Pudendal nerve compromised during elective surgery.

[Music1945]

Greetings to all from a newbie’s first post.

I am looking for support from persons with a sim liar experience as mine.

Almost five years ago I had an operation to insert an “atoms sling” to control urinary incontinence.

During the procedure my pudendal nerve was injured.

This resulted in: my being unable to sit, unable to drive, constant pain, unable to focus properly because of narcotics and nerve drugs, unable to work, travel or socialize, constant urinary incontinence: all day and every day for almost five years.

Not nice!

There are many operations and events since this started but for now I need to find people with similar experience to see how they coped.

Thanks for any advice or other sites that could be useful.

Drew

[EffieT]

Hello Music1945

I am so sorry to read about your awful situation. It's debilitating to be in constant pain.

I do not have a similar situation except that I have an irritated pudendal nerve that causes me a lot of pain in my pelvic area for the past 3 years, and I live in Toronto. I have been to all kinds of specialists and have and have an appointment with another in a couple of months.

My pelvic physio has been more helpful than the doctors.

Where are you located?

[Music1945 in reply to EffieT]

Hi EffieT, Thanks for your reply. I live in Ottawa now but TO was my home in the early 70’s. How did your pudendal nerve become irritated? Are you in constant pain? Have you had pudendal nerve blocks? Does this seem like a test Drew

[EffieT in reply to Music1945]

I haven't managed to get a clear answer or diagnosis yet. Unfortunately, Covid set things back in term of appointments etc. I'm waiting for imaging to see where the problem stems from. Nerve causing muscles to tighten or the other way round. I do have constant pain but it is not excruciating. I get Pelvic physio but do not take medications because of side effects. I do use CBD oil from time to time.

I did have a pudendal nerve block but it actually made things worse. It caused my gluteus muscle to spasm horribly which hasn't eased yet. This actually confused things because there are other pelvic nerves that could be irritated.

I hope you find some relief for your pain. It's definitely life altering and takes a huge toll.

[kalecolbe12]

There are a couple of Facebook sites Pudental neuralgia support and Pudental hope website are very informative and helpful

[KCP46]

I'm sorry to hear of your experience. Mine is the same from 4 years ago. Only my surgery was to cauterise an ectropion. I've been in agony since. One short term lidocaine injection block gave 3 hours relief. Happy to chat x

[pizon]

Hello and I too am sorry to hear of you pain…I am in the U.S…5 years ago I had my surgery to correct a prolapsed bladder it happened all at once not over time as with most women I was dressing and felt a thump down there I went from 0/to 3 with a complete prolapse to be at 4 needless to say I could not even walk without discomfort…I believe this was the start of my p/n the corrective surgery (sewn up no mesh) made it much worse..I feel as if I have a ball in my vagina and if I over exhurt myself it becomes raw and sore like sand paper…..in the beginning I could not sit or walk….I tried all the meds 6 different ones I could not stand the side effects but what was even worse was the misdiagnosed for a year and a half I was misdiagnosed by a specialist I finally went to a pelvic pain Dr. Once I was diagnosed with p/n I started working with a herbalist and read the book by Amy Stein “Healing pelvic pain” and a yoga work out by Dustine Miller “Your Pace yoga for pelvic pain” I also meditate…I take valerian root and hops casuals up to 3 times a day these things have truly saved my life…I am now able to sit up to 2 hours I can drive although that is what bothers me the most…stress also causes pain..I have learned to live again with limitations….everyone’s journey is different my advise is to read the book and practice on a daily basis what she outlines in the book….I hope this is helpful…I think the most important thing I have learned I’d that I am in charge of my body…and there was and is no magic pill to take this condition away I had to learn to live with it and correct it as much as possible…I do not think we give our God made bodies enough credit as to what they can naturally do ….the dr.’s especially after Covid do not care at least not here…I too also had a nerve block it made it so much worse…I do hope this is helpful wishing you good health

[Desperateforrelief]

So sorry for your suffering! I was injured by transvaginal mesh for stress urinary incontinence in 2009. I have had 22 surgeries in 10 years to get it removed and to repair the damage. Both of my pudendal nerves were injured. I could not sit for more than 15 mins without severe pain. I have tried many different medical procedures in order to find relief. I get botox shots, I have had the interstim implanted. I have recently had pulsed radiofrequency ablation of my pudendal nerve which gave me 100% relief for about 3 months. Of everything I have tried this procedure has shown the best results. I wish you healing and comfort!

[RobertVerde]

So sorry to hear you have PN issues. I have found therapy to really work and this book helped to just give me information " A headache in the pelvis ". I am 5 years out with ON pain and managing it pretty well. Check out this website as well: pudendalhope.info/ there is a list of avaialb ePT's in your area on the site. Good luck!

[Puzzlelover54]

Hi, so sorry for your pain. I have had pudendal neuropathy for over 22 years. I have had many different types of treatment - some of them have given me some levels of success. Some other treatments were of no help. I would get a really good pain management specialist or someone who specializes in pelvic pain conditions. Unfortunately, my experience with medical professionals here in the U.S. is that a lot of them aren't familiar with PN. Research as much as you can. The internet has an abundance of great resources. As well as any number of fantastic support groups (which do contain male patients) on Facebook. These groups have helped me a lot. I am a devout Catholic and so my strong faith in Jesus has gotten me through some really rough times over the years. I had to learn how to "accept" as best as I could and now, I try to concentrate on taking one day at a time. I have actually written my own book. It's a memoir entitled, "Behind the Tapestry: My Discovery of God's Grace Amidst Chronic Pain and Loss." It is available on Amazon. Or you could head to my website: authormrosepeluso.com. And I have a FB page. When you go to Facebook just put in the Search Bar: @memoirbehindthetapestry. There is a lot of valuable info. on my FB page and I also post there - from time to time - links and posts to other resources. I will keep you in my prayers and wish you all the best. Hang in there. Don't give up. God has your back. Keep educating yourself and advocating for yourself. No one knows your body and your pain better than you and don't let any medical professional convince you of anything else. God Bless and take care. Peace, Maryanne.

[Beaverkill]

HelloWife is basically useless, same situation had back surgery, I think rods and screws touching pudend nerve cant find doctor with knowledge to remove pain

😕

[EffieT]

Hello Music1945. Just letting you know of a great Canadian website: pelvichealthsolutions.ca/They have all kinds of info plus names of physios in your area if you need one.

[Konagirl60 in reply to EffieT]

Hi EffieT. I just looked at that sight and read the section on pudendal neuralgia.

There is absolutely no mention of any doctor who can decompress the pudendal nerve in Canada.

I had entrapment in three places. Ten Vancouver, Canada doctors gas lighted me. I was never seen in a Pain Clinic as my GP said I would be. I was seen on a Medicine Ward. I never filled out Pain Clinic Intake forms. All doctors did was prescribe sedative meds that were useless.

That sight is wrong. I couldn’t lie down at all. I couldn’t sleep. I almost died of severe life threatening sleep deprivation and intractable nerve pain,

I had incorrectly done nerve blocks. I knew it was a severe pudendal nerve injury but my pain specialist said I had vulvodynia. NOT!

So, I don’t think it’s a very helpful sight for anyone with severe intractable pudendal nerve pain. Just my opinion.