1. < Chronic Pain

Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

I have not been on connect for quite a while since I have only recently received a diagnosis (one of many probably to come) I am looking for someone/anyone who has the pain from a surgical injury of sorts to this nerve to talk to. Is there anyone out there with Pudendal Neuralgia on connect? Thank you!

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

romans8 | @romans8 | Jun 14, 2023
In reply to @westcom "I have a pudendal nerve block scheduled in a few weeks. I’ve read that most are..." + (show)
@westcom

I have a pudendal nerve block scheduled in a few weeks. I’ve read that most are done guided by CT. However, my Pain Doc uses X-ray guidance instead. I’m wondering if anyone has had this type of block and how successful was it?

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I have the same question. I have been diagnosed with pudendal neuralgia and am scheduled for a pudendal nerve block at Mayo in a few weeks. Has anyone else had that treatment? It’s a last resort for me. I’ve had 2 years of pelvic pt, trigger point injections, and been on Gabapentin for 3 years for small fiber neuropathy.

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1 reply
bunnybear | @bunnybear | Jun 17, 2023
In reply to @pita444help "That would unfortunately be me. I've had this problem for over 25 years. My pain is..." + (show)
@pita444help

That would unfortunately be me.
I've had this problem for over 25 years. My pain is in the left tailbone and anus area. (How lovely).
Only relief has been Clozepam .5mg x2 per day along with Effexor which is an anti depressant. Her to help or talk. I'm back in this dreaded horse because of the opiod crisis and the doctor wanted me to get off Clozepam which I have been fir two weeks. I'm now just like it was day 1 with pain. I'm going back to Doctor to get back on them.

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I’ve had pudendal entrapment in the exact same place as you. (How lovely indeed!) for 10 years at least. Had every treatment in the book and every medicine with nothing helping except opioids and NSAIDS till recently. Now I can’t take either due to side effects. I now have a spinal cord stimulator and it has definitely relieved pain in this area. But you have to be patient initially in getting the settings right for your particular problem areas. Another thing that has helped is using a “balance disc” to sit on (looks like a flattened, un-inflated rubber ball, recommended by my PT). Amazon has them. This is really helpful! And finally, I get help from Cymbalta (warning! After extreme, debilitating nausea on first trial, I had to start with a low dose along with the anti-nausea medication Promethizine. Very helpful.) I also get help from Lyrica. Good luck!

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jobby99 | @jobby99 | Jun 23, 2023
In reply to @pita444help "That would unfortunately be me. I've had this problem for over 25 years. My pain is..." + (show)
@pita444help

That would unfortunately be me.
I've had this problem for over 25 years. My pain is in the left tailbone and anus area. (How lovely).
Only relief has been Clozepam .5mg x2 per day along with Effexor which is an anti depressant. Her to help or talk. I'm back in this dreaded horse because of the opiod crisis and the doctor wanted me to get off Clozepam which I have been fir two weeks. I'm now just like it was day 1 with pain. I'm going back to Doctor to get back on them.

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Tailbone pain is often medial cluneal neuralgia but nobody really treats that takes insurance besides pain mgt injections.

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jobby99 | @jobby99 | Jun 23, 2023

Anyone have pudendal nerve release surgery? Results? Recommendations?

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micyew | @micyew | Jun 27, 2023

Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help this girl I care about through it. She explains that walking makes it hurt like hell at night and sitting down hurts a lot. I guess for starters I’m looking for ways to help her manage her pain and ways maybe you have found helpful.

I am also looking for clothing and shoe ideas for her that are comfortable. She has told me sneakers and such are painful and she likes to wear sandals because they help. Do you have any recommendations for these like websites to order from or something to help her feel better about her clothing as she is upset she can’t wear a lot these days.

Lastly I want to ask, what are things you have found that she could do for fun. She gets sad at her life before this and I want to help her become happy and enjoy life some more again. What are things you have found to be enjoyable and ways she could start to be happy in life despite this? What activities do you think are manageable for her?

I appreciate all your advice and anything helps out so much. Thank you in advance.

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4 replies
mikaylar | @mikaylar | Jun 28, 2023
In reply to @micyew "Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help..." + (show)
@micyew

Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help this girl I care about through it. She explains that walking makes it hurt like hell at night and sitting down hurts a lot. I guess for starters I’m looking for ways to help her manage her pain and ways maybe you have found helpful.

I am also looking for clothing and shoe ideas for her that are comfortable. She has told me sneakers and such are painful and she likes to wear sandals because they help. Do you have any recommendations for these like websites to order from or something to help her feel better about her clothing as she is upset she can’t wear a lot these days.

Lastly I want to ask, what are things you have found that she could do for fun. She gets sad at her life before this and I want to help her become happy and enjoy life some more again. What are things you have found to be enjoyable and ways she could start to be happy in life despite this? What activities do you think are manageable for her?

I appreciate all your advice and anything helps out so much. Thank you in advance.

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This is a monster. I sat on a donut for 14 years. The only thing that worked after all that time was anti-seizure medicine for 2 weeks that I was taking for an unrelated matter. It went away instantly after 2 weeks.

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1 reply
westcom | @westcom | Jun 28, 2023
In reply to @micyew "Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help..." + (show)
@micyew

Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help this girl I care about through it. She explains that walking makes it hurt like hell at night and sitting down hurts a lot. I guess for starters I’m looking for ways to help her manage her pain and ways maybe you have found helpful.

I am also looking for clothing and shoe ideas for her that are comfortable. She has told me sneakers and such are painful and she likes to wear sandals because they help. Do you have any recommendations for these like websites to order from or something to help her feel better about her clothing as she is upset she can’t wear a lot these days.

Lastly I want to ask, what are things you have found that she could do for fun. She gets sad at her life before this and I want to help her become happy and enjoy life some more again. What are things you have found to be enjoyable and ways she could start to be happy in life despite this? What activities do you think are manageable for her?

I appreciate all your advice and anything helps out so much. Thank you in advance.

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Put pudendal neuralgia in the Connect search bar and previous conversations on this topic will come up. Hopefully some will help answer your questions.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 28, 2023
In reply to @micyew "Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help..." + (show)
@micyew

Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help this girl I care about through it. She explains that walking makes it hurt like hell at night and sitting down hurts a lot. I guess for starters I’m looking for ways to help her manage her pain and ways maybe you have found helpful.

I am also looking for clothing and shoe ideas for her that are comfortable. She has told me sneakers and such are painful and she likes to wear sandals because they help. Do you have any recommendations for these like websites to order from or something to help her feel better about her clothing as she is upset she can’t wear a lot these days.

Lastly I want to ask, what are things you have found that she could do for fun. She gets sad at her life before this and I want to help her become happy and enjoy life some more again. What are things you have found to be enjoyable and ways she could start to be happy in life despite this? What activities do you think are manageable for her?

I appreciate all your advice and anything helps out so much. Thank you in advance.

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Hello @micyew, I would like to add my welcome to Connect along with @mikaylar @westom and others. There is another discussion where you can learn what others with pudendal neuralgia have shared.
--- Anyone out there diagnosed with Pudendal Neuralgia?: https://connect.mayoclinic.org/discussion/anyone-out-there-diagnosed-with-pudendal-neuralgia/.

You might also find some helpful information on the Pudendal Neuralgia Association website here - https://www.pudendalassociation.org/.

Have her doctors suggested or tried any treatments to help her symptoms?

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Amanda Roe | @amandajro | Jun 28, 2023
In reply to @micyew "Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help..." + (show)
@micyew

Hey, not only am I trying to understand Pudendal Neuralgia but I also want to help this girl I care about through it. She explains that walking makes it hurt like hell at night and sitting down hurts a lot. I guess for starters I’m looking for ways to help her manage her pain and ways maybe you have found helpful.

I am also looking for clothing and shoe ideas for her that are comfortable. She has told me sneakers and such are painful and she likes to wear sandals because they help. Do you have any recommendations for these like websites to order from or something to help her feel better about her clothing as she is upset she can’t wear a lot these days.

Lastly I want to ask, what are things you have found that she could do for fun. She gets sad at her life before this and I want to help her become happy and enjoy life some more again. What are things you have found to be enjoyable and ways she could start to be happy in life despite this? What activities do you think are manageable for her?

I appreciate all your advice and anything helps out so much. Thank you in advance.

Jump to this post

Hello @micyew and welcome to Mayo Clinic Connect. How wonderful of you to want to learn more to help someone in your life. I am hoping members @mikaylar @westcom and @johnbishop who have come to connect with you can provide you with some information.

What are some of her favorite interest/hobbies currently?

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hennykatz | @hennykatz | Aug 25, 2023

Any suggestions what to wear under skirts when it gets cold? Leggings seems impossible!

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