Pudendal Nerve Entrapment/Neuropathy/Damage

Posted by mandiPNE @mandee, Oct 5, 2018

Hello from a new member. Am wondering if anyone suffers from the monster Pudendal Nerve Entrapment/Neuropathy/Damage? I do. And I'm very alone in it. It is a very uncommon condition, and because of its personal nature, one that many people may not be comfortable opening up about. There seems to be a more vocal/visible presence of patients in the US, AUS and France. I hope, I need, I want - for it be made more aware of here in Canada. If there is any one who suffers from it, or who thinks they might, please feel free to open up about it. Please join me in advocating for ourselves in this horrible condition.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

lorid | @lorid | Nov 23, 2019

What is the disease? What are the symptoms ?

dmburns54 | @dmburns54 | Nov 23, 2019

In reply to @lorid "What is the disease? What are the symptoms ?" + (show)

Hi @lorid,
I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the Mayo
Cinic that was extremely effective. I don’t believe the Mayo Clinic treats
this condition currently. Please tell me where you are located and I will
try to help you find a doctor that can help you.
Take care,
Darrell Burns

rstollery | @rstollery | Nov 23, 2019

In reply to @dmburns54 "Hi @lorid, I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the..." + (show)

I'm in Redmond, OR (near Bend, OR) and haven't been able to find a doctor locally to perform surgery

vklittle61 | @vklittle61 | Nov 23, 2019

In reply to @rstollery "I'm in Redmond, OR (near Bend, OR) and haven't been able to find a doctor locally..." + (show)

I’m in Houston Tx I’ll ask my doctor

palmorejs | @palmorejs | Nov 25, 2019

In reply to @rstollery "While I am new to this forum, I have suffered with PNE since 1981. It has..." + (show)

I have had PNE for 18 years. Your description about the two by four applies to me only in another private location. I have tried everything known to man i.e. Narcotics; Pelvic Floor Physical Therapy; a very invasive surgery on both sides (incisions are on each butt cheek) which I travelled from Kentucky to Minnesota (not Mayo but a PNE Clinic I think in Irmo Minnesota operated by Dr. Stanley Antolak who specializes in PNE but may be retired by now); a spinal cord stimulator implant which also failed and was later surgically removed; external lidocaine ointment; you name it and I have probably tried it. Here is how I got relief. At least enough relief to be able to function and a significant reduction in my pain. I have an implanted medication infusion system. It is made by Medtronic if you want to read about it. In order to get the surgery I had to wean off of all narcotic pain meds and be off for six weeks. The pump is placed in the left side of the abdomen and a tube is run to your spinal cord. It delivers a tiny amount of morphine and marcaine (all completely implanted and controlled by your doctor). The difference between this and narcotic pills is the amount is so tiny that you don’t get the systemic effects of narcotics. It continuously pumps a small amount of the drugs into your spinal cord where it blocks the pain signals going to your brain. They last about six years (battery life) and depending on your dose need to be refilled about every 75-90 days (refills are a simple procedure with a needle). I also take Gabapentin to supplement that. If it weren’t for that my pain was so bad I had considered suicide many times. I have also found that stress is a big factor. I am on my second pump (had one about ten years) and without it I don’t think I could have survived the pain and it’s delicate location. I completely understand your living in private pain. I still have pain so I don’t want to imply this is a complete fix because it isn’t but it made a big enough difference to allow me to live a mostly normal life. There are days when I have very little pain (almost none) and there are days I have pain that is worse. I discovered the relationship to stress just due to time and experience. I ended up getting a divorce after 13 years recently because the stress of staying in a volatile marriage was having a huge effect on my pain levels (another example of the stress factor). If you decide to investigate go to a large university pain management department or a reputable pain management facility. My insurance covered the surgery and the ongoing refills. The pump saved my life. If you have any questions just ask.

rstollery | @rstollery | Nov 25, 2019

In reply to @palmorejs "I have had PNE for 18 years. Your description about the two by four applies to..." + (show)

@palmorejs

Jump to this post

Thanks for such an informative post. I will talk to my doctor about this, although it may be better to try a chronic pain specialist for their advice.

betty1954 | @betty1954 | Nov 25, 2019

I have lived with this pain continual for overe 10 years also. I also tried the spinal stimulator and had problems the whole two years I had it in. A neuro surgeon then did back surgery and put in a 10 inch bar due to disc deteriation in my back. I started seeing a pain specialist about 18 months ago. We have tried injections, ablations and had little success. I have now started on a pain patch that so far has relived at least 95% of my pain. I feel I can now live a fairly normal life if it continues to work as it is now. I am so thankful for my pain specialist not giving up on me.