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5 days ago · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

I feel so bad reading your post. I posted under pudendal neuralgia a few years back and no one really responded. Who gave your mother the diagnosis of PN? did she have testing done to determine that? The Doctor who sent your mom for that nerve testing should have the name of a specialist to refer your mom to see. It is a very rare disease and very, very painful and something that will not go away. This has changed my life drastically and let me tell you Doctor's don't really seem to understand the psychological effects it can have on a person. How long has your mom had this pain? Do you have any idea how this happened? Are you sure this is not entrapment of the pudendal nerve? Has your mom been to a uro-gynecologist? Sorry for all the questions but just wondering what all you have done so far.

Thu, Mar 5 11:05pm · Chronic pelvic pain syndrome treatment in Chronic Pain

To @rstollery, I feel your discomfort even though mine is a bit different. I did have months of pelvic floor therapy that did nothing to help but to only aggravate my situation and then almost a year later end up going for bio feedback therapy that was awful and a Tens unit zapping machine that only made my pain worse. Doctors assumed I had a muscle spasm and never did further checking to find out what the real problem was. I was in tears constantly but no one listened to me all my muscles in my rectum and pelvic area are strophic. My pudendal nerve was nicked and not properly handled properly for almost 2+ yrs so I have lost all muscle strength and nutrients to the ligaments. I am not a surgical candidate to have my vagina vault prolapse fixed. Nothing strong enough to attach my bladder and uterus up with. Anal tightness I don’t know what you do for that. Nice warm baths, muscle relaxers, every Doctor has something different to say. How long have you had this problem? Min started 41/2 yrs ago was just fine until a nerve was affected. Happened immediately. Dr’s office never even called to check up on me. My life is forever changed as a very negative person now unfortunately. I hope you get the right help. I have to take Metamucil Dailey And drink prune juice and eat a few pries and some days apple juice so I don't get constipated. Hope that was not to boring. Good luck. I understand

Wed, Jan 15 1:03pm · Pain Relieve in Chronic Pain

Thank you so much for sharing. A very interesting read 😉

Mon, Jan 13 2:22pm · Pain Relieve in Chronic Pain

Great question! Hope someone has first hand answer. Be anxious also for reply.

Dec 21, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I so relate to all you wrote. Thank you.

Dec 15, 2019 · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

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.

Dec 14, 2019 · Anyone out there diagnosed with Pudendal Neuralgia? in Brain & Nervous System

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?

Nov 19, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I would love to know also if anyone has ever tried the CBD ointment. Great idea! I was diagnosed a year ago with pudendal neuralgia after three years of tremendous pain and yes it is still here but medications are keeping me going even though the pain is constant. I had to fight tooth and nail and switch to multiple different doctor's to find my answer. I tried the oil drops and it was a waste for me also. I suppose the ointment maybe also but I would love to hear how it may work for someone else with PNE. I agree, I think we will be suffering for the rest of are lives unfortunately. I am not a fan having nerves burned and have heard horror stories about it and have also heard success stories. Look forward to seeing what you find out with the ointment. Good luck!