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Neuralgia llioinguinal Neuralgia llioinguinal

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Unread 06-12-2002, 03:48 AM
Pelvic nerve pain

I found this posting very informative and interesting.
I too have pelvic nerve pain and have had it since Anterior Repair in 1997.(mis-diagnosis) Docors/consultants blame it on the Forceps delivery 17 years ago but I did not have it before Anterior repair op. I understood it to be the Pudendal nerve (I think right sided)but there's no way of really finding out. It is aching now as I'm sitting. I cannot do the pelvic floor exercises using my stomach as this sets of a spasm of nerves in Anus and causes much discomfort. If I bend I ache. Can't sit in bath, kneel on all fours, ride bicycle, swim and lots of other everyday movements. Also have 3 prolapses which doesn't help. (the rectum prolapsed with the op.) And so have to avoid standing and lifting. Although can't lift anyway 'cause of the aching pain and "pulling" feeling in the bowel area. I might be offered a Rectopexy for the prolapsed rectum but there again I might just have to put up with it. Doubt if I could face another op.
I also have Groin pain on my left side but this has greatly improved with Traditional Chines acupuncture over the last 3 years along with general health. I'm going to look up these nerves you mention.
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Unread 06-12-2002, 05:50 AM
Neuralgia Ilioinguinal continued some more

I've been very surprised at the number of responses to this thread. Is there a way these complications could be listed as concerns to those Sisters considering a hyster? I'd like to be able to warn all of them that comlications such as these are real. For me, I've traded one set of problems for another and truly couldn't say which is the lessor of the two evils. On my way to an appointment with an acupuncture physician and the chircopractor.
Let's keep communicating on these matters to share experiences with each other. Just knowing that others have had similiar experiences and that some of mine are "normal" with these diagnosis is comforting yet scary...thanks again for your reply. Keep up the good fight.
Unread 06-12-2002, 08:00 AM
The Lesser of 2 Evils

Deciding to have a hysterectomy is a difficult and lonely decision that each woman comes to terms with at some point in the journey.
It doesn't matter who is by your side or who you talk to, at some point it's a very personal decision.
For me, I am glad I had my hysterectomy as the other options were't all that much fun either and had their own very difficult consequences.
I am a Holistic Practitioner and I got a varied view on the Hysterexperience from the Alternative World just depending on who I talked to.
The large number of the men and some of women who had all their standard issue equipment warned me against the procedure.
All the women who had been down the Hysterville Road
and some with the juncture to the Road Less Traveled encouraged me to be brave and do what I needed to do.
Those were the ones who knew exactly what I was talking about when I said that the insides felt like they were going bad.
It was those women and sisters in the Hysterexerience who sat vigil for me on my surgery day for a surgery that had surprises and ran longer than anyone expected.
I have been very blessed to have the wisdom of a lot of women who made the tough decisions too.
And even then, there were still some things none of them had experienced through which I had to go to the edge of the cliff and look for my own answers.
Yes, retrospect is a difficult thing when nothing you know works and it's totally uncharted personal territory.
All I can say is that for me, personally, it was a right choice even though it has been really hard.
Sometimes the difficulty of a situation does not mark it as a wrong choice. It's just hard.
So, sisters, smile..................As all us good little Alternative Do Bee's know, a smile makes those good endorphins and those good endorphins make healing wellness.
So Lets's smile and be really glad for our moments of clarity and relief when they visit.
P.S. As it turned out one of the things that was not good was the condition of my colon that was fusing with my ovary. It was not something that could be seen on either internal or external sonograms. Had I let it continue on that way I would have eventually lost the use of my colon.
Sometimes having a look see and preventative processes do save us from other real scary stuff.
It's a hard call to make.
But I think it does help to give any and all information to other women so they can make the best of the best informed of decisions for them selves.
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Unread 06-13-2002, 01:31 PM

Here's some info on your condition.

I'm sorry you're facing such a difficult problem, but you are NOT alone.

I've dealt with neurological pain post hyst as well. It has many names, and frankly, sometimes depends on the doc and the type of doc you see as to the name you "get".

Causalgia, Neuralgia (nerve pain), Neuropathy (nerve pain and sometimes used in conjunction with or interchangeable with Causalgia), and Reflexive Sympathetic Dystrophy or RSD are EXTREMELY painful conditions.

I fall under RSD category. There *are* treatments, but alas not any cures.

As for second guessing your decision. That's only natural. I went thru that myself.

As for wanting to warn others about problems such as these...well that's a double edged sword that I had to deal with as well. First, tah/bso, hysterectomy, etc is not always an elective surgery. It can be life saving...and unless people ask me or want to know what the "risks" are, I don't usually volunteer the information even though this surgery brought a whole new level of pain into my life. A whole new set of problems and ended a lot of dreams for me.

What I'm trying to say here is that: Pain is inevitable, but suffering is optional.

I didn't believe that when I first started going to the pain clinic and working out my pain problems. I'm beginning to understand that now.

You need some help with this, and I would advise you to get into a pain clinic that can give you a multidisciplinarian approach. Psychological (no not cuz you're a nut, but because this kind of pain can cause you to go nuts if you don't learn coping skills - diseases like this don't exactly come with a manual!), physical - to handle the pain and there's all kinds of ways to do that - they also need to monitor you to make sure you don't develop other conditions from this new problem, and anesthetically - an anestesiologist to help ease your suffering.

You've got a long hard road, hun. But you can make it. You just have to take it a step at a time.

To give you (and others who may read this thread) some idea of how painful neuropathy, causalgia/rsd can be - here's a link that spells it out quite well:
Unread 06-15-2002, 03:58 PM
Dont try this!!!!

I was misdiagnose with nerve entrapment and after trying acupuncture, physical therapy, pain meds, rest i finally tried a procedure called "cryoneurolysis or croanagesia". The doc go's into the HOT nerve and is suppose to freeze it and thus stopping the nerve signals. Well, I ended up with more nerve damage and am now on a seizure med to control that new pain. I still dont know what the cause of my pain is hth
Unread 06-16-2002, 12:19 PM
Neuralgia llioinguinal

Hi, I am also on Nuerontin. I makes me sleepy and I want off these meds. When anything touches my left groin or pelvic area- I GO THROUGH THE ROOF! I am going to discuss this with pain Dr. after my radiation, it is getting worse. Boy, this thread is getting looong...
Unread 06-16-2002, 06:47 PM
Llioinguinal nerve.....

I have been having pain in my left hip joint ever since my surgery, like arthritic pain, could it be this nerve and what do you do to fix this problem? I kept thinking if I gave it time it would go away, and other times I'd just try to ignore the pain. I just feel like I finally took care of the thing that was giving me so much pain (the cyst and endo) and now I am still complaining of pain, so I haven't mentioned it to the doctor, because I don't want to sound like I'm just looking for something else to complain about. I thought it had to be related to the surgery, but just thought if I mentioned it, it would just be brushed off. But now, I see this on this site and realize, it is real and maybe I should pay more attention to what my body is trying to tell me. Does anyone know of anything to help this problem?

Thanks, Dawn
Unread 06-16-2002, 09:55 PM

hi dawn,
i have had groin pain since my surgery and actually some before my hyst. but now i have developed hip pain. i had an mri done a couple of weeks ago and it showed bursitis in my hip. i am now thinking that the way i have compensated my groin pain in the way i move has caused the bursitis! grrrrrr. i still don't know what is causing the pain in my groin but i do at least know that i have 2 separate issues going on now. i saw on your other post that you are having some "issues" in your lower pelvic area and thought maybe there might be a connection. good luck and let us know what you find out.
Unread 06-17-2002, 05:19 PM
So Many of Us...

I am surprised to see so many of us on the Road with nerve damage problems. I have been dealing with this problem since September 1999 when I had my partial hyst. In July 2001 I had my right ovary removed and while that helped with the pain and numbness down my leg, I still have continued problems with the pain in the right side of my abdomin. I have tried the shots, many of them. Was referred to a pain specialist last month who FINALLY was able to tell me what he thinks this is (nerve damage)instead of saying he didn't know like other doctors have told me. We did more rounds of shots with steriod and lidocaine. That didn't work. I have tried a few different meds...elavil, paxil, vioxx, others too numerous to mention. I was given a lidocaine patch to try, but it doesn't do much for the pain. I now have some neurontin to try, but the only thing I have found to work so far is ultram. I am allowed one per day, and this does not always cut it. The pain specialist mentioned having a general surgeon inject some dye into the area where my nerve damage is and possibly do some repair there. I really hesitate to have any more surgery. I was just hoping for pain relief. My GP mentioned having me sign some kind of pain contract, basically saying I wouldn't abuse the meds. Gheesh!! I just want to have some quality of life. Sorry this is so long. I know you all understand. Thanks for all the information you ladies have posted here. It's good to know we have each other and we can talk when we need to. Bless you all!
Unread 06-18-2002, 06:05 AM
Neuralgia llioinguinal continued

Continuing with alternative treatments for nerve damage in the pelvic region under the supervision of the pain specialist.

The chiropractor has a different take than the pain specialist and while I understand that each specialist has a tendancy to diagnosis accordingly....the chiro doesn't think that it is nerve damage because there is pain !!! and if there was damaged there wouldn't be any pain....he thinks that perhaps with all of the pushing and shoving around in there (hyst and my bladder was adhered to the uterus and it got nicked trying to separate the two) with all of that going on ..that the nerves may have been pushed out and about so-to-speak...may be worth my effort to go so I'm going to give it a trial run of 4-6 weeks...

Also have seen the acupuncture physician who is going to work with the doctor and chiropractor. Her approach is to stablize the body from all the shock and toxic. Have seen her a number of times already - the needles aren't as bad as the pain medication injections but they are still needles that pinch sharp at first especially when directing "hitting" the points...and I've received some bruising (the least of my concerns). There have been a number of times while I'm being treated that THERE IS NO PAIN...
laying down doesn't add to my pain but I usually still feel it ..these small glimpses give me great hope.

I understood from my last appointment with the pain specialist that if there is going to be any recovery that it will be within the first two years of damage and I am approaching the end of the first year.

It is nice not being on the neurontin...though I can tell the difference in the pain. Have just started Elavil. Hoping that with all of the above that I can get some relief.

Hope that this helps someone else on the Road to Recovery.

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