Pudendal Neuralgia..getting block,,, ... - Pelvic Pain Suppo...

Pelvic Pain Support Network
12,961 members3,999 posts

Pudendal Neuralgia..getting block,,, please respond Thanks

pianoguy
pianoguy
68 Replies

Has anyone ever had a pudendal nerve block and it helped them with the rectal pain and sitting down.... On Lyrica, xanaflex and small does of percoset 10mg.... I have to take this cocktail 3x a day to get through day,,,sick of,,,,,,plus that with the lexapro renders you totally unable to even feel a sexual orgasm,,,, talk about a disease that adds to your depression,,,, have no idea what to do,,,, help! Than all and I sympathize with all of you,,,,,10 years 13 surgeries and still can't sit in a chair without unbearable pain,,,,,,also had my coccyx removed in 2013,,,, that's enough

68 Replies
oldestnewest
Konagirl60

Hi. I am so sorry for what you have been through. You are a strong person.

I have had ‘fluoroscopy guided’ pudendal nerve blocks into the nerve root in my buttock. The doctor MUST USE anaesthetic AND steroid. My doctor used 80 mg.steroid. I sat for 24 hours. That block was a diagnostic tool to prove that the rectal branch of the nerve was injured.

It wore off because the rear branch of my right pudendal nerve was truly entrapped. Surgery proved just how bad. That nerve section had stuck to ligaments and fascia in my ischial spine.

I HAD TO have decompression surgery or I was going to die. I’d been left over medicated and sedated for 3.5 years and finally through hiring a registered nurse consultant, I got the surgery in Minnesota. Good luck. The blocks don’t hurt if they are done correctly.

1 like
Reply
Godsgurl
Godsgurl
in reply to Konagirl60

Konagirl60, did your surgery help your rectal pain? I was diagnosed with PN from Dr. Hibner in Phoenix and was doing better for about a year and a half. Not pain free but managing it and down to taking Dilaudid once a month. This last week have been hit with the most horrible rectal pain and pressure ever plus it is radiating into my left buttock with stinging achy pain. I cannot face the 24/7 pain I endured for several years again. I was disabled in bed, not able to function. This scares me.

Reply
Konagirl60
Konagirl60
in reply to Godsgurl

Please don’t panic. Stress exacerbates nerve injuries. I know how much this hurts. A product called Pascoflaire ( Passion flower ) will help calm your nervous system and alleviate anxiety.

Can you be seen by.neurologist to have a pin prick analysis ? Have you seen any neurosurgeons yet? What do they say?

Did you cycle or do some activities that required a lot of stooping, lifting and bending over your groin?

Reply
Susiebic
Susiebic
in reply to Konagirl60

Kona girl I am confused. Indie not see where she had surgery.

Reply
Konagirl60
Konagirl60
in reply to Susiebic

It sounds like she may have had in in Arizona but which nerve part was released?

Reply
Susiebic
Susiebic
in reply to Godsgurl

Did Dr. Hibner recommend surgery?

Reply
Godsgurl
Godsgurl
in reply to Susiebic

Susiebic I am still suffering with this attack 6 months later. Unbelievable depression and anxiety. Debilitation. You have no idea how many doctors I've seen. I paid $2500 to have a MRN which did say the PN was entrapped at the ischial spine but Dr. Hibner doesn't put a lot of faith in imaging. Sacral Caudal which was a disaster. Just had a S2 transforaminal diagnostic block near the largest cyst. Its coming to down to either surgery on Tarlov cysts or is it a distal pudendal problem. I went to see Dr. Hibner at the beginning of the month. He wants me to have a bilateral PN block, Botox on pelvic muscles and some kind of coccyx injection. all at once. I will give it a try at the end on this month so have to go back. But I easily could end up in the senior pysch ward or the hospital as I am fading fast. I will talk to the neurosurgeon tomorrow about the results of my diagnostic block. Terrified to have Tarlov cyst surgery. I need prayer badly. Thank you

Reply
Susiebic
Susiebic
in reply to Godsgurl

Is Hibner able to help? Your case is very different. I had entrapment surgery and got 70% relief. I have done everything I can to rid myself of the 30% left.

I will pray for you

1 like
Reply
Godsgurl
Godsgurl
in reply to Susiebic

I don't know yet. I go back on the 30th to have all these procedures done. I only hope I can endure the trip.I'm not doing well at all. Did you try having a spinal stim to remove the remaining symptoms? I hear the Stimwave is great for pudendal nerve issues. I would like to try it too but not sure where my problem is coming from. Spine or nerve itself.

Reply
Susiebic
Susiebic
in reply to Godsgurl

Unfound a great chiropractor that understands the problem. He is very gentle and uses foundation alignment of spine. I also use suppositories vaginally. It is very difficult to explain to people why supps work.

Way back when women were in labor they used to use pudendal nerve blocks. A very long needle used to inject marcain into the vaginal wall. So, from mid thigh and all through the pelvis and perineum you were numb. They don't do it anymore.

I use CBD supps at night or during flare ups. Every night.

Dr. Castellanos did a vag block on me, but the effects were nominal. If the nerve is trapped it needs to be untrapped. Just sometimes it is not that simple because there are many pathways of nerves in the area.

Don't give up.

1 like
Reply
anne77
anne77
in reply to Susiebic

Are the CBD suppositories through prescription only, or where can they be purchased?

Reply
Susiebic
Susiebic
in reply to anne77

Dr's do not prescribe them. You can get them on line.

Reply
anne77
anne77
in reply to Susiebic

Thank you so much:)

Reply
anne77
anne77
in reply to anne77

I've been looking online and there are sooo many to choose from!! Can you possibly private message me the brand?

Reply
Susiebic
Susiebic
in reply to anne77

I make my own. I have my medical card. You should just try a few. If you have a medical marijuana card or if you can buy it legally it works best with small amount of THC.

Do you have a card?

Reply
anne77
anne77
in reply to Susiebic

Thank you! I do have a card and will look into that:)

Reply
Konagirl60
Konagirl60
in reply to Susiebic

Same here. I had decompression surgery and it helped. No more burning pain.

Reply
Konagirl60
Konagirl60
in reply to Godsgurl

Was the pudendal motor latency test abnormal on both sides? Do you feel pain in both buttocks? I knew mine was only in my right side.

I thought Botox damages muscles? My surgeon, Dr. Antolak said it wasn’t safe.

If a section or sections of your pudendal nerve are entrapped you do need decompression surgery. It was the only thing that stopped my intractable burning pain. I’d start with that first. It took a long time for me to heal.

Reply
Godsgurl
Godsgurl
in reply to Konagirl60

I didn't do motor latency test. I have horrible rectal pressure and pain way up near the sacrum. I have no doubt my rectal nerve is compressed but its where the source is the issue. It also spreads to perianal area and pelvic. I guess I have to trust Dr. Hibner's direction on this and try the Botox. I also have very bad vertigo condition that is making this way worse. I feel like I will flip out with all this duress,

Reply
Godsgurl
Godsgurl
in reply to Konagirl60

Primarily left side

Reply
Konagirl60
Konagirl60
in reply to Godsgurl

Are you becoming incontinent with stool? I started losing whole bowel movements within 6 months after my nerve compression was established. Bowel incontinence is caused by damage to S2 S3 S4 sacral nerves.....pudendal specifically due to S4.

Reply
Godsgurl
Godsgurl
in reply to Konagirl60

Interesting you say this as I had two episodes associated with diarrhea in the hospital with uncontrollable poop/ they gave me immodium. were your episodes periodic or constant.

Reply
Konagirl60
Konagirl60
in reply to Godsgurl

Constant.

Reply
Godsgurl
Godsgurl
in reply to Susiebic

No, Hibner had me do the PN blocks and Botox. The blocks helped for a couple weeks then back to regular strength pain. Not sure the Botox did much but my therapist says she can feel the left obturator is more relaxed but it does not seem to affect my pain. I haven't been able to go back for follow-up visit. It is 6 hour drive. Im trying pelvic PT with a very good therapist but I have to travel to see her at Pelvic Sanity. Not sure the next step. Don't want cyst surgery. If I could get to Michigan I would try the pudendal Stimwave with Dr. Peters. I am waiting for approval. Probably will do a phone consult with Dr. Hashemi in DC too.

Reply
Ala2189

I'm so sorry for you

1 like
Reply
Lambloved

Pianoguy. I went to a group I am in on Facebook called Pudendal Neuralgia Hope and this is from Devan Swift on ther and about the Stim Wave. No amount of nerve blocks have helped me either ~~~FROM DEVAN SWIFT

I want to say thanks for all of the thoughts and prayers. I had a trial nerve stimulater implant surgery with new technology and new methods yesterday from StimWave. It was the answer to everyone's prayers. I walked around the block today, without stopping and didn't yelp with nerve pain once. Anyone who has been around me knows this seemed impossible to achieve. I will continue this trial until Wednesday then they remove the leads and I will be scheduled for four permanent implants. Thanks again. I'm blessed to have my family, doctor and PN friends! This stimulater is still evolving as the FDA approves levels and controllers. Anyone who suffers for PN or IC this is the path to nornal. I even drank a cup of coffee to see what happened, Nothing happened, no pain, no lighting bolt nerve pain. It's just like someone turned off my PN and IC switch. There is hope, and everyone will find relief, so don't give up.

EVERYONE NEEDS TO READ THIS!

Reply
pianoguy
pianoguy
in reply to Lambloved

I had the stimulator implanted..... Did not work that's why I had to opt for the unthinkable a coccygectomy..... which did like the coccyx pain but did nothing for this constant reactal pain that I think is an injury top the inferior rectal nerve. Don't know what can be done for that.

Reply
Konagirl60
Konagirl60
in reply to pianoguy

I think you need it decompressed.

Reply
Lambloved

If you are taking Lyrica and you have Facebook go to Lyrica Survivors International..I hate to say this but it's not a good drug.

God bless you Caren/Lambloved

1 like
Reply
seeMealive2

I keep expressing to others than tell me they are taking it--ITS POISON...should be taken off the market.

1 like
Reply
Jev1972
Jev1972
in reply to seeMealive2

Are you a doctor???

Reply
Lambloved
Lambloved
in reply to Jev1972

Also see "SeeMealive2 comment below. Love and God bless you Caren/Lambloved

Reply
Susiebic
Susiebic
in reply to Jev1972

I am a nurse. I worked 10 years with a population that used this drug. It is a seizure med. It causes Parkinson like symptoms to only name one thing. Read up on it and stop it. Use other therapies. Get surgery if appropriate. Every med they give for PNE has risks, personally I am not willing to take.

I did have surgery and got 60 to 70% relief.

1 like
Reply
Konagirl60
Konagirl60
in reply to Susiebic

Thanks for telling the truth.

Reply
Jev1972
Jev1972
in reply to Lambloved

I don’t think you should make such a “shotgun” statement. What does not work for one person may work for others. I work with 2 people that have received amazing results from Lyrica. I myself use it. When drugs work people move on with their lives only those with bad experiences usually leave negative reviews.

Reply
Lambloved
Lambloved
in reply to Jev1972

There are a whole group of people who have had problems with Lyrica. It's is a bad drug if you go the Facebook page called Lyrica Survivors International and read about it. And no I am not a Doctor. I have just seen how many (a lot) that know the reasons why it's not a good drug. One thing I have seen on T.V. and I can't remember the name of the drug, but a side effect is it can cause a certain type of cancer. My question. WHY WOULD YOU WANT TO TAKE A DRUG WITH THAT POSSIBILITY SIDE EFFECT? Not yelling I do that when I am intense about something. You check out the Facebook page and then you have to decide. Personally it gave me problems which is how I found that Facebook page. I do make suggestions to people because I care and love all people. God bless you Caren/ lambloved

2 likes
Reply
seeMealive2

I've had the pudendal nerve blocks, yes they are helpful if done right. I'm ready for surgery with a doctor that has discovered a les invasive way to fix this (these--as they run on both sides) by resecting the nerves and implanting the ends into the obturator muscle to prevent reoccurrence. I'm excited and will repost after surgery since I've (NOT) lived in misery for 9 years of so many misdiagnosis and therapies. The drugs are horrible--and he gave me the award of the day for longest list! For me....the Lyrica was the WORST! I still have lost memories from taking it, and always walked around like a dunk! I was being overdosed--so please read your insert! Maximum dose of 450mgs a day???>I was taking 600. Also check web md for those interactions. Best of luck.

1 like
Reply
Lottie-Jensen

Can I ask where are you having the surgery carried out?

Reply
seeMealive2

Surgery will be performed by Dr. A. Lee Dellon, in Towson, Maryland. The Dellon Institutes for Peripheral Nerve Surgery. He also has office in Henderson, Nevada.

Reply
pianoguy

Dellon institute is we all wish we could be treated...your in great hands....my Medicaid doesn't cover Dellon....uhhhggg 10 years 24/7pain, some so unbearable I'd panic which just made it even worse...dr's are clueless about pelvic pain ...the rectal pain is constant. Cant sit down 10 years or lie on either side!!! Sleep is almost impossible without muscles relaxers and ambien....enough enough please GOD please help me....if u had a pudendal nerve block please let know is it helped...out off options ...thanks all.......aldo

Reply
Lambloved
Lambloved
in reply to pianoguy

Sorry to say for me nerve blocks didn't help me for more than a few days. Father God I ask that you heal my precious sister in Christ ABBA( Daddy) FATHER according to your promise in 1 Peter 2:24 that by Jesus name Amen and thank you FATHER for answering my prayer. Love you in Christ Caren/Lambloved

Reply
Konagirl60

My nerve blocks were the same....they are a diagnostic test actually that only sometimes calm the nerve. If it’s stuck to fascia, ligament or viscera....you need decompression surgery.

Reply
seeMealive2

I one actual "pudendal' block--it did help for 6 months! Dr. Trent Emerick in Pittsburgh..Mercy Hospital Pain Management...his 'helpers have done it to me,> NO!

Reply
seeMealive2

9 years of every type of doctor, every medication, and therapies......and he says I'M PERFECT FOR THIS! ….is WHY>I need to LIVE, not exist.

Reply
Lottie-Jensen

Wishing you every success!!

1 like
Reply
Lottie-Jensen

Maybe once you gain strength post op you'll update as to your progress.

1 like
Reply
Godsgurl

Who is your doctor who did this surgical procedure? how are you doing now?

Reply
Sallysun8174

Can I ask , with your case, is PN entrapment or damage? Thanks

Reply
seeMealive2

had all my injections done in Pittsburgh-UPMC..Mercy Hospital: Dr. Trent Emerick

1 like
Reply
seeMealive2

I had to fight my insurance to cover him...still have to give $4,000 up front, he wanted $18,500. It took a week of conference calls to get approval. He is teaching his technique, but are other doctors who do something with the Aclock ?? glands, nerves..?? like the 'normal' way to fix the pudendal nerve. I wish I had better solution for you! I had given up.>9 years! My chiropractor has helped a lot too cause my lower back was always out of place for the 'guarding' the area of pain. *PRAYERS!*

1 like
Reply
anne77
anne77
in reply to seeMealive2

What insurance do you have? I was under the impression that Dr. Dellon doesn't take insurance period! I pay through the nose for individual BCBS PPO, and am hoping he has changed his policy! Good luck to you! It is no life living with chronic pain (I have both PN and IC).

Reply
seeMealive2
seeMealive2
in reply to anne77

He doesn't --pay up font and be reimbursed. Luiann helps you with the paperwork to have that happen. Mine is UMR..United Healthcare via government employee plan. They will cover so long as they agree to do it as 'outpatient'--which it is.; and as 'Usual and Customary'...….She has been a God sent angel in my case. They both 'just want to help people!'

1 like
Reply
anne77
anne77
in reply to seeMealive2

Thank you, and the best of luck to you! Hopefully one day we won't have to fight our insurance companies to get the help we need:)

Reply
seeMealive2
seeMealive2
in reply to anne77

I told them--its saving them money!> for 9 years, 33 doctors, tons of meds, therapies -ect=they've paid for it all! with no questions!--kinda sad..often wished they would 'red flagged' me to try to help.

1 like
Reply
anne77
anne77
in reply to seeMealive2

Sooo true! When is your surgery? Please keep us all posted!!

Reply
seeMealive2
seeMealive2
in reply to anne77

surgery: Wednesday December 5th 8:30 am EST. prayers!

1 like
Reply
Lottie-Jensen

Very best of luck. X

Reply
anne77
anne77
in reply to seeMealive2

Best wishes for a great outcome!

Reply
pianoguy

Gods speed to all on this thread...no one knows the pain and hopelessness....

2 likes
Reply
seeMealive2

I take as many meds for depression and anxiety for this condition as I do pain medications!

1 like
Reply
Michaelrc

I have had 2 pudendal nerve blocks no relief, been taking gabapentin for 5 months no help , also been on tramadol for 1 and a half years takes the edge off enough I can tolerate getting through the day , II can't sit any longer than minutes before i am in pain , so i understand what you are going through , just hang in there i am still praying for a day i can just feel somewhat normal again.

Reply
Konagirl60

You may have true entrapment?

Have you had a tubal ligation with Filshie clips OR a colonoscopy?

Reply
Painfulbutt

Are you taking enough gabapentin? You can take up to 3,600 mg a day. I needed 900 mg 3 times a day before I got relief.

Reply
Konagirl60

2700 mg! I’d be asleep.

Reply
pianoguy

Everyone is different ...LYRICA has saved my life!.......I was near suicide before and after coccygectomy...at least it gives me a few hours of relief to a 6 pain for a while...Have been on it for 9 years....no Parkinson's symptoms...no adverse affects at all......every drug can affect some people adversely...... until I find a miracle this is all I have to survive.

Reply
Susiebic

No body who has had this problem would be judgmental about how you get relief. There will be a time that medications do not work and you can not take any higher dose.

Are you searching out other modes of relief?

Reply

You may also like...