for other people too. Just an idea. I tried all of them with very little or no success until methadone. Thank the Lord.

Jei-Carter profile image
Jei-Carter in reply toetwersky

it is a struggle etwersky... i can empathize... waiting and wishing... it is a slow process for us waiting for hope...

Hornsealady profile image
Hornsealady

I have had one steroid injection so far and had a really good result. Once it settled I had about 8 weeks of relief not totally pain free but periods of no pain at all. It's not a cure but may give you much needed reprieve , hope you have a good result.

Think it depends on the angle of your question. If you are really saying "I am in such desperate pain, I don't know if I can tolerate this and live," the answer is probably "No, it won't go away 100%." None of us can be in our worst pain and think very clearly. Please try to take it one minute or hour at a time. I use 12-Step materials to help me avoid the terrifying fear.

 If you are seeking biological information, the answer for almost all people is "You can find some relief, will gradually develop coping mechanisms, and improve the quality of your life." 

The answer is also different depending on what causes your pain. I had great relief from low back nerve pain years ago when a disc was repaired and bone spurs pressing on the nerve removed. My pelvic, abdomen, vascular injury, and peripheral neuropathies are much trickier challenges, but new treatments are developed all the time. 

I got an unusual digestive complication a year ago from a heart procedure. GI health providers offered no treatment except an unhealthy restrictive diet and terrible drug options. Just recently my physical therapist and "medical body worker" taught me how to do stomach massages several times daily. And stay upright and walk after meals, especially dinner. And I bought a new model of the old handheld baby food grinder I used with my kids decades ago. So while still a major challenge, the pain and disability are tolerable now.

Rmoretz profile image
Rmoretz

What is your diagnosis? Levitor Syndrome  ? Not a single doctor I've  seen will  answer that question for me. Everyone says I don't  know. Very frustrating. My pain is all the time no matter what I'm  doing. Botox didn't  help. Good luck. Let me know if that works.

PNist profile image
PNist

I have PN and nobody knows the cause including me. It just apperared when I was incredibly stressful and wouldn't go away. It is more painful everyday and I'm losing my mind over this. 

AMJ65 profile image
AMJ65

Check out the link I've just added. PN 

AMJ65 profile image
AMJ65

Here's the link.

ivanhoe.com/channels/p_chan...

Jei-Carter profile image
Jei-Carter

I know for me the medicine that actually physically helps stop my muscle from triggering so much is anti anxiety medicine... clonazepam or something

If you google TMS wiki website surprisingly.some have been cured through ming body therapy. I mean I was skeptical at first but it is very interesting to read. A user called ezer had pn and he's much better now...it can be possible I think

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