Hi everyone!  I've tried all the nerve blocks available and they were of no benefit to me.  One of the treatments I've been receiving from my Pelvic Floor Therapist are external and internal deep tissue massages, both pelvic and anal.  She has found several trigger points, mainly near the Alcock Canal.  Because the nerve blocks were ineffective, my therapist now believes that my pain could be muscle related, even though the pudendal nerve is most likely affected.  The doctor who diagnosed me with Pudendal Neuralgia is now recommending Botox injections, along with a Gastroenterologist/Internist that I recently saw for a second opinion.  Has anyone tried Botox, and what was the outcome?

26 Replies

  • Macoplin, the doctor I went to said he sees a 70% success rate with  the botox. And I saw a success story in another site a long time ago. I have what sounds like the same issue as you. Every one of my pelvic muscles is tight and had lots of trigger points and my connective tissue is very messed up. It's all impinging on my nerves and causes bad burning and sharp pain. There are other nerves besides the pudendal nerve down there, btw, so it may be a neighbor of the pudendal nerve (PFC nerve?). I have been considering botox and would have tried it by now, but I have a hard time finding doctors that I trust, plus it's tricky getting insurance to pay for it. And then you may have to repeat the procedure every 3 months, so I have been procrastinating. But If really like to do it. If you find a good doctor who does it will you let me know?

  • Yes, my doctor has a patient who has Botox injections every 3 mos.  I have AARP Medicare Complete through United Health Care, which covers the procedure.  My coinsurance payment is $340.

  • is the pain on one side or another? left or right or both?  did you try a pudendal nerve block of one side or the other?....  I would say botox is a treatment.. i had it.. but didnt stop my muscle right... had it done 2 or 3 times... since it was not in the right place it didnt matter,, aggravated other stuff till recovered... If the problem is muscles that are making things too tight for the pudendal or other nerve then technically a shot could fight the problem.... Takes a aim at exactly the right place by a doctor that is can hit the bulls-eye like a wild west gun slinger....  i only had one shot out of dozens into the pelvis that just happened to hit the right spot.. that was a lidocaine shot so i was only cured for 6 hours... but i was cured... a big enough botox shot would do the same thing... but only for 3 months... then u need another bulls-eye... every other shot i had missed though... Now in me my L4 dorsal nerve root controls the muscle that is responsible for the problem.. but now doctors dont even know what pelvic muscles the L4 exactly controls... they think it only supplys part of the leg and the big toe... and that is all they think it does... it is a cruel joke for me.... as for u... we need some more info about your injections.. what test have you had done... which injections didnt work?////  I am the only person here that has found the one nerve root that controls my PNE... so am a very alone person when it comes to getting that exact right shot... I know how impossible it can be,,, I got ever nerve on the lower half of the spine blocked part by part- section by section... vertebra by vertebra... till i found the nerve that controled my Pudendal Nerve Entrapment...Maybe the only patient that had every damn nerve checked lol.. so i know a crazy process. lol.... this condition is insane... to impose logic on what seems very chaotic is one tricky bitch of a problem haha.... let us know more... takes alot to narrow down this thing... My prob is totally muscle... so I hear that angle... other people have damaged or inflamed or a hundred things wrong with the nerve themselves... done by many things... But as ur doc said it could be the muscle.. or part muscle... 

    It is alot of things ... sorry for your infuriating perplexing situation... That is all i know i can tell you that.... It is Wrong to be here... we all know that,,,

    Jei C

  • I hear you, and I feel your pain.  I told my doctor that my biggest concern is that she gets the right spot.  It's crucial!  I suggested that she havs a discussion with my Pelvic Floor Therapist about the areas of pain she has located and she agreed it would be helpful to go over my visit notes to gather info. and to do an exam before the procedure to zero in on the right spots.  She has advised me that she will be administering lots of injections, and with this being her specialty, I may have some luck, but I'm not banking on it.  I'm not setting my expectations too high because I know that from all I've heard and read, our problem is so complicated and hard to treat.  The pain management doctor who did my nerve blocks came highly recommended an expert/specialist in treating Pudendal Neuralgia.  All my blocks were epidurals, and the last one came after he did a diagnostic test with 4 different numbing medications.  I didn't have any reaction to the first 3, but the 4th one numbed me from the waist down to my feet.  He said it was "visceral" and did a Superior Hypergastric block.  It didn't give me any relief, and I was referred to a Psysio who didn't have anything to offer me except a relaxation technique of rubbing my fingertips together in a circular motion.  Pretty sad!  Sooooo, I'm going out on a limb to try the Botox.  Not at all excited about it, but I feel stuck in a rut.

  • wow.. ok hadnt had the viceral before... when the pudendal is blocked on one or the other... that half of the groin goes numb... so if it was not the pudendal and blocked everything else i could see how the pain was left

  • if it is the pudendal... then anything that doesnt block it wont do any flipin good... it takes the machine gun method so often unfortunately,,, many report being hurt by many that hit the wrong area... since most anything can make the pelvic areas tense.. a wrong shot will make the area that does hurt u spasm up... so many say that one shot or another hurt

  • here is a song for ya....

  • It's interesting what you said about the L4, as I have a bulging disk at the L4-L5, L5-S1. All of my symptoms of pudendal neuralgia came up when I hurt my lower back, back in December of 2014. Coincidence? I've had transforaminal epidural injections at the L5-S1. It didn't make a difference for the pudendal nerve pain. Wondering if I should try an injection at the L4-L5. Geez, talk about grabbing at straws. 

  • it is straws... I tried Every single straw.... I know that a problem at the lower back can physically cause the pelvic entrapment... was a 20 year making the weight grow wrong in the right side that made the muscles grow wrong... Now i also know for sure that in me the L4 dorsal controls the muscles in the pelvis that cause my entrapment.... i think it is the piriformis for me... Had every spine nerve tested from the bottom half done...

  • not coincidence i would bet my man..or woman.. is impossible to tell on this forum with the smily faces... glad i found how to put my pic up... no reason to hide what this has done to me anymore... it is a shame causing disease... is just the fact oh what it does... nothing to be ashamed of though... It is a nerve thing... not like other causes that people would feel they got some damn reason to be ashamed...

  • Hi Macoplin, I too have a similar problem after a fall on my buttock several years ago. My pudendal nerve is irritated but not sure what is causing the problem. I have seen several osteopaths, and physios and one physio said its the piriformis muscle and I need a Botox injection. I have tried all sorts of different excercises all seem to make the problem worse. Which physio are you seeing, and what part of the country do you live? I am now waiting for an appointment with the NHS pain clinic, but that will take months. Hope someone can help, apart from this awful nerve pain, I can't sit with us life changing. Let me know if you find someone who will do Botox injections. Good luck.

  • it is so horrible how one bad fall can do this... I always hated before all this all the stupid comedy home video show that shows people falling on their ass and cue the whole pathetic immature audience laughing and someone falling... if only those people know that on in a 1000 or 10000 or 100000 of those means crippling pain for life they would not laugh...

  • I've  had botex  2 times. Didn't  work. It was injected into the muscle  and trigger points. 200cc was used. But I would try it. Everyone is different. Are you on any meds now ?

  • Hi. I have had several Botox injections. They helped me more in the beginning but near the end they were getting shorter in their effectiveness. The side effect of Botox is paralyzing the muscle and it is supposed to relax the nerve. My piriformis muscle atrophied overtime with the botox and I am trying to come back from that. I have been diagnosed with pudendal neuralgia. I had several tries at nerve blocks. The one that worked was the one that used both CT and fluoroscopy.

  • hey desperate... my problem is at the piriformis level... please tell me what the effects of your atrophied piriformis??? what was the problem when it atrophied... when m piriformis is stopped i am 100% cured.... let me know.... we are sufferers of similar reasons...

  • Yes that's what I experienced. It only lasted me a month. But some people get 9 months relief, Etc. If the botox give you 100% relief then I would continue. But be aware other muscles are going to pick up for that muscle so your hamstring might start to hurt some and also your lower back. So even though you feel better you're not back to normal. Physical therapy will help in allowing these muscles to get stronger without going overboard and causing them to spasm. Also I believe that once you get your muscles and core muscles strengthened you will be able to cut back on the botox and and then start bringing the piriformis strength back. The piriformis spasm is caused by too much tension on that muscle for whatever reason whether it be nerve damage or strain. I hope this makes sense.

  • oh yea it does make sense... Never had botox itself work... maybe i need more than 3 tries into the piri area to get it to... the lidocaine from one of the botox injections worked... hard to hit the bullseye in me.... to stop the pelvic muscle i had to get the Lumbar root that controls that muscle numbed to release that trapment/// I am ganna go beg in florida and georgia for nerve destruction... and getting the special treatment in atlanta...  could very well have the atrophy side effects you have had if i could get the piriformis stopped...  I would take any side effects and deal with them over nerve pain that takes away all of life... It is very good to meet someone that has a mirror understanding to my situation... We are in a club we didnt want to join... What matters is someone else that can understand the world like we do...

  • My Urogynecologist said Botox would be an option for me as well. I have to make an appointment with him to discuss my options. I have a sneaking suspicion that insurance is going to be a pain about this. 😒 Tired of throwing money at this. I don't want it to be a temporary fix. The Urogynecologist said I have Levator ani muscle spasms as well as a tight obturator internus muscle. I'm wondering if I should wait for the 3-tesla MRI of the pudendal nerve. At this point I would take a trip to the moon, if that meant I would be cured of this. I'm supposed to hear back this week about the possibility of having this 3-tesla MRI done. For now it's nerve medication and Percocet. There is no one in my area or state that even deals with this nerve. It looks like a trip to Baltimore is in the future for me. I still have to have a pudendal nerve block. I have to find out where I have to go to get one of these done. More work to do on my part. The saga continues...

  • Hi, I am a newc0mer t0 this site.   I was w0ndering d0es a 3-telsa MRI sh0w the exact p0siti0n 0f the entrapped nerve. I have been suffering f0r 5 years n0w with pudendal nerve pain. I have had nerve bl0cks and ct guided injecti0ns a dempressi0n surgery at the alc0cks canal and all has failed. What type 0f c0nsultant w0uld understand the results 0f this type 0f  3-telsa MRI.

    I h0pe y0u find the right the answers f0r y0ur treatment. best wishes D4

  • Supposedly the 3-Tesla MRI shows the nerves very well. I have yet to recieve one yet, so I can't comment on whether or not it shows the entrapment. From what I have read online, it there is a much better chance of showing a problem with the nerve with this type of MRI. The only MRI I have had of the pelvis was only a 1 & 1/2, and my Dr. admitted to me that the sacral nerves got lost in the images because they were so tiny. The 3-Tesla uses stronger magnets, thus showing more detail. I'm currently waiting for a call to schedule one. I'm really anxious. I would ask your doctor to find out where the nearest one is. Or you could call your nearest University hospital and ask if they have one. Ask to speak to the radiology department to see if they have one. I'll update if and when I get one done. Best wishes to you too!

  • I've asked my neurologist about this MRI and he did not think it would show a clearer image than the MRI  I had of my pelvis so that's as far as I got with that.

  • I saw dr. Hibner in Arizona. He has specific Tech that does his MRIs for him. This guy says it to a certain scale looking for entrapment. He and dr. Hibner worked on fine-tuning the MRI machine to be able to visualize the nerve. This is the only Tech he allows  to do this test. Dr. Hibner is number one in the US for pudendal nerve entrapment surgery. You can view him doing surgery on YouTube. He's very nice. He also has an excellent PT Loretta who is good at diagnosing also. I have seen him 3 times so far. I have to travel a long ways to see him. As far as the pudendal nerve goes with entrapment I believe he's the best bet. I believe he was trained in Nantes France.

  • Before you get the nerve block ask if they use fluoroscopy or CT or both. They do use strong steroids for this. I had a doctor who just used fluoroscopy and he didn't do it very often because he was a pain management specialist and this type of pain was not his average patient. He tried it three times and they were all unsuccessful. I went to another nerve block specialist. He was experienced in this particular procedure. He used both fluoroscopy and CT. And he got it on the first try and I experienced 100% relief. Even though doctors wanted three positive tests he could only do 2 because of the amount of steroids used. And he was very cautious about this. Asking questions can not hurt.

  • Thank you for the tip!!! I'm getting ready to be scheduled for a pudendal nerve injection. Is that the same thing as a block? Thank you so much!

  • Yes it is. Happy I could help in a small way.

  • Wow! I'm so sorry! 🙁 I'm curious what this one will show. I'll keep you posted. 

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