Chronic inguinal pain

Posted by Keri @keri, 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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@prissysharon

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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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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@prissysharon

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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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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@keri


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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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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@prissysharon

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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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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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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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

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@fmassad

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

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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.

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@fmassad

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

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\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

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@fmassad

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

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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.

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@fmassad

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

Jump to this post

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?

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