Hello. Looking for some help i greatly appreciatethe time to read snd respond and im sorry for everyone else in constant pain i am in quite a bit of pain 24/7. I am a 43 year old male. Never married, single, no kids, live alone, work from home on the computer. 5"9 185 pounds, not overweight. 2 years ago was having lower back problems, got bad after I got covid, because I was in bed alot more and sitting and laying down more.
Now that being said, because I am not working in an office, not having a family and being single I literally sit or lay down all day and night basically. Working at a computer, or driving in my vehicle or laying down watching movies. Should have been going the gym and moving around more, but I don't go out much. So I got an mri 2 years ago, they say my L5 disc was compressed from lack of mobility, also i had alot of pain in my pelvis and groin area, doctor even thought i might have had colon or prostate issues, so that checked out fine. We now think Likely it was an undiagnosed PN. I did physical therapy and started moving around more and for 1.5 years it basically went away. I have been back to my old habits for 5 months, pain and symptoms came back with a vengeance. Had another mri last week Now my S1 nerve has a protusion. My doctor sent me to a colon surgeon and got a colonoscopy because I have pain in that region, constipation and burning, and all the PN symptoms fit like a glove. So due to lack of mobility I have L5-s1 issues, and very likely PN. Got a steroid injection for the l5 it did nothing. The s1 nerve protrusion just was diagnosed 4 days ago so my physical therapist will me made aware of that tomorrow at my next physical therapy appointment.
The PN is basically a deduced conclusion by my primary care physician, a colon surgeon, the gastrointestinal doctor and my friends dad who is a retired urologist. So I got the lower back issues and the PN. I have read alot of this forum. What do you recommend for a start? What my plan is anyway and in the interim. I am deciding to get a job out of the house to move around more. Changing diet and doing PT and joined the ymca to swim and work out. But the pain is so severe when I sit or lay on my back. I have never needed pain meds for anything in my life but i do now. The Oxycodone helps the back pain for now, but does nothing for the PN. The pain is so bad with the PN. Standing helps tremendously. But sitting and laying down hurts so bad. I know there are lots of nerve injections, i cant seem to find any people that say it worked for them or worked for long. Alot of nerve imaging tests that can almost definitely diagnose this? Hopefully my doctors will come up with a plan, but this is all happening in real time and it seems alot of you have personal experiences. What is your advice on first treatments/ proper diagnosis, and pain medications? I cant deal with this and work and pay my bills. Very nervous that this isn't going to be resolved. Also what kind of cushions for driver and for laying in bed on your back would you recommend to keep that coccyx and that area without pressure which in turn hurts like he'll? Any help will be greatly appreciated. Thanks for reading
Injections, procedures and cushions that work
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Yourfriend2024
- Posts: 2
- Joined: Mon Jun 17, 2024 7:33 am
Re: Injections, procedures and cushions that work
Hello,
Two things to focus on right away would be:
1. A proper diagnosis so you know what you are dealing with.
2. Better pain relief because you can't stand up all of the time.
Some things to pursue for getting a proper diagnosis are to see a pudendal nerve physician specialist, and an experienced, knowledgeable PT who can evaluate your pelvic floor to determine if there is pain when they press on the pudendal nerve and whether there are any pelvic floor muscles in spasm. They can also determine if you have musculoskeletal issues contributing to the problem. You could also get a pelvic MRI with settings that enhance the imaging of the nerves to see if there is any obvious compression or impingement on the pudendal nerve. I don't know many people who had long-term improvement from a nerve block, but it can be an important diagnostic too. For coccyx/rectal pain you could consider a ganglion impar block if your doctor recommends it. If your symptoms and diagnostics are pointing toward a nerve entrapment you could see a PNE surgeon.
(see criteria at the following link: https://www.pudendalhope.info/wp-conten ... iteria.pdf)
I don't see these criteria as being 100% accurate for determining it there is an entrapment, because I was entrapped but didn't match the criteria exactly. I had pain in all positions, including lying down and when trying to sleep. Anyway, once you get a pretty certain diagnosis, you can decide what treatment options to pursue.
For pain relief, I don't know what all you have tried but some of the medications that may help are listed at the following link:
https://www.pudendalhope.info/medication-management/
Some people have had good results with buprenorphine - a narcotic that is not prone to causing an addiction or causing a tolerance to develop so it doesn't work anymore. It can be difficult finding a doctor who prescribes it though.
You could also try a combination of duloxetine and pregabalin (lyrica).
For sleep, clonazepam or ambien CR can be effective. Clonazepam worked best for me.
Other options are tizanadine C or ketoralac 30 mg weekly injections.
Sometimes topical ointments help -- such as nitroglycerin for rectal pain, or gabapentin/lidocaine cream.
You can also try suppositories -- baclofen, diazepam, ketamine, or gabapentin.
A heating pad, gel ice packs, or alternating hot/cold sitz baths can give some temporary pain relief.
Memory foam cushions are nice for cushioning in bed. For sitting, a roho cushion worked best for me but nothing really worked for sitting. Some people like gel cushions.
I know it's scary thinking that this will never go away. I was in that situation during the worst of my PNE journey. I have a great life now, and I know lots of other people who have gotten better. So please don't despair because you have some options.
Wishing you all the best.
Violet
Two things to focus on right away would be:
1. A proper diagnosis so you know what you are dealing with.
2. Better pain relief because you can't stand up all of the time.
Some things to pursue for getting a proper diagnosis are to see a pudendal nerve physician specialist, and an experienced, knowledgeable PT who can evaluate your pelvic floor to determine if there is pain when they press on the pudendal nerve and whether there are any pelvic floor muscles in spasm. They can also determine if you have musculoskeletal issues contributing to the problem. You could also get a pelvic MRI with settings that enhance the imaging of the nerves to see if there is any obvious compression or impingement on the pudendal nerve. I don't know many people who had long-term improvement from a nerve block, but it can be an important diagnostic too. For coccyx/rectal pain you could consider a ganglion impar block if your doctor recommends it. If your symptoms and diagnostics are pointing toward a nerve entrapment you could see a PNE surgeon.
(see criteria at the following link: https://www.pudendalhope.info/wp-conten ... iteria.pdf)
I don't see these criteria as being 100% accurate for determining it there is an entrapment, because I was entrapped but didn't match the criteria exactly. I had pain in all positions, including lying down and when trying to sleep. Anyway, once you get a pretty certain diagnosis, you can decide what treatment options to pursue.
For pain relief, I don't know what all you have tried but some of the medications that may help are listed at the following link:
https://www.pudendalhope.info/medication-management/
Some people have had good results with buprenorphine - a narcotic that is not prone to causing an addiction or causing a tolerance to develop so it doesn't work anymore. It can be difficult finding a doctor who prescribes it though.
You could also try a combination of duloxetine and pregabalin (lyrica).
For sleep, clonazepam or ambien CR can be effective. Clonazepam worked best for me.
Other options are tizanadine C or ketoralac 30 mg weekly injections.
Sometimes topical ointments help -- such as nitroglycerin for rectal pain, or gabapentin/lidocaine cream.
You can also try suppositories -- baclofen, diazepam, ketamine, or gabapentin.
A heating pad, gel ice packs, or alternating hot/cold sitz baths can give some temporary pain relief.
Memory foam cushions are nice for cushioning in bed. For sitting, a roho cushion worked best for me but nothing really worked for sitting. Some people like gel cushions.
I know it's scary thinking that this will never go away. I was in that situation during the worst of my PNE journey. I have a great life now, and I know lots of other people who have gotten better. So please don't despair because you have some options.
Wishing you all the best.
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.