Anyone out there diagnosed with Pudendal Neuralgia?
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.
Dr’s have no idea had bad the pain is. No one does unless you have it. Have you had nerve testing done yet? Good luck with your MRI. Do know know what may have started the pain?
I have had 3 vaginal births…. One forceps and my last one had shoulder distocia…. She literally got stuck because she was so big… They almost broke her clavicals to get her out! Then I had a vaginal hysterectomy… Then a 6 hour pelvic organ repair… Then a bladder mesh… So take your pick I guess lol all of these things can cause pudendal neuralgia…. I can't even pin point the offset… It seemed to get worse over the years until now It's every day This chronic pain really wears you down… I have clinical depression but this has certainly made things much worse… Somedays I just don't want to wake up… Going to work and looking after people can be so hard…. When all I can think about is my Crotch
@nickyfriskel Ouch that has to hurt . I had a forcep delivery but have gotten over it long ago. Have you ever looked at Boswellia Sterate ? for pain Its Frankersense another name. Maybe it would help you
I’ll look into it thank you!
I am not sure if I am doing this mayo/connect right it seems to get confusing so many posts to read and then old posts get a new message and I don't know maybe it is just me and a lot of confusion. Made me laugh when you said all you can think about is your crotch, I understand it flipping hurts all day long. I am worn down also. Many days I don't want to get up either. I do feel your pain. I have not had a hysterectomy I had a CT myelogram and immediately after the needle came out and I had to move onto my side I went into extreme pain. I was told I had a spasm and I was told I have pelvic floor disfunction and I have central sensitization and also now atrophic pelvic atrophy and muscle atrophy and I could go on and on but it took me three years of crying and pleading with Dr's to help me and tell me what happened and something else was wrong and no one would say anything except you need pain management. A couple top surgeons would not even see me because no one wanted to be involved. Misdiagnosis and let me tell you the medication I am on will really mess with you. Sorry, my mind wanders and I am so bad at concentrating. I clench my teeth all day because of the pain and now have issues with severe TMJ. No one sent me to a neurologist and that is the key to me finally getting answers and getting my diagnosis of Pudendal Neuralgia. I cant sleep without medication and I am real grouchy and cannot ever ride a bike again or take nice long walks without being in awful pain because I have no muscles left and have a post wall prolapse and I am not a surgical candidate to lift anything back up where it belongs. I have now a tear outside the rectal wall and so forth and so on. I am not good with all the medical terms and all but you can get the idea. I am miserable. Everyday. One procedure and my life changed and no one can tell me why or how. I left my job because the pain was so bad standing and sitting and just being around people. I was denied disability because the Dr's said I had a spasm. Anyways I fought it by having the nerve block into the pudendal nerve and I have nerve damage. Not one Doctor helped me with finding out what was wrong. I pushed and pushed and never gave up. How can these Doctor's live with themselves when they knew darn well I had nerve damage and told me I had to just go to a pain management clinic to help with my taking pain medication to wean off. This is why I don't get on and write much, lol I ramble on. The nerve pain is progressing and it has affected my gait and my left leg/knee and now my hip joint. Are you working? I wish I had a Doctor who cared enough to have sent me to a neurologist right away after Bio Feedback and pelvic floor therapy and chemodenervation was done and all kinds of other fun things and nothing helped and still not one Dr. sent me to a neurologist. I will not have my nerves burned or be a experiment. I don't want to do anything really. I lost and I suffer. Not fair. I am worn out and have no idea what is going to happen in the future if this is going to get worse. I am on Cymbalta and wellbuterin and Duloxetine and Oxycodone. Still have constant pain but without it is intolerable. Thanks for listening. Look forward to reading your messages.
I can relate.. I’m on anti depressants too… I am so lucky to be in AZ…. I'm seeing one of the top 10 doctors/surgeons who deal with this on Wednesday and I'm hopeful he can help. Thank you for responding to my post… It's hard to stay positive but I try…. I hope you find some relief.
Who is that Dr?
Dr Michael Hibner
Yes… Look him up… He's one of the top 3 docs for this in the US
Well guys… I get to have a CT guided nerve block on Jan 21… Then I go to counseling with Dr Hibner on the 24th before the procedure on the 31st… Botox into the pelvic floor… A nerve block internally on either side of the pudendal nerve and also a diagnostic ultrasound to make sure all the veins are working well… I'm praying so hard that this will work… The doc says he's had a lot of success so I'll keep you all posted ❣️