Desesperada! Newbie at Pudend Neuralgia

[RedBlue]

I’m 53 and I’m new here. I have been active and involved with sports all my life. I have been wandering from one doctor to another for the last 5 years. First diagnosed with pubalgia, later with arthrosis of pelvic symphysis (did 8 weeks of therapy and ended up being infiltrated with cortisone and had to stop playing tennis). I went to another doctor for rectal pain that it was diagnosed as proctalgia fugax. I got and hysterectomy for other reasons 4 years ago. Now after an isquitobial elongation that wouldn’t heal I was told that I have pudend neuralgia and finally I think this I what is been happening to me all these time. I’m scared of the pain and scared of what I read in the internet. I love yoga and I would hate to have to give that up too. In my home I can’t find an especialist on pelvic floor. I was told that my pelvic floor muscles are hypertonic. My first language isn’t English so I hope this make senses.....please , help!

[SuzyQ]

Hi there RedBlue,

I don’t know whereabouts you live, but I was just talking on another post about finding a pelvic floor physiotherapist in the UK.

I was encouraged to search on Google again and I found this link...

pelvicphysiotherapy.com/lis...

It has a list of specialists all throughout Europe. Search for your country and I hope you find someone who is nearby who can help you.

I found a lady who can work on trigger points for Pudendal Neuralgia. I am delighted, and will contact her tomorrow.

I hope that this helps you too.

All best wishes,

Suzy xx

[Cherodgers in reply to SuzyQ]

Hello,

I have a nerve stimulator by Medtronic the leads are thin and placed above the sacral nerve and it constantly taps on my Pudendal Nerve it was inserted by a Neuroscience pelvic specialist in Baltimore Maryland Dr David Gordon so far it’s helped with my incontenance and some of the nerve pain I will be having a third lead put in this month hopefully. This may be an option for you.

[RedBlue in reply to Cherodgers]

Thank you! I will read about this, sounds promising. I hope you get better and that the third lead works wonders for your pain

[RedBlue in reply to SuzyQ]

Thank you! I doing a reasearch to find a Pelvic floor especialist. I live in México. I just had a triger point therapy and it worsened things, but i now that sometimes this happens before getting better. Thanks for taking the time to answer me

[Pelviccrusader in reply to RedBlue]

I have similar pelvic issues and have been to many many practitioners. There is only one person that was able to help me. Unfortunately she is in Maryland and it appears you are in Mexico. If you are willing to travel, I would advise you contact Functional physical therapy in Rockville Maryland And ask for Gabriela. I cannot put into words how much better she is compared to all of the other physical therapists. However, it does sound like you are making progress; if the treatment Triggers your symptoms it means you may have found the source of the problem and you should probably give that a chance before trying anybody distant.

[Brandi16 in reply to Pelviccrusader]

There is a Dr. Hibner in Arizona. He’s one of the best for treating Pudendal Neuralgia and Compression of the Pudendal Nerve.

[Susiebic in reply to Brandi16]

Costellonos did my surgery. 60 to 70 percent relief. I still use CBD suppositories for pain. Annoying and sometimes I want to give up, but I keep trying to see if anyone can help to relieve the rest.

[Aryah in reply to Susiebic]

Where do you get the CBD suppositories? Dr castellanos os my doctor as well. He mentioned them but when I got a medical marijuana card (which expired) no one knew where I could get him. I don’t seem to be a candidate for surgery. Done Botox and other injections with limited success.

[Susiebic in reply to Aryah]

You need your card updated. I use CBD isolate and Rick Simpson oil. I make my own. This is something I have a hard time explaining on here. The dispensary can give you info on these items. I gram CBD isolate, 1/2 gram RSO, disolved in a double boiler with natural cocoa butter and small amount coconut oil natural. Actually I just put a heavy glass measuring cup in a pan of water. Melt it to make 2 cups with RSO and CBD. Pour into silicone molds that you use to make candy. It takes some effort, but it gets me relief and I only use it at night. You can use them in a flare up too. If I go without using them I can really tell. It has to be regular use. I use a light pad because it runs out a little. That will probably be up to you how to handle that.

[Aryah in reply to Susiebic]

I found it thanks.

[kalecolbe12 in reply to Susiebic]

Where can I get CBD suppositories?

[Susiebic in reply to kalecolbe12]

Make your own. See above post. You need a medical marijuana card.

[Whangareinik]

Sorry to hear you are in pain. My story is I had a hysterectomy which involved a treatment injury to my pudendal nerve, it has effected every level of my life, anxiety, constant burning, no energy. I feel like I have lost my identity and I have nerve blocks, sometimes I have slight respite other times it’s worse. I live in NZ and very little is known about it. I have weekly one to one yoga and physio. I have medical insurance luckily, only because it was a mis adventure with original surgeon. My life is ruined I have a 9 year old daughter who sees me cry every day. I grieve the loss of me....I also see a physiatrist and take pain meds and relaxing meds. Yuk! On bad days I wish I could die. On good days, I drag myself through not knowing how I’m going to get through another day. I have been like this since March 2016. Good luck and I am sorry you are going through this. It’s hell on earth most days. Sorry it’s all doom and gloom, I’m sure there are more up beat positive threads but this is me, today.

[Brandi16 in reply to Whangareinik]

I know what you’re going through and I’m very sorry. I suffer from Pudendal Nerve Entrapment. I have had bilateral decompression surgery on both sides of my buttocks to release the nerves. I have a Spinal Cord Stimulator and a Medtronic intrathecal pain pump. I’ve been bedridden for 6 years due to excruciating pain that is now coming from my lower spine as well. I recently had another surgery on the left side of my buttocks. I have to give it until Jan/2019 to see if it actually worked. I wish you all well. I know what’s it’s like to mourn your former self and miss the outside world. I’ve lost friends family and my dignity but I try to be positive on a daily basis. God Bless

[Whangareinik in reply to Brandi16]

Goodness there are always people worse off than us but it sounds like you’ve been through Hell and Back. I’m nervous about the stimulator I just do t know whether to go through with that. I’m worried something else could go wrong! Do you physically have to press buttons or is it inside and you have no control over it. I would worry about pressing buttons etc too. I must say I am not bed ridden, if anything I keep going to keep my brain occupied which can be hard as I get tired but I feel like there is no such thing as Relax anymore as when I relax that’s when I notice how sore I am. Take care and God Bless you. Thank you for your time x

[Konagirl60 in reply to Whangareinik]

You must feel so isolated. How are you managing the pain? Can you sleep? Can you move? Can you sit? I feel for you. You sound like a busy Mom who just wants to be happy and get on with life like before. I hope you have some support? Have you been to a Pain specialist?

I traveled New Zealand when I was 24 years old. My boyfriend at the time and I hitch hiked all over both islands in 1983. What a beautiful country. I miss it and think of it fondly. I always remember to recommend it to young people as a great destination.

Be well. Have you had any success with natural supplements ir have you seen a Naturopath?