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.

Liked by Karri


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????

Liked by Karri

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.

Liked by Karri

@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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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.

Liked by Karri

@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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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.

Liked by Karri

@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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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.

Liked by Karri

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.

Liked by Karri

@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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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!!!!

Liked by Karri

@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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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:)

Liked by Karri

@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 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.

Liked by Karri

@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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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

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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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

Liked by Karri

@keri

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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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

Liked by Karri

@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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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!!!

Liked by Karri

@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 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.

/’;]]]

Liked by Karri, kristine

@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 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.

Liked by Karri

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