Anyone out there diagnosed with Pudendal Neuralgia?

Posted by LeighO57 @leigho55, Jun 5, 2018

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!

@nickyfriskel

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

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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.

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@leigho55

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.

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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.

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@nickyfriskel

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.

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Who is that Dr?

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In reply to @gtassithomas "Who is that Dr?" + (show)
@gtassithomas

Who is that Dr?

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Dr Michael Hibner

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In reply to @nickyfriskel "Dr Michael Hibner" + (show)
@nickyfriskel

Dr Michael Hibner

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Yes… Look him up… He's one of the top 3 docs for this in the US

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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 ❣️

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@nickyfriskel

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 ❣️

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Thanks for sharing. We will be waiting for good news. Congratulations on getting the surgeon you wanted in a time frame that works. Be safe and protected for this procedure. Chris

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@pita444help

That would unfortunately be me.
I've had this problem for over 25 years. My pain is in the left tailbone and anus area. (How lovely).
Only relief has been Clozepam .5mg x2 per day along with Effexor which is an anti depressant. Her to help or talk. I'm back in this dreaded horse because of the opiod crisis and the doctor wanted me to get off Clozepam which I have been fir two weeks. I'm now just like it was day 1 with pain. I'm going back to Doctor to get back on them.

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I'm also a long time sufferer with pudental pain in my anus, and it's been there for 38 years. I've been on hydrocodone for more than 10 years…4 pills a day…and will ask my doctor about trying your Clozepam. Just got a Tenns unit and will also try it, although most Connect members have had little luck with them.

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@rstollery

I'm also a long time sufferer with pudental pain in my anus, and it's been there for 38 years. I've been on hydrocodone for more than 10 years…4 pills a day…and will ask my doctor about trying your Clozepam. Just got a Tenns unit and will also try it, although most Connect members have had little luck with them.

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Have you tried lidocaine ointment 10%? It really helps me…. I know the nerve endings aren't prominent but I don't feel a thing when I apply it… It last for quite a few hours for me… I don't go anywhere without it! Could be worth I try? My doctor sends my RX to have it compounded so insurance doesn't cover it…. Usually about $30

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@nickyfriskel

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 ❣️

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Please let us know how this goes. Could you elaborate on dr Hibnner? I’m going to a pelvic pain center in my city. But judging from the GI department at the same place I’m not supe confident

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@dmburns54

Hello,
I crushed the left branch of the Pudendal N. in 1995. It took 3 years for a diagnosis and until July of 2001 before I had Pudendal release surgery that finally gave me some relief. Dr Stanley Antolak, while he was on the Urology staff at the Mayo Clinic at that time was the surgeon. His office is in St. Paul, Minnesota, phone number is 763-229-2266. You will find a compassionate and one of the most knowledgeable physicians in the world about Pudendal Nerve injuries. There are many different treatments used now. Please feel free to contact me here or by private message to discuss the complexities of this terrible problem.
Darrell Burns

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How were you diagnosed? I developed pudendal nerve pain after a-severe colon infection or so we think. I had many digestive issues prior. Then after multiple on on and off again treatment for small intestinal bacterial overgrowth. I developed cdiff colitis After treatment for that with antibiotic I developed left side burning, tingling in left side of private parts and upper left leg. Going to a pelvic pain center but really need a diagnosis. Could you elaborate on your experience with this doctor?

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