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keri

Chronic inguinal pain

Posted by @keri in Chronic Pain, Oct 17, 2011

I am 38 years old & have suffered an injury to my ilioinguinal/hypogastric nerves after a gynological surgery. My nerve pain is in my right groin & right pubic area, occasional travels down my inner thigh. I am on Gabitril (antineuroleptic), methadone, tramadol & Zoloft for pain control. I had a peripheral nerve stimulator implanted in my abdomen, but it needed to be removed a yr later due to a chronic infection @ my incision site. It relieved about 30% of my pain but could have helped more if it didn't get the infection. My life has completley changed. The pain has limited me on doing things I used to do.
I have an appt. next month in Rochester, Mayo w/ Dr Mathew Pingree, @ the pain clinic.
Has anyone suffered this type of pain? Has anyone had pulse RF or RF ablation done? I'm scared to have an ablation or a chemical ablation due to the risk of developing an neuritis that could make my pain worse.

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keri

Posted by @keri, Nov 16, 2011


Well, I had my visit w/ the pain doc regarding my neuritis. A high definition MRI was performed, Almost like a neurography scan, but the results where negative. I wanted it to show something so I can confirm my diagnosis & possibly treat or relieve some of my on-going pain. Dr. Pingee performed ultra-sounded guided pulse radio frequency to my injured nerves but this procedure did absoultely nothing to relieve my pain. I am so disappointed. What do I do next????

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tomb1

Posted by @tomb1, Feb 12, 2012

Hi Keri. Sorry to hear about your pain. I, too, have been searching for a solution for my chronci groin pain caused by nerve damage from prior surgery. Have had my pain 3 years. I am on pain meds. have tried PT, injections and denervation of my permatic chord. I am exploring Peripheral Nerve Stimulation. Doc told me RFA isn;t covered by insurance.

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keri

Posted by @keri, Feb 19, 2012

Tomb
My doc also warned me about RFA not being covered by insurance. Lucky mine was because it would have costed me around $2500. RFA did not change my pain at all!
I tried Peripheral nerve stim w/ 2 leads into my groin, & as I mentioned it did not help. possibly due to it being infected the entire year I had it in???? I am probably going to try a spinal cord stim in the next 2 months.
When you had your denervation done did it make any difference? Are you numb? Did it decrease or increase your pain? My docs in Bismarck & the one I saw n Mayo, Rochester MN, did not recommend denervation because of the possibility of it increasing my pain. To tell you the truth I have so much pain that most days I can't imaging it getting any worse! Pain meds don't help my pain & I am very sensitive to most meds that can help w/ neuritis.

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tomb1

Posted by @tomb1, Feb 19, 2012

My doc told me the same thing about RFA. Sorry it didn't help you. The denervation worked for about 10 months and th new pain I have now is not as intense opr in the same spot.. It was denervation of the spermatic chord. The last pain doc I saw said he wouldn't have recommended the denervation - but not sure why. Not sure if my new pain is from it or the orginal surgery. Google microsurgical denervation to learn more. A doc in Chicago did my surgery.

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keri

Posted by @keri, Mar 10, 2013

tomb, can you please share with me who was the Chicago doc that performed your denervation. How are you feeling now? Also have you ever been to a Peripheral Nerve Institute who specializes in peipheral nerves. When I google this lots come up & it's overwhelming!!

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tomb1

Posted by @tomb1, Mar 10, 2013

It was Laurence Levine. Since my last post I went through a 3 1/2 week pain rehabilitation program at Mayo. They are wonderful people. I am off my medicines and am managing my pain though tools like relaxation, distraction, and deep breathing. I highly recommend the program.

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aliciadayan8

Posted by @aliciadayan8, Aug 24, 2016

hi @tomb1 I suffer since 5 years ago a pudendal nerve chonic pain. I heard about this Mayo Clinic program to relieve pain and as I live in argentina is very expensive for me make treatments in the US or in Europe, but this program sound good if people recommend it. because is not invasive and for sure has no side effects. how much would yyou recomend it?

keri

Posted by @keri, Dec 18, 2011

I am going to try a spinal cord stimulator early next year, Jan. 2012. Keepin my fingesr crossed & praying that this will help me. I didn't have much luck with the peripheral nerve stimulator.

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majel

Posted by @majel, Jun 5, 2012

Please tell me more about stims. Did they help at all? I'm mostly going with the pain relaxation careful of which exercises I can do and not do. Weather also important

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keri

Posted by @keri, Jun 7, 2012

I've tried 2 types of stims. 1st was peripheral w/ 2 leads into my rt groin directly over my pain & the other stim trial was on my spinal cord. I actually had the peripheral stim permantley implanted for 1 yr. but I suffered from an incisional infecton the entire time, trying long course antibiotics w/ no luck, so had to have it removed.
When comparing the two the peripheral was extremely positional, but very specific to my site of pain. The spinal cord trial was really hard to get use to,(trialed it for 5 days) in order for it to help w/ my pain i had to turn it up so high & then I would feel stim to my entire right side, from my hip to the bottom of my foot. So neither where the best. but... better than norhing @ all! I will be meeting w/ my doc in late July to poss try another spinal cord trail just lower on my spine w/ a different approach (retrograde)to see if that will provide me w/ more pain control.
2 months ago I had a pudendal block. I will never do that again cuz it tripled my pain for a month, no lie!!! Doc was shocked not knowing really why. He did mention to me that I may have some peripheral sensitization so that is why it may have happened. ugh not another problem!
Plz let me know how your trial goes. I agree w/ you that only way I get pain relief is relaxation. But what fun is that. This injury has robbed me of most things I use to do! It's really hard cuz I'm younger & have a family & i cnt enjoy physical activities w/ them. Also, I have had to cut way back on my work hours & job duties.
I just started a pain support group so I'm hoping it will help my "brain" - ha ha & therefore decrease my chronic pain. But when u suffer daily it's hard not to be mad,sad,anxious,tired,hopeless,depressed, ect.
KEEP IN TOUCH

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keri

Posted by @keri, May 2, 2014

@majel
How are you doing? Wondering if you are experiencing pain relief? Since your last post on this site have you tried other treatments?

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prissysharon

Posted by @prissysharon, May 19, 2012

I have right side groin pain for about 15 years. Don't know what caused it. It has progressively gotten worse. 2 years ago I had 3 nerve cut. Can't remember right off which ones but doc said they were inflamed. I felt better for bout six months but now it's back in full force.it's horrible. Sometimes I get a break for couple days. I kept journal of pain but there was nothing to pinpoint what stopped pain or what started it up again. Moved to a new state recently and hav an appt coming up with a nerve doc in nd. Hopefully he has more insight but I'm starting to lose faith.

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keri

Posted by @keri, May 19, 2012

Chronic pain is frustrating. My docs, along w/ Mayo Clinic told me not to cut the nerves cuz you can end up in worse pain than before. Ugg, I can't image my pain getting worse. My pain is from the time I wake up to going to bed. Things that make it worse is walking, lifting, & especially sitting. Are u moving to what part of North Dakota? If so, who is your doc? I live in Bismarck ,ND.
I have trialed peripheral & spinal cord stims. Still deciding what I want to do. I am doing some PT with a female PT that works specifically w/ women who have pelvic/groin pain. I saw her before with no luck,,,but mabey this time:)
My doc is changing his course of action & looking into poss damage to my pudendal nerve vs ilioinguinal nerve. Everything I do brings me bad luck.. I am so thankful for my husband & family for their support:) I have good & bad day, but unfort. theres more bad than good but I gotta just keep on going til I find more relief. I realize that I will never be cured but I want some pain relief!!!!

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keri

Posted by @keri, May 19, 2012

Also my pain started 3 wks after an elective TOTVT bladder sling procedure w/ mesh. I did have it removed but pain is still there! Why did I ever do this in the 1st place?? Ugg, guess I can't go back, but I woud if I could!!!!! I'm praying for a miracle:)

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prissysharon

Posted by @prissysharon, May 23, 2012

i moved to minnesota,close to fargo. the docs im seeing are in fargo.hav appts.coming up for nerve doc so im hoping they know more here then alaska docs.my ak doc did warn me that cutting the nerves might not work,but when so much pain is involved, willing to try anything.its been a little over 2 years that i had the nerves cut and its back worse then ever. let me know if you find something that eleviates the pain and ill do the same.thankfully i also have a wonderful husband that takes care of me but its also so frustrating for him when im screaming.and on top of him working hes having to cook and clean.

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keri

Posted by @keri, Mar 10, 2013

How are you feeling? Still in a lot of pain? Who did you see in Fargo? & did it help?

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majel

Posted by @majel, Jun 5, 2012

Probably pudendal pain. Mine is post auto/golf cartvinteraction. Have had bestvresponse from pudenal nerve blocks. Google pudendal nerve pain and youllbfind a wealth of info. My best relief is inactivity which of course plays heck with all muscles fatigue etc. morphine best pain control. Just being referred for possible spinal cord stims but from what I read. Not good results

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keri

Posted by @keri, Jun 7, 2012

How long have u suffered? What are most of your symptoms? I have researched pudendal neuralgia & yes I have a lot of those symptoms but I also have a lot of ilioinguinal-hypo gastric neuritis symptoms. I have been very medically challenging for all the docs I've seen. They cnt pinpoint my exact nerve or nerves that are injured. All test show nothing & the treatments or therapies I've tried have left me w/ no relief. Believe me I have tried everything!!!

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majel

Posted by @majel, Jun 13, 2012

I was injured June 17, 2005: in a golf cart hit by a car. I had jammed my left leg tight to keep me in the cart and the sidewise hit by the car injured all the muscles in my left groin. I call it a groin whip lash. Didnt have any pain for 10 days and then whammo had the worst pain Ive ever had except childbirth. Hasnt stopped since: 24/7. I wasnt diagnosed until 2008 after seeing multiple docs: orthopods, neurosurgeon, etc etc. Also have had many many treatment options including physical therapy (which made it worse), spinal injections (which made it unbearable), acupuncture (which was awful), etc etc. Chiropractic adjustments, ultra sound and massage have been helpful.

I was again on the Internet hopefully trying to find some new info, etc after another neurologist had suggested my pain might be from the pudendal nerve. I certainly fit the symptom and history picture. I checked for providers and found Dr. Karen Noblett at University of California, Irvine who specializes in pudendal nerve, pelvic floor disorders. Since, luckily, I have a daughter who lives in Irvine, I went to California and stayed 3 weeks, in 2008. She confirmed the diagnosis of pelvic floor myathesia: in other words all the muscles/ligaments in my p
pelvic floor were in spasm, tight as drums, pushing on the pudendal nerve. I suspect that my nerve is caught between two ligaments but that is hard to discerne

My best relief--over time-has been after I have been able to stay in CA and receive a series of injections of small amounts of a steroid and a numbing agent; like 3 times a week. (The first few are unbearably painful but then that begins to ease)

Included in this is to learn to massage these muscles internally (intravaginally) with a glass probe, massage trigger points internally and externally, doing relaxing stretching exercises, etc. Her theory is that this treat,ment over time relaxes these muscles and reduces the over excitability of the pudendal nerve.

I finally did begin to get relief; never without pain but certainly reducing it from 10s to 4s. I finally found another provider closer to home in Overland Park, KS next to Kansas City who also does these injections. They are incredibly painful while the injection is happening, but it truly does begin to help.

I now have found a physician here where I live (Bentonville, AR) who now does a pudendal block: not doing each muscle but just blocking the nerve. It isnt as effective as working on each individual muscle in spasm. I can reduce the pain 5-6 points simply by doing the vaginal trigger point massage myself; I couldnt have made it this far without that ability.

I mistakenly decided to again do physical therapy to build up some core muscle ability; has taken me 3 weeks now to settle it all down.

There is a physician in Phoenix who is cutting the pudendal nerve but is having only limited success: maybe 20% reduction in pain after long painful recovery. This doctor also does trigger point and pudendal nerve injections. There is also a doc in Denver, CO. Id have to look him up.

My best source is a book entitled, "Headache In My Pelvis" by Drs. David Wise and Rodney Anderson. Order from National Center for Pelvic Pain Research, Occidental,CA 707-874-2225. This book is like my Bible.

I dont think most doctors, especially pain docs, know how to treat this. I now am convinced that all the other pain treatment , other than Dr. Noblett, just worsened the pain. Im convinced that Dr, Nobletts theory, as is Drs Wise and Anderson, that this trigger point treatment is the way to go.

Im like you; used to be an avid golfer, working, gardening, very very active and over time my world has become smaller and smaller. The worse thing is sitting: that is awful. I carry around a pillow always. Because I never know for sure when I;m going to have a flare I dont do much socially any more, though do play bridge once a week. But I never sit very long, I get up and walk around, or just stand behind my chair, etc.

I do not believe there is a cure for this malady; not yet anyway, but I do agree with the muscle relaxing, stretchiong exercises, trigger point massage, and cortisone injections of the trigger points in the pelvic floor are the most effective. And pain medication: I take a long acting morphine and shorter acting Dilaudid, Lyrica and Valium to sleep. I do spend a lot of time sleeping; more than I want but still must have the pain meds; but at least with the above treatment the meds cover the pain. I understand morphine is the med of choice for nerve pain.

Remember, the injection into this very tight trigger point in the pelvic floor is excrutiating and at first will cause a pain flare of a day to multiple days. But as the inflammation reduces the level of pain decreases.

I get terribly despondent and depressed at times but am just now beginning to accept that this is how it is: no cure. I have to live with this pain, but I do have control of the LEVEL of pain.

Guess thats enough for now. Id like to read your --and anyone elses thoughts.

/';]]]

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kellym

Posted by @kellym, Mar 10, 2013

I have a very similar problem to yours--inguinal nerve damage and then pelvic floor issues. Can you tell me more about the nerve blocks? You said the spinal blocks were not effective--did they worsen the pain? Where was the block? Ganglion impar? Is a pudendal block different from a spinal block? You implied that was hepful, but not as hepful as trigger point therapy. I would be very grateful for any insights, as the pain specialist suggests blocks as the primary treatment. Thanks for any replies

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keri

Posted by @keri, Mar 10, 2013

Yes, a pudendal block is different from a spinal block. Pudendal nerves are peripheral nerves, which are a branch of nerves outside your spine and the spinal block is a block within your spine. The spinal blocks did not worsen my pain, but they gave me absoulutely no relief. My pudendal and obturator blocks increased my pain, ten-fold!!! Docs don't know why. The only series of blocks that helped me, but only for for 6-8 hrs, was the ilioinginal-hypogastric block. The only thing that this block told me was these are the nerves involved in my injury. No diagnostic test have been able to show anything? If you don't mind sharing- how did you injure your nerves? I have had daily chronic pain for 4 yrs & still looking for a miracle doc.

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kellym

Posted by @kellym, Mar 10, 2013

Thank you for your reply. I am really sorry to hear that your condition has lasted for four years. I had mesh inguinal hernia repair about five years ago, and came out fine, with some residual nerve tingling. After slight groin pain after exercising, I went to the urologist. The pushing on the hernia repair to check it put me in extreme pain. Misdiagnosed for months, I was sent to the wrong kind of physical therapy. The inguinal nerve block was done incorrectly--that pain did subside after a month. Etc. etc. Now I have chronic inlingual neuralgia as well as pelvic floor spasm/dysfunction of some kind, which, after recent electroacupunture, increased to a very serious state. Doctors have told me that pelvic floor problems cannot be diagnosed or treated. I've heard of the the book you mentioned, Headache in the Pelvis--I've basically read about the approach in some of the articles by those doctors in medical publications. Anyway, I wish I had a good source for you, but I think you have investigated more than I have. While I have seen over a dozen doctors and two physical therapists, I am still usure of where to turn. Do you know what kind of spinal block you had? The pain doctor has suggested a block of the ganglion impar for the pelvic floor problem. Perhaps they also use L1. I'd be glad to hear what spinal points were used in your case..

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keri

Posted by @keri, Mar 10, 2013

I've had a transforaminal injection, I believe L1-L2 area and I also a caudal steriod injection, Neither changed or increased my pain. I have been in pain for so long that I'm not scared to try much, except removal or denervation of my nerves.
In my opinion I would try the ganglion impar steriod inj it will be either diagnostic or a therapeutic for you and your doc. Good Luck!!
I have never saw a urologist for groin pain, mayb I should. What speciality doc are you working with most?

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kellym

Posted by @kellym, Mar 11, 2013

Thanks for sharing your experience and point of view on the nerve blocks. I'll certainly let you know about any knowledge I gain from research or experience in this area. My experience has been that urologists do not treat this issue--in fact, they overlook it. Men with this problem often go undiagnosed and finally go to surgeons. Many gynocologists, as you know, are more familiar with the condition. It sounds like you have already found help with myofascial physical therapy. I saw online that St. Joseph's Hospital, Phoenix, AZ, specializes in pelvic nerve conditions, including pudendal neuralgia.

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rgs76

Posted by @rgs76, May 1, 2014

I just wanted to say thank you for your very detailed and informative comment. I write this as I've been awakened from pelvic pain. It can be such a lonely journey at times. I am so grateful to have found this website. Thanks to all of you for being brave enough to post your personal info and I hope we all find relief soon!!!

keri

Posted by @keri, May 2, 2014

Not sure what all your pevic pain issues are. But research pelvic neuro-muscular disorders, paying particular attention to pudendal nerves.

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chronicpaqinconquered

Posted by @chronicpaqinconquered, Jan 7, 2013

I had chronic back pain for the past 40 years and I controlled it with a TENS and very powerful drugs. About 7 years ago, I tried pulsed radio frequency treatment for my back. It took my pain level to a 2 from a 10 (Scale 1 to 10, with 10 you wish you could die). I had treatment on S1, S2, S3, L4, L5 and L2.on my lower back. First it lasted a year for about 6 years. The last two years it lasted 6 months. I am not medically inclined, but it was like a miracle. I don't know if this will help you, but it is worth a try if a pain doctor who performs this type treatment thinks that it may help you. You are in my prayers.

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keri

Posted by @keri, Jan 8, 2013

Happy to hear that PRF helped you. I tried this procedure @ Rochester Mayo & it made no difference. The thing with my injurgy is that no test show what nerves are damaged. We have a good idea as to what nerves they are but it's very difficult to disrubt their pathways. I have recently tried my 4 stimulator trial & it's been hard to get coverage in the area I need. Inguinal nerve pain in females is very hard to manage. It's been four years & I have not given up! I'm always open to ideas but as for now I'm coping w/ my chronic pain. I participated in a 15 week chronic pain group & they taught me great ways to cope & control my neuritis;) My pain used to control me.! Now I control it!!!!! The mind is a wonderful thing..... YEAH! I hope you continue to to live your life with little pain. One day I will:)

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keri

Posted by @keri, Apr 3, 2014

How are you doin?

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dtroy

Posted by @dtroy, Apr 22, 2013

I had this done last week - a rfn, rhizzotomy, ablation of the ilioinguinal nerve. it was very painful, but has provided some relief and I believe i'm at the beginning of the relief stage - that has me hopeful.

i get concerned that a lot of people jump to the pudendal nerve - you really need to have nerve blocks to see if there is any relief there, before examining entrapment surgery. NO ONE wants painful sitting or genitals, but the pain origin may be elsewhere. My process was this - nerve blocks on every possible offending nerve, while performing pt, avoid pain killers as they only hide the pain, evaluate if wide spread pain could be a result of clenching or positioning to avoid offending nerve pain.

I would promote RFN before nerve surgery as surgery has massive ripple effects, and most of the time is not reversible. I know a lot of women (I'm a man) who have had pudendal entrapment surgery and they still have pain, and are incontinent.

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fmassad

Posted by @fmassad, May 19, 2013

Hi I'm from Brazil and I have pain in my rgith groin and right pubc area and it started just after a laparoscopy for severe endometriosis. My pain started 3 years ago but it is getting worse.
I went into many doctors and some of them have told me that it proably is some damage in ilioinguinal nerve and hypogastric nerve.
My pain stars into my abdome and goes down to my pubs and my leg.
They tried to block these nerves which provide some temporary relief to my pain in first, second and third tried but in my fourth try it didn't work and my pain got worse.
I'm now doing a treatment in the best brazilian public hospital - Hospital das Clinicas.
i'm taking tramadol every 6 hours and Lyrica twice a day but this is not able to stop my pain. i'm also doing physiotherapy( trigger point massage) which provides me some relief.
This pain has changed my life because of this I'm using a walking stick, I can't drive because the movement to accelerate and dent the car make my pain insupportable.
I don't believe it is going to get better.
Do you know which test can diagnose for sure these nerves problem? Do you know different treatments rather toses that I already took?
Do you have problems to walk or drive?
Please help me because I have a little girl with 4 thar needs me and I'm not able to haldle daily tasks.
Thanks

keri

Posted by @keri, Aug 2, 2013

Currently I'm doctoring w/ Dr Stanley Antolak,, Urologist, in Edina MN, @ MAPS pain clinic. I came across him after being persistent & researching my symptoms, Which are rt. pubic bone pain, rt. groin & inner rt. thigh pain. Pain worsens when I sit, drive,bend, stretch, push, pull ,lift, exercise,, work, have increased stress, ok most everything, except lying down & relaxing, which is hard for me to do:( Dr. Antolak ran a series of diagnostic tests, ones that I have never tried before. He found out that my pudendal nerves are damaged bilaterally. I was shocked to find this out because I didn't think I had the common symptoms of this type of neuralgia. Although, when talking w/ him he told me my symptoms are not uncommon. That pudendal nerve damage can have several symptoms. He came back out of retirement & went to France to study the Pudendal Nerves & pelvic floor. So I feel very confident on his expertise. He actually called me after hearing about my pain symptoms & offered to exam me. His staff has told me that people from around the world come to see him. There are other docs that treat for this kind of nerve damage but live to far from my town. So his treatment plan for me is a series of 3-4 pudendal steroid injections & Aklock canal injections, each 4-6 weeks apart. A large percentage of his pt decrease their pain after going thru the series of inj. He also strongly suggest several things to avoid for a lifetime to keep these nerves calm. Since I have been in pain for nearly 4 yrs he told me I have developed central sensitization of my pelvic floor muscles & nerves but by following his treatment plan & a few med changes he hopes to calm my pelvic floor. He did tell me though that he will still keep in mind my ilioinguinal nerve being possible damaged also.( I've had this nerve blocked 3 times & RFA done but it never helped more than 6 hrs) I have had many high frequency MRI scans done to try & find what nerve(s) are involved in my pain but all showed nothing.
One MAJOR part of my pain control is having Dry Needling done by my specially trained PT. (it's covered by most insurances) It may be a lot like you trigger point massage, because she sticks these needles in all my trigger points. I see her about every 10 days & I couldn't imagine my life with out this therapy. I hope to say the same about Dr. Antolak therapy plan for me:)
He did tell me that he has treated a lot of female pt with endo & pelvic pain, So research him on the net & see what you think. Best Wishes.

fmassad

Posted by @fmassad, Feb 6, 2014

Hi Keri,
How are you? I'd like to know how is going your treatment? Any progress? Can you walk and drive without any problem?
Best wishes

tomb1

Posted by @tomb1, Feb 8, 2014

I am sorry to hear about your pain. I went through a 3 1/2 week pain rehabilitation program at Mayo Clinic F all 2012 for chronic groin pain I have from n erve damage as the result of a surgery. They took me off all my pain meds and taught me how to manage the p ain using techniques like deep breathing, relaxation, distraction, moderation and modification. Sure, I still have the pain but I control it now instead of it controlling me. I highly recommend the program.

keri

Posted by @keri, Feb 9, 2014

What's your secret to cont. using the pain controlling techniques that Mayo taught you? My life gets crazy (just like everyone's else) w/ family, activities & part-time work. Please share how you incorporate breathing, relaxation ,distraction, ect. into your daily life. I forget about myself & put them 1st, along w/ many other things that go on in life. I find myself not taking the time to care for me! Although, that's my own fault:/ I have an awesome family & group of friends that keep me sane every day, haha

tomb1

Posted by @tomb1, Feb 11, 2014

Hi Keri. We were taught cognitive behavioral therapy at the Mayo pain program. Your thoughts, feelings and behaviors are all connected. One affecting each other. How you think can cause different emotional reactions, physical reactions and behaviors. A saying I remember form the program: "I am driving the car, not pain. Pain is just a passenger." Check out the program. I found it very valuable. Tom

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keri

Posted by @keri, Feb 9, 2014

Thanks for asking. Sad to say that I'm not doing any better, actually worse! Since July I have had 4 pudendal , 1 gentifemoral & 1 ilioinguinal steroid injections by Dr Antolak & his team of physician's. None of these helped, they actually worsened my pain. I have also developed rt sided rectal pain & still fighting rt sided pain in the areas I have mentioned in my past posts. Dr Antoalk told me I have developed central sensitization "spinal cord windup" This is not unusual to get after years of living in moderate to severe pain every day.
I am still working with Dr Antolak, He is not giving up on me. He is going to have me visit with Dr Richard Marvel, in Baltimore via phone to see if he can help me. So I am waiting for his call & I guess go from there.
I have considered going to Mayo pain rehab clinic, like Tomb has mentioned in this thread, but have not gotten that far yet. Not sure why??? It would be hard to leave my kids & spouse for that long. I have tried a chronic pain group for 3 months, meeting once weekly & yes it did help, but I found myself not cont w/ the techniques they taught me as time elapsed. And that's my own fault!!!
HOW ARE YOU DOING?

telvaker

Posted by @telvaker, Apr 1, 2014

So,the pudendal blocks did nothing but make your symptoms worse? Sorry, but how long have you had this problem? I'm going on year 2 and am thinking of having the nerve blocks but have huge concerns. I cannot imagine things getting worse. Opinion? How are you feeling now? Take care

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keri

Posted by @keri, Apr 1, 2014

I have had chronic rt sided pubic bone, groin, inner thigh to knee, & rectal pain since 2009. Dr. Anotlack eval. me & he ran a series of tests on me including test on my pudendal nerves. These tests showed damaged to them. So logically we both thought by doin these pudendal inj my pain would either go away or lessen.
But to get back to your question all 5 CT guided pudendal blocks did absolutely nothing for my pain, except worsen it, which I didn't think my pain could get much worse! Guess I was wrong!!!!! The Doc thinks 2 reasons why this happened- even though I have pudendal neuralgia-
1st my pudendal nerves are not my primary source of my pain, (like we both thought) it's another branch of nerves, but which nerve(s).So Dr. Antolack referred me to Dr. Richard Marvel in Annapolis, Maryland in June for yet, another opinion, I'll have to stay there for 5 days in order to be thoroughly eval & treated (no surgery is planned that visit, just an MRN, series of tests
& injections)
2nd since my pain has been so intense for so long my body is developing central nerve sensitization or "spinal cord wind-up" UGG

TE please give me more info on your pudendal pain & what treatments you have did & what types of docs you have saw. There are very few docs that want to deal with this type of condition. I live in ND & there is absolutely no doc close, which stinks cuz air fair is outrageous expensive.

Can't wait to hear back from you,
Keri

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fmassad

Posted by @fmassad, Apr 2, 2014

Hi Keri,
It is Fabiana from Brazil.
As I told you in other post, my pain also got worse last time I block my nerves.
Honestly, I don't believe in this kind of treatment.
You said " 2nd since my pain has been so intense for so long my body is developing central nerve sensitization or "spinal cord wind-up" UGG"
My doctor said the same thing to me. If this is your case, what does your doc suggested as treatment?
I'm so tired about my pain and I agree with you when you say that the doctors are not interested in treat our problem. I'm glad that I found dr Rogerio Adas and he is helping me on this fight.
I hope we can find a solution for our problem (ASAP).
Fabiana

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telvaker

Posted by @telvaker, Apr 2, 2014

I've never heard of spinal cord wind up? That terrifies me. So would anyone recommend a pudendal nerve block? The doctors seem to be so flip about them. If you want one then have one they say. If there are so many negatives involved why wouldn't they be more cautious in their recommendations. There have to be people out there with positive results? I'm really torn on having one. If a person waits too long to try it then the spinal cord wind up comes into play but if you don't have one you don't give the nerve the opportunity to have the steroid possibly heal that nerve? Any advice?

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telvaker

Posted by @telvaker, Apr 2, 2014

Thanks for getting back to. This started about 2 years ago. During my walking exercising I would notice a pain in my pubic area. I am prone to yeast infections so thought I was getting one. Tests came back negative numerous times. Mt obeying referred me to a pain management dr that told me I have pelvic wall dysfunction. I did pt for at least 6 months then turned to acupunture. The acupuncture seemed to help somewhat when I asked her to start treating me like I had pudendal nerve issues not pelvic wall dysfunction. Then I started considering nerve block. Went for a consult and they acted like it would be no problem. If u want one have one. Never did they say it could get worse nor did they mention anything negative about it. Of course I read online the negatives but I'm exhausted from seeing so many doctors I feel like I cannot describe my symptoms anymore or I'll throw up . I have a lot of butt pain, burning in my vulva uthera and up my butt crack, inner and outer thigh. When I read other peoples posts I wonder do i really have pudendal problems because I can work , rarely sit down at work, but I can function. Is this going to get worse as time goes on?
I live in Wisconsin about 30 minutes from the Minnesota border. Any suggestions you have would be appreciated. I want to try the block but am scared to death. Like I said I can function now and can do things with my family. I have no bathroom issues at all. Will a block bring that on or do I not have pudendal problems.
Thanks again for replying and listening
The

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keri

Posted by @keri, Apr 2, 2014

TE
It's hard for me to recommends pudendal blocks since they made me miserable but you say you can still function & work so if your ok w/ the level of your pain & what u can do then I wouldn't mess with it. Are you taking any prescription meds for nerve pain.?I'm not talking about pain meds. I'm asking more like anti neuroleptic drugs or antidepressant ,ect? If not I would give these a try 1st. Please u tube Dr Stanley Antolak & watch his video on describing pudendal neuritis. I'm so glad I did see him & go through the series of injections. My pain is an 8 most weeks. It used to average 3-5 weekly but not anymore,so I'm willing to try most therapies. I'll let you know how my appt goes in Maryland w/ Dr Marvel in June. He talked to me on the phone for an hour & reassures me that there is a high resolution MRI called MRN that he will run, & perform different types of injections.
Ones I've
never tried yet. YES I'm SCARED for this appt but I just want some relief:)
Keep in touch!

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keri

Posted by @keri, Apr 2, 2014

I have not asked what to do bout central sentitzation yet. I've heard of Ketamine injections. Google that to see if that's something worth looking into. What treatment has your doc recommended for over sensitivity? Once I have my appt Maryland I'm hoping that he is able to block some different nerve pathways to lessen this spinal cord wind up. When I asked him about it he says he sees it all the time in his pt w/ prolonged neuritis. He mentioned if you can find the right pathways to block then it should help. He was extremely knowledgeable about the female pelvis & all the nerves.
My fingers are criss- crossed, even my toes are, haha, that he can help me.

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telvaker

Posted by @telvaker, Apr 2, 2014

I've did try some anti convulsants gabapentin and amitripyline it did not do anything. I have had a few chiropractor Appts focusing in my sacrum and Lower back. Those seem to help with the burning.
I worry that if I don't do the blocks the nerve damage will escalate and then what? I've noticed that when I use prep. H I feel better also but I think there is a small amount of anesthia in there and that's helpful?
My chiro thinks it's the sensory part of my nerve that is irritated/inflamed. How does that ever heal if I don't use steroid injection?
I feel like My symptoms are manageable because I stand 90 percent of my work day.
I am confused and frustrated because I had made up my mind to have the blocks because I felt that would give me the best shot at healing the nerve. I can handle the pain I have now but I can't handle anymore. How long have you been dealing with this and how long after it started did you have your blocks? I'm afraid of making things worse more than anything. Have you had contact with people that have had good results with the blocks.
Thanks again,
Theresa

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telvaker

Posted by @telvaker, Apr 2, 2014

Did your dr tell u that is why your blocks didn't work was because of spinal wind up? Why wouldn't they have told u that was a possibility before they did the blocks? I have never heard of that before . If the longer u go with pain lessens the possibility of a block giving positive effects shouldn't we have them sooner rather than later. I'm leaning towards having them but now and more fearful than ever. The whole point is to get that steroid in there to try to get the nerve healed right?
Too much to think about and too many variables.
Hope you had a good day

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telvaker

Posted by @telvaker, Apr 2, 2014

I really have to think about what to do here. I feel like if I don't try the block to at least confirm pn how can I know what road to take?
I wish you the best in your journey. This is the scariest thing I have ever bee thru. I have never heard of such a handicapping nerve problem.
I hope things get better for you and that you get answers .
Please keep in touch.

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keri

Posted by @keri, Apr 3, 2014

TE
Even tho my test show that I have PN, Dt Antolak tells me that the reason I failed the PN inj is because PN is not my primary nerves involved, but he had no way of knowing that was going to be my situation until he performed the series of steroid inj. Because my pain cont & it not getting better he is sending me to one of his colleges to eval me & look @ my obturator nerve along w/ my PN diagnosis.
I have been told that the longer you go with chronic pain that you have a greater chance of developing CNS windup, or hyperexcitabile nerves. But if a doc can block the neurons pathways it is suppose to limit the magnitude of one's pain. In my case over these past 4 yrs no doc has been able to find my PRIMARY injured nerve:/
I have not personally talked with other pts who have had the PN inj ,only Dr Antolak. He told me the percentage of his pt & the national average PN pt who have these inj get better or worse. ( I can't remember the #'s tho, but the internet would)
Take the time to read my post from the very begging & you will be able to see what I have all tried. Which may help answer some of the questions you have asked me;)
It is very scary to have this debilitating condition, Especially being young, like myself, we have so much we want to do! It sucks!!!! You need a great support system to keep moving forward. Only us who suffer from this painful neuritis know what we go through every day. I find some mental relief just going on the internet, or a site called Pudendal Hope, or just on YOU TUBE. For some reason I have days that I feel like I'm the only one that has this crazy-ass condition, but deep down I know I don't!!! If that makes any sense!!! HAHA!!! So by listing to others who have this & to see what they have done & how they cope I get a sense of hope that some day I will get better.
Let me know if you decide to have the inj & how it helped. BUT... go to a Doc who works with pelvic nerves & who has lots of experience w/ the PN inj. You said you live in WI, look up Dr Antolak, he's probably the closest to your state.
Good Luck.

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keri

Posted by @keri, Apr 3, 2014

I agree, injections can help you know what nerves are involved & therefor help come up with a treatment plan.

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dtroy

Posted by @dtroy, Apr 3, 2014

Does anyone know of someone who has been successfully treated for this disorder and who has returned to a normal state without drugs or estim? I've had my pain for 8 years and have maintained my general state (pain at 3-5) but sit on ice for relief.

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keri

Posted by @keri, Apr 3, 2014

The pelvis is full of nerves. What nerves where injected? Have u had a MRN? Not a MRI. Google it:). I will be having a MRN in June followed by inj but will be traveling from North Dakota to Maryland just to accomplish this. I'm @ the point in my life that I will do anything besides surgery to see if it helps. It gets so expensive, even w insurance to have a chronic illness, especially when one has to travel. I thank God every day for my spouse, kids, immediate family & girlfriends for all their support. I'm not sure if I could physically or mentally function w/o their support.
Have you been tested for pudendal neuralgia? I can't sit. If I do it increase the constant pain I have to an unbearable state. Driving does hurt but for me it's cuz I'm sittin. Walking is hard too! Generally my mornings are the best & progressively worsen as the day goes on. My activity is very limited but I still have a hard time slowing my daily expectations I have for myself & rarely relax. Cuz if I do my mind focuses just on my pain & not relaxing. Keep in touch.

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tomb1

Posted by @tomb1, Apr 4, 2014

I have chronic pain groin pain. Was considering surgery by Dr. Ducic in Washington DC for nerve removal. Like many I travelled across country to look for a pain solution. Instead I attended a 3 week pain rehabilitation program at Mayo Clinic. They helped me get off the pain meds and learn techniques to help manage the pain. I highly recommend the program.  While I still have pain it no longer is the driver but the passenger. 

aliciadayan8

Posted by @aliciadayan8, Aug 24, 2016

can you tell me how to refer this treatment in the Mayo Clinic? I can find it in their web and whant to know more about it. I live in argentina so if I go to US I have to have all the information, can you help me?

colleenyoung

Posted by @colleenyoung, Aug 24, 2016

Hi Alicia. Here is further information about the Pain Rehabilitation Clinic at Mayo Clinic's 3 campuses: Florida, Arizona and Minnesota http://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/overview

You can call to find out more information and to consider scheduling an appointment http://mayocl.in/1mtmR63.

aliciadayan8

Posted by @aliciadayan8, Aug 25, 2016

thanks coleen! Y spoke with them by telephone and are waiting for another call in orther to have more information

colleenyoung

Posted by @colleenyoung, Aug 25, 2016

Fabulous. Do keep us posted on when you start and how it goes.

ando

Posted by @ando, May 18, 2016

Hi there, I am not sure you will see this as this is an old post but I am going through similar circumstances and I wanted to reach out to seek some help/advice.

Quick update on mine: 4/2015 had RT inguinal hernia repair. Three weeks later went in to have the RT inguinal nerve removed (denervation). This didn’t resolve shit. A few weeks afterwards they went in to remove the RT testie (sorry if that is TMI). Since then I have been treating with a pain management MD that has tried 10+nerve blocks, steroid injections, multiple different nerve medicines, pain medicines, etc.
I am closing in on a spine cord stimulator (possibly in the next few weeks). At this point it is starting to affect daily functions, work, and everything else about being a father and husband

Any advice or opinions?

timfitz

Posted by @timfitz, Jul 19, 2016

i did a trial with the new St Jude stimulator it was a very bad experience and didn't work

colleenyoung

Posted by @colleenyoung, May 23, 2016

Welcome @ando. I moved this thread into the Chronic Pain group to bring this conversation to the attention of the currently active members. As you noted this thread is older, but I'm hopeful that the members who were participating in this discussion will return to Connect, which is now an active community again. @keri @tomb1 @telvaker @katrinaramquistwesson and anyone else reading this, if you have any problems logging in or joining the conversation, please send me a quick note using this form https://connect.mayoclinic.org/contact-a-community-moderator/

Ando, I can understand the fear of getting treatment that could potentially make the pain worse. Many in this group understand that apprehension.

timfitz

Posted by @timfitz, Jul 19, 2016

Does anyone know about an endoscopic surgical intervention to oblate the nerve or for that matter any procedure to oblate the genitofemoral nerve or the other nerves involved with night mare we share?

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