First time blogging: I never thought I... - Pelvic Pain Suppo...

Pelvic Pain Support Network

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First time blogging

rundai profile image
10 Replies

I never thought I would be blogging about pelvic pain. I have been dealing with this for years. I am not sure what I am going to do. It is hard to accept the dx of pelvic pain. I have good Drs., but it seems much more. I don't know if there is any reply anyone can help, but I am in a hopeless state now. Got layed off. I don't want to fall on my family. If there is even feed back for encouragement. Thank you.

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rundai profile image
rundai
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10 Replies
jacquieb profile image
jacquiebVolunteer

What type of pelvic pain do you have?

rundai profile image
rundai in reply to jacquieb

All they tell me is there is pelvic floor nerve and muscle damage. I just got out of the hospital. That is why I am so late in replying.

rundai profile image
rundai

No specific DX just muscle and nerve damage on the pelvic floor. Thank you for asking.

cookie1234 profile image
cookie1234

Hi. I have had nerve pain for years. I had a spinal cord stimulator put in.

. I have had it over 2 yrs. It has taken me a year to really learn how to work it, I also take 4 10-325 percocet a day, soon to move up to 5 a day.

I am going to Phoenix to have a consultant in May, I believe I have PNE or decompress nerve entrapment. I need surgery. This is the last thing to do for I have tried everything. Without pain medication, I would just die. for the pain is to much to handle.

cookie1234

jacquieb profile image
jacquiebVolunteer in reply to cookie1234

I would be interested to hear your views of the SCS, and how does that differ from neuromodulation treatment? Why does it take such a long time to get relief?

rundai profile image
rundai in reply to cookie1234

I understand how you feel and hope you find the answer.

amma2 profile image
amma2

I highly recommend that you see a Physical Therapist who specializes in Pelvic Floor issues and also to see a Pudendal Nerve Specialist. I was a mess and the Physical therapist got me started feeling better then referred me on to the Pudendal Nerve Specialist who gave me steroid injections into the ligaments that surround the Alcock Canal through which the Pudenal Nerve passes. He also put me on small doses of Baclofen; Valium and Gabapentin. I take some Sun Cholerra to go poop but I am in a tolerable place now and can live a pretty normal life. I wish you all the best - getting diagnosed was the hardest part and I had a nervous breakdown in the process.

jacquieb profile image
jacquiebVolunteer

Hi who was your pudendal nerve specialist? was he also a pain consultant?

rundai profile image
rundai in reply to jacquieb

I see a urologist , who specializes in pelvic disorders.

Manwpelvicpain profile image
Manwpelvicpain

Good luck to everyone because I haven't had much luck lately with my pelvic tension myalgia. It is horrible and ruins your life. Just when you think you have it beat, it rears it's ugly head again. It is truly a condition created by the devil. I can't do anything anymore without being in pain from it. I stretch, exercise too hard, lift weights or anything over 20 pounds or so, I sit down or stand too long; I'm in pain and pay the price. This condition keeps you from living. All you do is exist. I really wish I had good news for you, but unfortunately, there is no good news to report in my world or the medical world with fixing our problems. It is truly a hell on earth we are forced to live in because of our dysfunctional bodies.

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