1. < Chronic Pain

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.

lioness | @lioness | Feb 20, 2020
In reply to @donfeld "Yes" + (show)
@donfeld

Yes

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@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

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swift | @swift | Feb 20, 2020
In reply to @lioness "@swift Thanks for posting on naturel products for pain I've been a advocate for naturel products..." + (show)
@lioness

@swift Thanks for posting on naturel products for pain I've been a advocate for naturel products and essential oils a long time as @, Parrotqueen I mix my own oils at home just for me I was interested in the oil for nerve pain can you elaborate on this ? Do you use it straight or in carrier oil,?

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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

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1 reply
Donald | @donfeld | Feb 20, 2020
In reply to @lioness "@donfield Hi A good place to start is print out a form from Essential OIl.com they..." + (show)
@lioness

@donfield Hi A good place to start is print out a form from Essential OIl.com they will give you the oils that help with certain diseases and how to mix then or use them without the carrier oil like Almond or coconut oil the fractured oil and others. The chart on the oils will help you . Depends on what you are using the Eucalyptus for if you rub it on by itself SOme oils you can ingest others are only used in a diffuser so to know exactly how you want to use the oils you should get a chart on the oils and how to use them . I would do your own research on them ,the internet is full of information. Essential oils.com will help you Thanks for your interest.

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Thanks for info.

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lioness | @lioness | Feb 20, 2020
In reply to @swift "Hi my previous lioness, so happy you love to use natural resources too ; I'd use..." + (show)
@swift

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

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@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

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stephpez | @stephpez | Feb 21, 2020
In reply to @qball2019 "I understand your pain because I suffer from pudendal neuralgia as well. It's from Tarlov cysts..." + (show)
@qball2019

I understand your pain because I suffer from pudendal neuralgia as well. It's from Tarlov cysts that I have in my sacral area. I'm currently waiting for a surgery date for those and am hoping the neuralgia will subside with minimal nerve damage.

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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?

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1 reply
cake | @cake | Mar 7, 2020
In reply to @nickyfriskel "I saw my new doc for the first time today... He's a pelvic pain specialist. Dr..." + (show)
@nickyfriskel

I saw my new doc for the first time today... He's a pelvic pain specialist. Dr Michael Hibner in phx AZ. He's one of only 10 specialists in this field in the US and patients come here to see him from other countries as well as out of state. If you Google him you'll find lots of info.... He also has a couple interviews on you tube. He was very knowledgeable, considerate and caring... He gave me some hope. I saw his physical therapist first who was amazing in assessing my problem! Stay strong and I hope you can get some relief

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Hi Nicky, did you get some relief from Dr. Hibner? I think I may have PN as well, not sure.

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cake | @cake | Mar 7, 2020
In reply to @dmburns54 "Hi @lorid, I injured my Pudendal Nerve in 1995 and had surgery in 2001 at the..." + (show)
@dmburns54

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

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Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?

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2 replies
qball2019 | @qball2019 | Mar 8, 2020
In reply to @stephpez "I know this post is from a while ago, but I was wondering if you had..." + (show)
@stephpez

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?

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@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!

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1 reply
qball2019 | @qball2019 | Mar 8, 2020
In reply to @bkruppa "Good feedback. Thanks. My wife's situation has one added symptom that I don't see in any..." + (show)
@bkruppa

Good feedback. Thanks.

My wife's situation has one added symptom that I don't see in any of these discussions and that is swelling in the area of pain. The question would be does a compressed/irritated/entrapped nerve cause swelling? The other condition that my wife experiences is the level of pain varies. Most of the time it is a 7 or 8 while other times it is a 2, 3, or 4. We try to look back to see what she did different but never can put a good case together as to the cause. Any ideas? Different muscle tensions?

Saying that everything is connected together is good information. I notice that massaging of muscles in the hip area and upper buttocks area gives a lot of help to her and these areas are far removed from her areas of pain. I understand that there is a sacrotuberous muscle in the buttocks that is directly involved with the pudendal nerve and if it is tensed up it will compress the nerve and cause the type of pain that is being discussed here. Usually it takes an experienced therapist to massage this properly to relieve the tension.

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@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!

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qball2019 | @qball2019 | Mar 8, 2020
In reply to @cake "Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?" + (show)
@cake

Hi Darrell, I'm near Milwaukee, Wi and may have PN. Can you help?

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@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!

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