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Neuralgia llioinguinal Neuralgia llioinguinal

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  #51  
Unread 06-19-2002, 07:11 PM
Therapy

As a 20 year veteran of the pain wars (pre hysterectomy)
and living 11 weeks hysterectomy post op,
I would like to mention that the buoyancy of a wet suit
as swimming attire in a pool gives new meaning to life when on the front lines of dealing with the reality of chronic pain.
For years I didn't swim because the water caused such discomfort.
Then I bought a wet suit.................................
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  #52  
Unread 06-20-2002, 04:48 AM
Neuralgia llioinguinal

Interesting Kamie. For me, the pool is the only place that I don't hurt. When I'm in the water (at least recently) my pains seem to float away. Well at least for a little while. And that could change on any given day.
  #53  
Unread 06-20-2002, 08:37 AM
Neuralgia llioinguinal

WOW, what great posts. i am at the beginning of the pain ride and it really helps to know that there are so many avenues to take. thank you for taking the time to enlighten us all.

kim,
is this thread going into your encyclopedia?
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  #54  
Unread 06-20-2002, 08:58 AM
Neuralgia llioinguinal

Hyster-Sisters,

Medications that I have been injected with for the treatment of Ilioinguinal Neuralgia in the doctors office are:

Depomedrol 80 mg
Lidocaine
Marcaine
Bupivicaine

I was fortunate enough to have immediate relief that lasted about 30 minutes (take it when I can and I really enjoyed it)
and after the anesthia wore off, I felt the pain from the shots.
(left bruising that I've never had before.)

These were injected by the pain specialist on May 9th with pain rated at numbers 4/5 (down from constant 7's).,
today is June 20th and pain is down to 1/2's...
praise God for healing and His earthly ministers.

You may recall, that I have discontinued the neurontin and started Elavil.
Have been complimenting these medications with acupunture x2 week and chirocpractor x2 week.

May never know what of this mix is most effective, but will continue doing what I'm doing prayfully hoping that this indicates permanent healing.

I spent some time on the hyperlinks that were provided and found some excellent, excellent materials that I will share with my physicians and family members.


Again, this information is simply provided to be of benefit to others in similiar situations and not intended to take the place of medical advice as I am not a doctor nor medical professional.

Praise God for hystersisters.com
  #55  
Unread 06-20-2002, 10:14 AM
Neuralgia llioinguinal

  Quote:
Originally posted by Cynthia
kim,
is this thread going into your encyclopedia?
Cynthia, it sure is!

Meri-di,
The depomedrol was what helped me the most. Unfortunately I think it may have caused me some other problems, namely with my tummy.

I need to get my tummy straightened out and than I will have to deal with this continuing nerve, pelvic and incisional pain and extreme tenderness.

Thanks for sharing what's working for you.
  #56  
Unread 06-20-2002, 11:53 AM
So glad they helped!

  Quote:
Wow! Thanks Angie! Guess I've got some reading to do. The removal of my damaged nerves hasn't taken care of the problem.
I'm so glad you shared that Kimmer! In talking with the new "cutting edge" type pain clinic, they told me that they wouldn't recommend removing the neuroma as it would probably only grow back again. I said, "Well you can forget any invasive procedures...I think I've had enough of that". And they said, "We concur".

Makes me feel better to know that while I've been second guessing myself, that your experience helps to fortify my stance.

I know sometimes I come across like "superwoman" with all the answers. Lord knows, I don't.

I'm searching like everyone else. I just think it's great that we can all share our experiences, realize that what works for one may not for another, and that there are other options out there we can explore and I find out about new ones here all the time!

In another couple of months, I'm scheduled to have lidocaine injected intravenously so it goes thru out my whole body. They said the RSD and the neuroma at the top of the vaginal cuff is causing some of my organs to inflame along with the other tissue in there (big fat duh - I've had the ouchies really bad lately)

I sure hope it helps. They gave me the lidocaine patches, can't say as it helped much, but at least they're trying. They did say they usually have more success with the intravenous lidocaine and that it's 40 years old as far as how long it's been used to treat chronic pain.

Wow...what a trip I've had on this road!

Luv you all...
  #57  
Unread 06-21-2002, 10:18 AM
Neuralgia llioinguinal

You're welcome Angie
Quick question, have you come across anything in your research of anything they can do to stop the nerves from regenerating. I've been doing some looking but can't find anything, than again I'm not as good at researching stuff.

Since my tummy has calmed down some from the special diet and meds, the pelvic and side pains have increased tenfold. Also getting alot of what feels like lightning bolts. I picture a downed electrical line with those wires flapping and sparking.

I was thinking, why couldn't they tie the ends off, or perhaps burn them. My MIL actually suggested the burning as she said that is what they did when she had her tubes tied.

I know you're busy, when you have a chance I'd appreciate any thoughts you have.

P.S. Welcome home Angie! We've missed you!
  #58  
Unread 06-21-2002, 10:24 AM
Neuralgia llioinguinal

I saw a show on tv awhile back and they were doing pain mapping (awake laparoscopy with a tiny tiny scope and they poke around and you tell them where it hurts) when they would find an area that hurt they would freeze it with liquid nitrogen......they did this with nerves as well.....Kim's post just made me think of it again....this isn't an option for me as I'm deathy allergic to lidocaine (local anesthetic) and they use it bigtime for this.......just another option for you to check out there girls!!
  #59  
Unread 06-21-2002, 10:37 AM
Neuralgia llioinguinal

Hello i am kinda new to this so i dont know if my input will help but i hope it might help someone... I am 29 and had a complete hysterectomy the day after my 25th b-day . its a long story on what i have been through but ill get to the point . its been a little over 4 1/2 yrs now and i have had tingaling in my vagina and never knew what it was.....I had asked dr.s and they had no clue what the problem was... so i thought it was all in my head. so i lived with it . Haveing sex was very uncomfortable but i did it anyhow... I just basically tried to ignore the pain and close my eyes and wish it to go away . well ....... i also had pain on the sides of my hips. i mean deep pain .... i can only explain it as a charlie horse that wont loosen up . it has made me fall to the ground at times too . Well one day i got tired of the pain so i went in with a bacterial vag . and i asked the dr. to tell me what the bumps were in me. he said they were stitches... so he sent me to a specialist . well of course she couldnt see them becuse my infection was gone. but . she did say that my lining was very thin and to use some estrace cream . ( man what a mess and moody . wow....i was moody ) and so she refured me to a physical therapist ...... I was like what r they going to do for me? I had no clue. well . i made an apt. and i went in not knowing what they were going to do to me. she took me in a room and asked me a whole bunch of Questions and then she checked to see if i was in alignment ( that is a big part of pain too is when u r out of alignment . i had congenital hip when i was born so i am out of alignment all the time and it pulls on my left side ligament ! ) so then she asked me to take my bottoms off and she did a run of tests on me. i dont want to get into the tests but if u want to know i can post at another time or u can e-mail me and i can tell u then . it will just take up a lot of space... so anyhow. what she found from me . is that i have nerves that were trapped and that they were making my muscles repond wrong . The tingaliing in my vagina was my muscles coming to life and getting blood back in them again . They do quite a bit of vaginal work too to release the muscles so they will function correct . She now works on my lower back ...... man thats where it hurts too . well when she releases that muscle then my muscles in my front act up . so then she works with them too ! I didnt think it was going to work . But that is the neive in me. but i gave it a try .....i go 2 times a week and ill tell u what i have got so much relief from this .... i cant say i dont have pain but i do have some relief . she got me a tends unit so when i am in pain i slap it on and use it and it takes my pain away ..... till i move wrong and wack myself out of alignment !See my specialist cant really do much for me. to do surgery for scar tissue removal . they say i build a lot of scar tissue so that is out of the Question . and to inject it . i dont know.... about all that i have read and heard that it doesnt always work . and can make it worse..... but to be honest in almost 5 yrs....... going to see a physical therapist was the belssing for me...... CAN ANYONE ELSE TELL ME HAVE U BEEN THROUGH THIS PROCEDURE? IF SO CAN WE TALK ...? AND IF U HAVENT . U CAN E-MAIL ME OR POST AND ILL TRY TO HELP AS MUCH AS POSSIBLE.
I AM SORRY ITS SO LONG .
CHRISTINA
  #60  
Unread 06-21-2002, 10:51 AM
Well, there learning in this process too (the doctors)...

I get so frustrated, but the doctors are frustrated too (those who care) because pain is just now getting REAL attention and they're working on REAL treatments.

From what I undertstand, there's no real way of preventing the neuroma's except from the skill of the surgeon. These nerves are so tiny that they can't be seen thru the laparascope alone, and everyone is wired differently do boot. Talk about a double condundrum!

This is what I know (for what it's worth):

1) One option is the concious pain mapping that Gidge brought up and Dr Cook has been doing this one since he was located in Louisiana (quite a while ago) but it also runs the risks of more adhesions....so that needs to be taken into consideration.

www.drcook.com

2) The option they're trying with me is a tinge unit (to stimulate the muscles) and the lidocaine treatment to try and stop the inflammation at the same time. Everyone seems to be in agreement right now that surgery will make me worse (everyone's different, this is just what they've decided for me).

3) Drugs: like neurontin, depakote, and elavil in very low doses will "calm" the nerves down.

I just had a very good friend go thru 2 surgeries to try and alleviate this nerve pain...she says it's worse. That's my fear. But yet others have it and notice immediate relief. Dr. Cook has many success stories on his site.

So, it really is a matter of finding what's right for you...

I'll keep looking kimmer, but this is what I know for now.

I, too, have the lightening thing - the last time this happened to me...i went blind. It's plenty scary....

Kimmer...and to all of you.

Here's another reliable resource:http://www.ninds.nih.gov/

And another:
http://www.neurosurgery.org/aans/

And another:
http://www.neurosurgery.org/health/p...?DisorderID=22

And another:

http://www.chiroweb.com/archives/19/03/13.html


And another:
http://www.glendalememorial.com/wsj/w7-01_5.html

And another:
http://216.239.51.100/search?q=cache...hl=en&ie=UTF-8

And another:
http://www.agmc.org/neosmpt/neo6.asp

One more:
http://216.239.51.100/search?q=cache...hl=en&ie=UTF-8

And one more:
Ooooh the illusive tailbone pain:
http://www.ivis.org/special_books/Br...r_frm.asp?LA=1

What I've been trying to say here in medical terms:
http://www.obgyn.net/cpp/articles/carter_0899.htm

I hope this helps....
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