injury to pudendal nerve, pfcn and inferior cluneal nerve

I have similar issues, caused by multiple pelvic and abdominal surgeries over many years. My experience with a DRG was a disaster even though I have a competent pain doctor. I had mine removed. I’m very sorry you have to live with this. The single biggest help for me was finding a terrific pelvic floor physical therapist ( she treats both men and women). A combination of exercises, stretching, her hands-on treatment, and counseling/ teaching about how the pain cycle works in my brain has been enormously helpful. It has given me back some sense of control in my body. I have also spent some time with a pain psychologist as chronic pain rewires your brain and makes it harder to I interrupt that process. I learned ways to calm my nervous system. For me personally, with western medicine I felt like I was constantly chasing the next procedure or device or whatever to “solve” my problems. Now I have learned to live with it regardless if my pain is a 5 or an 8. (And yes, I pretty much have pain all the time except when I’m asleep .) I practice mindfulness too so I can try to stay in the present moment and not overthink. This may not be what you are looking for, but after living with this for five years, these things are what has helped me the most that aren’t meds. I think it’s really important to understand that mind- body connection and how/why your pain persists. Best wishes to you for the future. This is a club none of us wants to be in, and not an easy thing to talk about.

Thank you so much for your reply. Does your pain affect your ability to sit? That is the big conundrum for me…sitting is something one has to do in order to get from point A to point B or to eat or to socialize in any way. I did do the Mayo Clinic program last year and felt that it was not successful for me because my pain is compression pain and I am sitting on it. It’s like sitting on a broken bone on fire. I’m sorry that the DRG didn’t help you. It just would seem that if there is an injury and pain to the S2 to S4, the stimulator should help. It’s baffling as to why it helps one person but not the other. That said, I hear what you are saying about Western medicine. I am constantly trying to find a new procedure to help me. I have had at least 13 surgeries and too-many-to-count pain blocks and other procedures. I have literally flown all over the country to find the ‘right’ doctor for my issue. Are you able to socialize and enjoy life? For me, sitting is the worst…if I could sit with minimal pain, I could handle that.

YES! Sitting sucks! I live in Mpls and our sons and fams live in WA. We fly out 3-4 times a year. Ugh. I have two cushions that fold in half that I bought on Amazon that go Everywhere with me. Being female and carrying a purse or small backpack, it’s easy to put the smaller one in there. But regardless, I don’t care. That cushion goes Everywhere with me and I don’t care what people think. I simply can’t sit on wood or metal chairs or benches. But again, my PT has taught me very specific exercises and stretches to help loosen my glutes, hip flexors etc. plus internal work (yup- I know it sounds weird but it works) to soften internal trigger points. And I practice breathing techniques to help calm me wherever I go. So I do go to plays, movies, festivals etc. but I am mindful of my limits and listen to my body. If my bum has had enough, I head home. I’ve worked hard to train my brain that I can do these things and enjoy them while still taking care of myself, and being O.K. with having limits. My family and friends understand. I can absolutely feel your frustration. It is so limiting, embarrassing, frustrating, and socially awkward. It’s hard to describe how this condition can literally wreck you. Everybody else can SIT no problem!!!!!!! Again, been there, felt that, done that. When I finally stopped chasing another “cure” and learned to create my own toolbox of self- help techniques, things got better. It might be time to turn in a different direction and begin learning to like/love your body again instead feeling like it’s out to get you. Your brain gets stuck and you can help unstick it. I’m no guru or doc, but I have been in the ER countless times in the past, also had a gazillion procedures, and even “talked” my way into a mental health unit briefly because I simply could not deal with the pain anymore. (Diagnosed with major depressive episode minus suicidal ideation). That’s where I finally got hooked up with a P.T. and a pain psychologist, and I was on my way to a better life. I do have some medication I use if my pain is nuts. But I get out of bed now knowing I can do this instead of looking at my Google Calendar to see when the next appointment in the revolving door is. (I also have low-grade recurrent bladder cancer, osteoporosis, and GI stuff. So I get the doctor thing. OY). My very best wishes to you on this difficult journey. May you find hope and help.

@l73 I really appreciate you taking all this time to share your journey. For me, the motorcycle accident about did me in. I fractured nine bones, including the pelvis, sacrum, tail bone, pubic bone, back and ribs. I was a mess…in the hospital for five weeks including rehab. I did not want to die but didn’t want to live with the excruciating pain. After one year, I felt like I was healed. And then one year later the sitting pain started. I had a back doctor tell me that it was my back and did not one but TWO back surgeries all within six weeks. Aside from him making a ton of money, I think he was full of baloney. He knew that my pain was in my butt area but literally told me that the pain in my butt came from my back. My friends are husband/wife internal medicine doctors and the husband told me that tons and tons of people have herniated discs with no pain and don’t need surgery but I believed the surgeon…bad call on my part. As you stated, I, too, have had a zillion procedures. I love the direction you are taking. The program I took at Mayo Clinic is all about pain coming from the brain and I just don’t know why it didn’t help me, other than the fact that it’s compression pain from sitting. I am now wearing two stimulators…ridiculous! I sit with cushions and either ice or heat or put biofreeze on the area. The biofreeze does help. And, yes, I also have to travel to see my kids…two-hour plane to daughter and four-hour plane to son. But, I do what I have to do. Are you in any support group on Facebook? Would you ever consider connecting outside of this page?

Wow you have really been through the wringer. I am so sorry you suffered so much from your accident. I just cannot imagine… I have multiple woes as well, recent invasive skin cancer, an atrial flutter diagnosis ( no risk factors other than age and female), and now thrush from too much antibiotics to clear up a persistent UTI. This is exactly why I went the mental health route- you get a source of validation, somebody in your corner who is neutral but supportive so you can vent, and hopefully someone who will challenge your thinking so you can adopt some new habits to help yourself! My experience with FB has not been great. I find there is an awful lot of negativity. I empathize, but I don’t need more of that….i would consider communicating outside of this platform if you think that might be of help. If I could be of Any help to one person through this awful pelvic pain stuff I would be happy. And yes, I agree there are Way too many surgeons who are blaming back issues for a myriad of things that probably have little to do with your spine. (I agree with your very learned friends). Let me know what you’re thinking. For me, when I reached a point of endless frustration and was also ready to just give up ( but Not end my life) is when I finally decided to try a different route. It’s kinda like the journey to sobriety- not everybody needs to hit rock bottom before they decide to get help. But you know yourself best and those are your decisions to make. Sorry you’ve had to endure so much. Ugh. 🙁 P.S. There is a free app called Insight Timer with thousands of meditations on every subject you can think of and many lessons on breath work. I subscribed two years ago and use it daily, but there is still a ton there that is helpful and free.

@l73 the Mayo program did talk about meditation. It’s an entire program to reset one’s brain. Unfortunately, it didn’t work for me at all. Although you have gone a different route which has been a positive experience for you, it sounds as if you are still in a lot of pain. Also, is your pain psychologist telemedicine or in person? What state are you in? I’d love to connect with you outside of this site.

@dcdusek For me, the reason I started to practice mindfulness was to learn how stay in the present moment, and be accepting of whatever I’m feeling. I still do have pain, but my response to it is very, very different than it was five years ago when I was truly miserable. I can spend 20-30 minutes in meditation practice and actually lower my pain level a couple of notches. I relax physically and mentally, and its my nervous system that benefits. So it’s been worth it for me. I’m not focused on changing anything but rather observing how I feel- being nonjudgmental and kind to myself. It may sound like new-age junk but it isn’t. People have been practicing for thousands of years. I also get regular massage and acupuncture twice a month. To answer your other question, I prefer in- person therapy. Several people I know see their therapists by zoom. It’s really a personal preference. The important thing is to find someone you click with. There are many talented psychologists out there that have experience working with people who have chronic conditions. Many pain clinics have psychologists/therapists on staff. Perhaps you have some trauma as well as a result of your accident? I live about an hour and twenty minutes north of the Mayo Clinic in Rochester MN, in a suburb of the Twin Cities.

Wow, so you are close to Mayo. That’s nice. I live in Texas so it was a long and expensive trip to Mayo in Florida. We were there for almost one month. We made reservations for a cruise recently to the far east, only to discover that the cruise port is a distance from some of the main attractions so we are going to have to change the cruise. It’s just something I have to accept. At lease I give myself credit for trying.