Pudendal Nerve Entrapment/Neuropathy/Damage
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.
@donfeld You said about Tumeric. I couldn't take the capsules or the powder but I am able to get rumeric in Golden milk. You add water a little in a cup put your turmeric I use 1/8 the teaspoon and some ginger in the water . muke it for about 35 minutes then add milk to it warm up to taste and drink you can add honey if you want to That way my stomach doesn't object
Hi my previous lioness, so happy you love to use natural resources too ; I'd use ginger oil with lavender if it's nerves twitching also for headaches I use lavender from migraine i used to have such bad migraine I'd be violently sick and need to stay in a very dark room, ( as dark as darkroom for photographers ) now when I get one starting which isn't very often these days , i use lavender just few drops on the back of my neck, and forehead if need be. Nerve hot with inflammation I'd use either peppermint with chamomile few drops of both with lemon two drops of lemon oil and carrying oil fractured coconut or Avocado oil as they better absorbed into the skin . Hope this helps also frankincense oil and eucalyptus are especially good for pain lavender is great for nerve pain too and as you would already know great for burns , ( never leaving scar. ) tea tree goes well for hair especially with eucalyptus and coconut . There's so many especially oils still learning after 35 years.. which keeps me busy. Enjoy your precious evening/ weekend tc hope this can help you guy's.
Kind regards swift hug from blustery old England
Thanks for info.
@swift Thanks for the information on nerve pain and it is burny kind You have a great day and weekend coming up It is sunny here in Calif. about 70 sorry
I know this post is from a while ago, but I was wondering if you had the surgery? I am from Canada and no doctors I have seen consider my Tarlov cysts to be causing my problems including my pudendal neuralgia. Do you mind if I ask where you were able to get treatment?
Hi Nicky, did you get some relief from Dr. Hibner? I think I may have PN as well, not sure.
Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?
@stephpez
I went to see Dr. Feigenbaum in Dallas, TX. I am currently fighting with my insurance co. to approve the surgery. There is another in CA and his name is Dr. Shrot. You can find all of their info. and a ton more very helpful info. at http://www.tarlovcystfoundation.com Also, there is a Facebook group called Tarlov Cyst Society where I see quite a few people talk about their experiences with the 2 doctors I just mentioned. Since arachnoiditis goes hand in hand with Tarlov Cysts you will find extremely helpful info at http://www.arachnoiditishope.com and there is a Facebook group called Arachnoiditis Society For Awareness And Prevention. Another thing you can do is go to http://www.frankfeigenbaum.com There is a section on there that tells you step by step what to expect on surgery day and recovery. If there is any other info. I can help you out with please let me know. Take care!
@bkruppa
I'm sorry to hear about your wife's pain. It is very common for Tarlov cysts symptoms to come & go and for the pain level to go up and down. Dr. Feigenbaum in Dallas, TX told me this. I also have the pudendal nerve pain like your wife. I've been having a bunch of nerve blocks done in the hips, sciatic, pudendal, the muscles that go across your back from hip to hip, etc. The other day I came across http://www.arachnoiditishope.com and am now questioning whether I should even have any more nerve blocks. Since Tarlov cysts and arachnoiditis go hand in hand (I didn't know that) it seems as though the nerve blocks will help momentarily but will most likely make the arachnoiditis worse. Since it's something you will have for the rest of your life and is a progressive disease I think I'm going to choose not to have any more nerve blocks. The site for arachnoiditis was extremely informative and helpful. I urge anyone with Tarlov cysts to do some reading on that site. My husband also found a couple Facebook groups: Tarlov Cyst Society and Arachnoiditis Society for Awareness and Prevention. Hopefully this helps you out. Hoping for a low level pain day for everyone! Take care!
@cake
I am in Lakewood, WI which is about 1.5 hours straight north of Green Bay. A pain management doctor should be able to help with the PN pain. You may also want to add an integrative pain specialist to your team of providers and ask that they work together. This is what I've done and it has helped tremendously. Good luck to you, take care!