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Pudendal Nerve Treatment

ncoplin profile image
57 Replies

Yesterday I received 2 injections via the top of the buttock into the pudendal nerve (or next to). It is a relatively new way of treating the nerve. In the past it has been done through the vagina. Dr says all the treatments have a 50% chance of helping. Next step would be 2 more injections if this one is helpful. Next would be Ganglion impar block (which I had once) and if that fails, a spinal stimulator. Has anyone had these procedures? I am in the US. My pain has been getting worse since my hysterectomy 3 yrs ago. Thanks for any encouraging news!

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ncoplin
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PPSN_JudyB profile image
PPSN_JudyBPelvic Pain Support Netwo

Hi Nancy,

These injections via the buttock aren't new. Were they CT guided ? this is the way they are carried out in France. Gynaecologists ( and some pain specialists ) did them via the vagina in the past but this isn't recommended for safety or efficacy reasons.

No more than 2 nerve blocks are recommended. The diagnostic block is the most important. There is no evidence to suggest that ganglion impar blocks are effective. This was presented at a congress in Nimes in April this year. There is interest in Botox though. Have you explored this ?? Spinal cord stimulators help in some cases but it's pretty invasive. There have been problems with movement of the leads in the past meaning repeat procedures. Work has been going on to try to improve this but I'm not sure how much progress has been made.

Hope the nerve blocks help.

r5cervelo12 profile image
r5cervelo12 in reply to PPSN_JudyB

Hi, Nancy im 39yr old male with Pn at least my neurologist, here in Ohio.

Has told me I have. I do have all the symptoms and others here have.

I was in a bad bicycle crash 10 yrs ago. Im now trying to find a true professional?? and help?

ncoplin profile image
ncoplin in reply to r5cervelo12

Sorry, I still have symptoms. I am on Suboxone 2 mg twice a day and Butrans patch. I have been injected, poked inside and out, physical therapy, lots and lots of medications, meditations and yoga. I still have pelvic pain but it isn't as bad as before. I was on Fentanyl and I developed "opioid induced hyperalgesia" The meds were making my pain worse. The meds I am on now keep my pain down so I don't scream. Mine started in '09. Wish I could help you. I think mine is here to stay. I am on disability from it. Good luck.

r5cervelo12 profile image
r5cervelo12 in reply to ncoplin

Im sorry to here that.. did you go to france for surgery??

Hawk2017 profile image
Hawk2017 in reply to ncoplin

What meds are you on now?

helenlegs11 profile image
helenlegs11Volunteer

Were they more into the sacral root area ncoplin? I would imagine a little lower than that as they would have to target S2,3 and 4 to be effective for the pudendal nerve at sacral root level. . . . . Possibly just over or under the piriformis muscle before the nerve divides?

I hope it is successful and helps you let us know the outcome.

The only 'issue' I would have with that approach is that it is not answering the question where the nerve may have a problemas it will be targetting the whole nerve.

I expect they are coming from a therapuetic pain relief standpoint for you (always nice ;) )

rather than where, 'anatomically/geographically' the problem may be.

let us know how you are.

Helen

ncoplin profile image
ncoplin in reply to helenlegs11

I have had a ganglion impar block which didn't help. This doctor is trying this first. He says all of the treatments are basically 50/50. He didn't paint a very rosy picture for me but it's all i've got right now.

All I can say is be sure you know you can handle the outcome good or bad. I've never considered treating the nerve directly on a 50% success rate, that means it fails the same amount. They are not good odds to me and I always look at the fact, how will my life be if I am the same or a little worse after this? Can I cope with the decision I made to do it?

ncoplin profile image
ncoplin

Story of my life. I have had several treatments including injections and none have worked yet. This is one I haven't had yet. None of the treatments have good odds.

Coping is the most difficult thing for me. My life would be tremendously better if it works even a little! If it doesn't work, I sink deeper into my depression. I am not dealing with this very well as it is. I was active, working full time and enjoying my live until April 2009 when I had my hysterectomy. I have a few more options with this doctor and after that I don't know where to go. I am in the US so I don't know if there are better options in Europe.

helenlegs11 profile image
helenlegs11Volunteer

Did you wake up from the hysterectomy with this pain?

Can pinpoint that as the starting point ?

There are many Dr's in America who can treat the problem. Take a look at

pudendalhope.info/node/58

There is quite a list on there

Who are you seeing currently?

I would also ask for some pain management. The strategies involved, like cognitive behavioural therapies, acceptance and mindfulness even hynotherapy are very helpful. While not a cure (we wish) they are definitely useful as coping strategies.

ncoplin profile image
ncoplin in reply to helenlegs11

Pain started exactly 2 weeks post op. Gradually got worse and worse. I have been the gammet. 4 pain management docs, psychotherapy, biofeedback, accupuncture. I need to find a good psychiatrist to manage my depression. That would help too.

Thanks for your input, I will check out the web site! :-)

mdonohue169 profile image
mdonohue169 in reply to ncoplin

Went to psychiatrist that would take my coverage saw her for 6 frustrating weeks while we worked on plan and progress report which she asked me to sign after 6 weeks in which my goal was "Why is _____(my name) depressed?" I wouldn't advise it unless you wish to get more frustrated. I call national pelvic pain organization and asked for group therapy group in New York City available to me. They have the most lovely glossy literature!!! I got very nice call which told me they had nothing in New York City area for this problem and suggested I start a group - even sent me a tape and instructions on how to do so. OH PLEASE!!! When I got package I just took a pill and went back to be with a good book. Good Luck.

Debra13 profile image
Debra13 in reply to mdonohue169

I live in the New York area and my therapist actually asked me to start a support group. Please if your interested get back to me. Thanks Deb. I guess she feels it would be better than being in bed all the time.

mdonohue169 profile image
mdonohue169 in reply to helenlegs11

Mine started after hysterectomy 18 years ago. Always had a bad back I have tried all of the stuff you recommend but I am furious when someone tells me acceptance of chronic crippling pain is helpful or any type of coping strategy. I always want to advise them to have the same pain and then advise all these wasted efforts that take years and cost hundreds of dollars.

PPSN_JudyB profile image
PPSN_JudyBPelvic Pain Support Netwo

ncoplin,

Not surprised the ganglion impar block didn't help. Where in the US are you based and who are you seeing ? the strategies Helen mentions may help alongside other things you are doing. There are other docs we know in other parts of the US who may be able to help too.

Good luck

ncoplin profile image
ncoplin

I am in South Florida now. Went to the Cleveland clinic here and finally got the diagnosis of PNE. Up until now, the docs wouldn't give me that diagnosis. It was very frustrating. The pain management doc (Dr Sheldon Regenbaum) is very familiar with the problem and is one of the few in S. Florida attempting to treat this condition. I know it's still trial and error. Everyone responds so different. It makes it hard to treat.

Thank you for your help.

rozamond profile image
rozamond in reply to ncoplin

I too live in south Florida did this dr help u Would u recommend that I should see him pain I've rectum is unbearable

ncoplin profile image
ncoplin in reply to rozamond

I live in Plantation and now I see Pain Management Dr Ira Fox. He is very nice and tries everything to help. I have a great sympathetic gyn. Dr Jay Trabin at Cleveland Clinic. He also referred me to Dr. Harvey Samowitz-Urologist. I still have pelvic pain, bladder pain and ibs but it is controlled a little better.

rozamond profile image
rozamond in reply to ncoplin

I live in boynton beach. Have pudendal neoropathy.due to removal of hemroids .have had pain mgmnt with dr. Berger in boca raton did not work. Live on oxicodone just takes the edge off and ice packs How did these Drs help u ?my internist has suggested. I see a new pain mgmt dr berman I have had injections nerve blocks. Special creams there are days I feel I can't go on like this.

ncoplin profile image
ncoplin in reply to rozamond

I see Dr Ira Fox in Tamarac for my pain meds. Dr Jay Trabin at Cleveland Clinic is the go to guy her for pelvic pain.

ncoplin profile image
ncoplin in reply to ncoplin

That oxicodone is nasty stuff. Is there any way you can get on something else?

Nicole124 profile image
Nicole124 in reply to ncoplin

I was referred to Dr. Fox by Dr. Amir Shariati, but shoes Dr. Oztoctay so I could have the Pudendal injections earlier he's a fine Doctor and after Gangaloin & Pudendal blocks I'm 45-50% better really helped!! still have some burn & pain so we'll see what happens I also take pain meds it helps! cause I have nerve issues in my neck also JOY JOY...ice packs really help

Nicole124 profile image
Nicole124 in reply to Nicole124

I forgot to mention this all happened from a surgery gone bad. (hysterectomy) nerves got severed . But he is a good doctor I know mistakes happen we are only human. I just can't afford or handle this anymore. That's all!!

ncoplin profile image
ncoplin in reply to Nicole124

Mine started with a hysterectomy also. Whenever they do that procedure, they must cut the uterus away from the bladder, intestines and the abdominal wall. Nerves are cut as part of the procedure. Unfortunately for us, they never stop sending the pain signals to our brains.

HHDH profile image
HHDH in reply to Nicole124

Hi- I am in S. florida and my husband is suffering terrible. Did your DR do the pudendal nerve block? did it work?

electricjaws profile image
electricjaws

don't mean to frighten you but i had a operation in my low back to put something called a interstim in my low back,it was meant to help my nerve problem i had with my bladder,it did not help ,the op took 4 hours not 2 as i was told,my pain levels were not controlled due to my bad reactions to a load of meds and it was EXTREMELY painful the whole time,you had to be awake so when they moved the wires around they hit the right nerve,this hurt so much i was in agony crying and i was told not to make a fuss!!! i was treated no better than a animal by the n.h.s in england ,it didn't work so two weeks later i would not let them remove it without being heavily sedated, they didn't seem to care i had fibromyalgia either, i found the whole experience a EXTREMELY PAINFUL experience, maybe if you have it done privately as you do in the U.S.A it will be a better experience than mine, GOOD LUCK IN ANY OF THE DECISIONS YOU MAKE!!!

ncoplin profile image
ncoplin

WOW I am soooo sorry you had such an awful experience. I too have an interstim implant for Bladder problems from my hysterectomy. Not only did they put me to sleep, they wound up keeping me overnite because they couldn't control my pain adequately. I can't imagine going through that without sedation! I want to have it removed because it doesn't work but I don't want to go under the knife again.

cookie1234 profile image
cookie1234

I have had a spinal cord stimulator in me for 13 months. I have had trouble finding the right program that works for myself. It has worked at time but not to the point that I am finally going to have surgery. You name it I have had it done. Lot of injection's, all different kinds of medicine put in. It would work for 2-3 days. That was it. I have traveled to Washington D.C. 2 times to have botox shots injection, Bad thing was they did not take insurance ,Very expensive. Plus it didn't work. I cannot wear pants, for that makes me really in pain. Of course this is impossible for it is winter, and I live in Steamboat Springs. I am 60 year's old, and have been trying everything that I learn about. Nothing has worked yet. I am going to Phoenix AZ on May 28th and May 29th for a consultation, and hopefully they will have the answer, and will have surgery ASAP. I have hit the bottom, This has made my life miserable. Thousands of dollar's we have spent on traveling , operation that don't work, it is a night mare. The Dr. I am seeing is Dr. Hibner WEB SITE-----st.joseph-phx.org 2. Medical Service 3. Center for women Health 4 Division of surgery pelvic pain 4. team look this up, and read it. There is a picture of Dr. Hibner in it. My Dr. saids he really knows what he is doing. and knows all about it. Has been doing it for many years.. Well I hope I have helped you. You can always e-mail me. If I can help some one, who has been trying years to get well, it would make me so happy to hear that. This is an awful thing we have, and I will not give up.

Sincerely, Barbara J

HHDH profile image
HHDH in reply to cookie1234

Hi- have you had any luck?

Richard1969 profile image
Richard1969

Hello all. I have been experiencing pain for almost 1-1/2 years now. Being a male, most Drs. go straight to the diagnosis of prostatitis. After sharing my story with multiple physicians I was able to have an ultra sound of my prostate. It showed nothing was wrong with my prostate.

From there I had a series of 3 injections done into the alcocks canal. This provided me with brief and minimal relief. Based on my specialists advice he suggested that I have an injection in the coccyx area and a dorsal injection (base of penis).

Being that I'm a big guy 6'2" we decided to do the coccyx first and the dorsal second. When in the procedure room the pain physician noted that my coccyx was in the shape of an "L" when it should be in the shape of a comma. He proceeded with the coccyx (impar ganglio) injection and we did not do the dorsal injection. It has been 5 days and my symptoms have significantly improved. This area is often over looked due to it being an uncommon place for the pudendal nerve to be entrapped or irritated.

If anyone else has had success similar to mine, I would be interested in hearing from them.

Antione324 profile image
Antione324 in reply to Richard1969

Hello, I've been dealing with this pain for years, sitting makes it worse psin felt lower pelvic and in the private area, I was thinking of suggesting same shots to my pain specialist or do you have any added advise?

stuchris profile image
stuchris in reply to Richard1969

Hi Richard This really sucks does'nt it. I have had 3 pudendal blocks with no results but I have now had 4 ganglion impar and coccyx blocks. The impar block has worked I had very good relief from 2 of the impar blocks. Dr doesnt know why exactly that sometimes it works and other times it does'nt. The local he uses always gives me immediate relief so he is on the right track. The pudendal doc did a rectal exam and could not find any sensativity in the other pudendal trouble spots and KI had rectum pain and sore tailbone area so seems like it is the impar. This has been a 2 year ordeal and I am addicted to tramadol but who cares lol I hope it works for you. If the next shot doesnt work I am going to have to look at other alternatives.

ttoney63 profile image
ttoney63 in reply to Richard1969

I was wondering if you have had any relief with the ganglion impar block? I have had symptoms since early 2009. I was diagnosed with a UTI in 2008. I think the infection irritated my dorsal nerve and that irritated my pudendal nerve. I have had rectal spasms since. My doctor had no idea what my issue was until I found information about pudendal nerve damage on the Internet. I don't have a pain doctor or even know where to go. Any info you could give me would be greatly appreciated.

ncoplin profile image
ncoplin in reply to ttoney63

Unfortunately, no. I had them about 6 years ago. I have a new pain management Dr now and he wants to do another one but my pain is managed pretty well now. I have flares but I manage with Suboxone for pain. Not the approved use, but in small amounts it controls the pain. Definitely give it a try. My new Dr. is really feels it can help. Good Luck.

jerseyguy profile image
jerseyguy

I wonder if I might have the same L shape tailbone problem. Haven't yetahad injections in the spot you did. It's been a month since you posted. I are you still feeling significantly better or is pain coming back?

stuchris profile image
stuchris in reply to jerseyguy

During one of the procedures the nurse comment on my tail bone shape and the dr said some people have different set ups and he didnt make anything of it

Richard1969 profile image
Richard1969

I'm still experiencing pain at the tip of my penis and hypersensativety on the glans. I started taking Valium 10mgs. Twice daily. I have noticed significant relaxation of my pelvic muscles. However still have on-off pain at tip of penis and glans.

My last injection was at the coccyx. Therefore it was not a true ganglion impar block. My understanding is that a ganglion impar block is done with a U shaped needle and applies the medicine at the s2,s3,& s4. Is this the type of block you are referring to?

stuchris profile image
stuchris in reply to Richard1969

not sure what he did he said he did the coccyx and the impar. The impar isnt even listed on the forms they submit to insurance companies and he said it wasnt covered

stuchris profile image
stuchris in reply to Richard1969

my pain is mostly rectal and when it is bad i feel it in my scrotum and urethra

Nicole124 profile image
Nicole124 in reply to stuchris

I have the same pain after Hysterectomy going through injections, gangalion shot helped 25-30 % soon to go for Pudendal injection

ncoplin profile image
ncoplin in reply to Nicole124

Hi Nicole. It has been 6 years since my Hysterectomy. I had the Ganglion Impar block and several other injections. Physical therapy, acupuncture, lots of different meds. I haven't written in a very long time. My pain now is different. The surgery caused me to have painful bladder spasms and rectal spasms. Pelvic floor pain and bladder pain are my biggest issues. Unfortunately, the narcotics cause urinary retention so I now have Interstitial cystitis and pain which may or may not be from the P nerve. If I had only passed on the hysterectomy I would not be where I am. I hope you get relief from the Pudendal injection. I never got relief from the Ganglion impar block so maybe the Pudendal injection will work for you. I will keep my fingers crossed for you. Good Luck!

Icybonz12 profile image
Icybonz12 in reply to ncoplin

Was your hysterectomy vaginal? Why did you have the hysterectomy. I also had one vaginally and now suffer from pelvic floor pain. No pain before surgery and came out with pelvic pain. Muscles tight and in constant spasm

ncoplin profile image
ncoplin in reply to Icybonz12

Yes it was. I had fibroids and I was bleeding so heavy and often I became anemic. I didn't have any pain for two solid weeks. Then it came and hasn't left since.

I too suffer from tight muscles and spasms.

rkgs profile image
rkgs in reply to ncoplin

I swear, reading your story is as if you are writing my own experience. Almost every detail. I just found this board tonight so I'm hoping to gain more insight regarding the Spinal Cord Stimulator. I seriously cannot believe how similar our stories are...

Richard1969 profile image
Richard1969

I don't have pain in my rectum. However, I do notice that my scrotum becomes very tight and uncomfortable. I associated that pain with tensing of muscles.

Richard1969 profile image
Richard1969

I had a MRI done last week. I have not had my follow up appointment to review the results.

stuchris profile image
stuchris in reply to Richard1969

There is a latency test they do to help diagnose prudendal they apply electric shock to your penis and measure how it travels. It is not that painful but it is very scarey and you jump like a frog. Dr Conway in southern New Hampshire does this test.

Richard1969 profile image
Richard1969

Three weeks ago I had a ganglion impar block as well as injections into my piriformis muscle. Pain was gone for 2-1/2 weeks. Pain is slowly creeping back. Therefore, until my next set of injections late September I'm continuing internal and external Physical Therapy and yoga. I'll do my best to keep everyone informed.

stuchris profile image
stuchris

My GI injections are 3-4 months apart. I had one shot that made it completely go away for a month or so. The others seem to make it slowly better. I have had them for over a year and am much better than when I started. The internal massage by Pt of my rectal adhesions made it a better but was very temporary.

Richard1969 profile image
Richard1969

Stuchris

Thank you for responding. My injections will be 8-10 weeks apart. I'll keep you informed.

mdonohue169 profile image
mdonohue169

I've had the spinal stimulator - buzzed all my other nerve pain into submission but did nothing for pelvic pain.

Nicole124 profile image
Nicole124

I had the Gangaloin nerve block where I reside in S. Florida by Dr. Oztactay. Relief about 25-30 % at least it's better, but hard time with my bowls, schedule next for Pudendal nerve injection hoping this will work can't take this crippling burning pain after a hysterectomy that I know he ceaved a nerve or something he states he the Urologist doctor made a mistake, that's why he sent me to have these injections done. pain was right after surgery then I had a 3rd one to remove all that make it worse cause it left a hole where ovary had to come out, but my ovary was in my loin! where it shouldn't be the Dr. said. he had to remove it and couldn't put anything there!! so I'll let u all know when I go for Pudendal shot. Considering other physical issues with pain I have I Thank God for my full time job with not much to do in the mean time that's what I need with time off occasionally that's great and when really sick or my son is I can do some work form home on laptop. Options I desperately need them.

NicholasFogelson profile image
NicholasFogelson

Pudendal blocks done by gynecologists are usually done transvaginally, while procedures done by pain management specialists are usually done transgluteally under fluoroscopy or ultrasound. Either method should work if it is done right, as the needle ends up in the same place via either route.

Nicholas Fogelson, MD

Gynecologic Surgery

Endometriosis and Pelvic Pain

Pearl Women's Center

Portland, OR

(503) 771-1883

mdonohue169 profile image
mdonohue169

Could you please update me on this treatment. Did it help? I had one shot and it worked for two days but getting into the city is hell for me with all my other problems and I'm afraid this will end up like the epidurals for my back forever going to these creatures (called doctors most of whom treat me as if I'm working for them not them working for me.)

ncoplin profile image
ncoplin

shots have never worked fo rme.

Adele1 profile image
Adele1

I just had Botox by a Dr ay UCLA who sdpecislixes in PN, but it was thru my vagina , for rectsl pain. Amunfortunately i dont think it worked. Also i experienced a lot of vaginal pain in my vagina 6 weeks later. The foctor said she checked me & i dont have aninfection & all my pelvic floor muscles atmre relaxed, so she doesnt know why i didnt get any pain relief. I told her ive never had vaginal pain, but she insisted i did, & became very defensive. Luckily the vsginal pain has gone away. She told me to go for cognitive psychological therapy.

She didnt want to give me any hope, & basically dismissed me, saying she doesnt have sny other ideas how to help me, because the Alcocks canal blocks i had have never given me any significant pain relief. She was very uncaring & clinical. I would rcprct s good Df tovbe compasionate & say, "dont be discoursged, Ill work w you & well find a solution. I was in excrutisting pain. I was disappointed & so discouraged by her attitudd. I went home & cried. Im wondering if anyone else has been treated like this by this Dr. Actually im certain they have, because she was mesn to me 2 years ago, & she was cold & bitchy. My husband was in the room, & he commented to me he couldnt brlievr how mesn soitited she was. Ive never been treated like that by a Dr before. Shes a prfesdor of gynacology at UCLA,

I hope "what comes around , goes around, but i doubt that happens in resl life. Im not going tovgive up. I do think i have the wrong disgnosis possibly, but im going continue to fight to find s doctor who can help me. My problem is i can no longer sit at all, This is a horrible isolating condition. However the other group im in on the internet is Pudendal Nuralgia Hope. Its a closed group. I've learned s lot of possible ideas from people in that group. Theyre all very supportive. You have to be strong & determined if youre going to have a chance of finding a solution.

AuntieH profile image
AuntieH in reply to Adele1

Where is your pain? I have pain too, but not sure if it's PN.

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