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Keri
@keri

Posts: 40
Joined: Oct 17, 2011

Chronic inguinal pain

Posted by @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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Keri
@keri

Posts: 40
Joined: Oct 17, 2011
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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tomb
@tomb1

Posts: 6
Joined: Feb 12, 2012
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
@keri

Posts: 40
Joined: Oct 17, 2011
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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tomb
@tomb1

Posts: 6
Joined: Feb 12, 2012
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
@keri

Posts: 40
Joined: Oct 17, 2011
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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tomb
@tomb1

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Joined: Feb 12, 2012
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
@aliciadayan8

Posts: 4
Joined: Aug 23, 2016
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
@keri

Posts: 40
Joined: Oct 17, 2011
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
@majel

Posts: 3
Joined: Jun 05, 2012
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
@keri

Posts: 40
Joined: Oct 17, 2011
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
@keri

Posts: 40
Joined: Oct 17, 2011
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
@prissysharon

Posts: 8
Joined: May 19, 2012
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
@keri

Posts: 40
Joined: Oct 17, 2011
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
@keri

Posts: 40
Joined: Oct 17, 2011
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
@prissysharon

Posts: 8
Joined: May 19, 2012
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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