Pain in the butt - Can't sit down

I too have pelvic pain/pudendal neuralgia and my sitting pain came after I had a prostatectomy inSeptember2022 but I had pelvic pains/ neuralgia prior to surgery. The surgery actually got rid pain in the front area of the pelvis. You should read “A Headache in the Pelvis” by David Wise and Rodney Anderson.
My pelvic pain started over 15 years ago. I had microwave for BPH. Then I had pain in the front pelvic area. I was treated with antibiotics for months for prostatasis,had MRI, ultrasound, blood test etc and finally surgery since they said there was a large amount of blockage of vessels. This did not work and I just learned to live with pelvic pain which would come and go.
About three years ago when the nerve was sensitive I would get urinary urge incontinence and frequency, spiking pains in the rectum, groin pain and pain at the tip of penis along with the previous pains. The nerve sensitivity became chronic in March of last year. After the prostatectomy I had the bad sitting pain along with the feeling I have to go all the time. I went to PT and they found trigger points for the rectum pain and gave me pelvic stretching to do. It has helped some and sitting on a u shaped pillow helps. The nerve seems to make tightening sphincter muscles and other pelvic muscles to cause magnified aching pain. While I am trying to minimize and manage the symptoms of pain, lack of sleep, incontinence, doing different things causes pain, even walking. I have not been able to stop the nerve from making everything over sensitive yet. I am told I need to lower my anxiety and stress as well as muscle relaxation to achieve this. Good luck to you after all these years I am thinking luck would help.

I had anal prolapse and have had it corrected but my dad had sciatica badly. I made sure he, and I, had Zero Gravity Chairs……a cheap Godsend for pain relief …….I also made sure we had a lot of Topricin x10 lotion to calm areas and lastly I put us both in Fit Flop shoes, slippers and sandals…..complete game changer for pair. They are on Amazon . …..all three are as well as the hemroid pillows that blow up! A cheap and great fix for all things south!!!

Mine is exactly the same but I didn’t have the prostatectomy. I do have bph but I deal with it. Funny thing is. I tell people I know I have a headache or a toothache in my butthole and penis an open nerve. Same thing happens excruciating pain. I’m having a pain pump trial implant on Monday and hopeful that it will help. So tired of the ups and downs with my medication. Never know how I’m going to feel. I seem to be good one day and then in the bed for 5 days. I’ve had 2 stimulator implanted and removed they didn’t work for my type of pain. I’m not saying they don’t work just didn’t work for me. So 4 surgeries for that caused more damage to the nerve. I’ve had 3 second opinions for a pain pump and they all suggested it could work. I’ve read some good testimonials from this site and they have done a 180 with their pain. So at 61 yrs old what is left. I don’t want to live another 20 years like this so let’s try again. Very hopeful. I said no more surgeries after the last one but I’m at my last straw.

I had Tarlov cyst surgery in 2015. And a revision in 2016 due to a spinal cord fluid leak. Now living in excruciating debilitating pudendal neuralgia pain. Pain while sitting, standing. Laying on my side. The only thing that helps is laying flat on my stomach for hours. I’ve had every test and every injection done and all leads to pudendal neuralgia. I’ve had 2 unsuccessful stimulator implants done since 2017, implanted and removed. I’ve had 3 second opinions about a pain pump. No dr will do surgery underneath the sacrum it’s just to dangerous could cause paralysis. I’m going in for a second pain pump trial next Monday and have had heard good success testimonials from this site so I’m scared to have another surgery but I’m at the end of my rope and at 61 years old I don’t think I would like to live like this for another 20 years? So I said no more surgery after the last surgery but here we go again. Can’t stop trying and can’t stay like this either so for now signing off in great hopes again for the third time.

My goodness. Our stories are very similar. I have come to the reality that this is at good as it gets. I am home bound, as dressing and sitting are the worst things for me to do. I think I have tried too many interventions, spinal chord stimulator (twice), Calmare therapy, a peripheral nerve stimulator and numerous meds, vitamins, oils, creams (I also have allodynia on my lower back and bum. All the areas where I had the dreadful shingles. Currently, I am trying red light therapy. I haven't given up but the increase in pain has made things difficult. I am sorry you're not feeling well.

Thanks for the reply, I thought I was the only one! Think about the pain pump I am going through with it I think it is my last hope. Good luck to you. We all need luck on our side.

I’m so sad to hear how you are and have suffered. Many years ago I got two one inch fissures in my rectum and it lead to two years of pain that only God could describe. The reason I’m bringing this up is because as far fetched as this may seem…I’m wondering if you might have part of the problem that the fissures started in me. When there is a tear in a muscle it starts a spasm in the muscle. I got terrible muscle spasms in the sphincter muscle in my rectum. I’m wondering if some how something has set off that sphincter muscle spasm in your rectum. Crazy but an easy way to find out is to get a doc to prescribe a muscle relaxer named Cyclobenzapr. It is non narcotic and it’s the only med I’ve taken to stop it but it stops it immediately. Good luck.

Has anyone been diagnosed with “Post-surgical Inflammatory Neuropathy?” If so, how do you deal with the pain?

The pain pump trial usually involves a pain specialist making a series of 2 injections using some kind of morphine mix into the intrathecal space around the spinal cord. My first injection did nothing. The second injection caused my pain level to drop from about an 8 to a 2. It felt great. Except that I was still aware of the "lumps" in my buttocks (just not painful, which I can handle).

Thank you very much I have had my gastrointestinal dr look and my pelvic physical therapist looked at me. Both found nothing and concluded that it’s the tiny nerve endings misfiring. It’s their only explanation. I really appreciate you sharing this and thank you very kindly.