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Neuralgia llioinguinal Neuralgia llioinguinal

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Unread 06-19-2002, 05:14 AM
Neuralgia llioinguinal

I have had both nerves removed and my doc has told me the same thing. The nerve endings are what's causing me continued pain in that area. Some days it's like someone's shocking me with a lightning rod. I keep imagining electrical wires that have been cut and you know how you see on TV they start sparking and stuff. Yikes.
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Unread 06-19-2002, 05:55 AM
Neuralgia llioinguinal continued

Thanks for information and thanks for the hyperlinks.

Appreciate knowing that the burning tingling are nerves being rejuvinated. It is easier to tolerate if you know what is happening and it gives me hope for improvement.

I'll make a point of listing the medications that were used for my blocks/injections on my next post.

Would be interested in learning the results Beachgirls92651
exploritory laproscopy too.

"Shalom" Dear Sisters.
Unread 06-19-2002, 07:35 AM
Ok gals, I can take a little more time today...

I've just been itching to get my comments in here (but alas I've been travelling and connecting with new doctors and new practitioners). So here goes, for what it's worth:

In 1999, I had my hysterectomy. I literally woke up screaming in the recovery room. Nothing would soothe the pain. NOTHING. No dose was high enough until I became unconcious. That's the only thing that would ease the pain. The reason for the hyst tah/bso was that I've battled endometriosis for 20 years. So, I've had my share of pain. I've had a total of 10 surgeries (I think that's right..geesh, it's pretty bad when you can't remember how many) to try and fix the problem (pain from endometriosis).

I, too, had to suffer the comments of "Psychosomatic", "Hypochondriac", "Too sensitive", "drug seeker" and until you're in those very painful shoes, you've no idea how much those labels hurt. They literally hurt because #1, the docs won't look any further to try and help you, and #2 you won't get pain relief, and #3 you're pain will only get worse because the longer pain is left untreated, the more intense and the quicker it will inflame. This has been proven in more than one study.

My doctors tell me this: It's like a river. The signals from the body to the brain. There are bolders in the river that stop the pain signals and prevent them from "overloading the brain" or returning the signals to the body that will inflame the tissue. When you're injured you have accute pain - they wear down the boulders. If the pain is treated, the pain signals should stop and the boulders will reform over time. If the pain is left untreated, or you have a chronic condition like endometriosis that continuously sends screams of pain signals and it isn't treated, then the boulders disappear altogether (think Grand Canyon). Pain has a straight shot to the brain... and the response from the brain is to inflame the tissue, send more blood to the area (or constrict the blood - depending on the pain), and tense the muscles, and send the tissue into a tailspin. Meaning you have no natural defenses against pain anymore. The only way to stop it is to stop the vicious cycle of pain thru various methods. Accupunture, physical therapy, neurological drugs, narcotics, and invasive procedures in some cases (and many more...too many to list here).

Then comes the question of how to do this!?

Well, the good news is, there are many ways of doing this. The bad news is...only 2% of doctors nation wide (US) are properly trained in pain managment (and I can give you all the sources from which I lift my "facts" if you need to double check them it just takes me a while to dig thru the scads of info that I've collected over the years).

This 2% is often overwhelmed. Congress just authorized and completed a study of pain in America. The results were astounding. Suicide rates were up because people simply were not being properly treated for pain. (And at the same time, we have this "war on drugs" thing going on. Well, alas, the quandry.) Pain is considered an "epidemic" and now the 5th vital sign. New rules were created so that if you aren't properly treated for pain in accredited hospitals and clinics, then they can literally lose their accredidation. (I'm not recommending lashing out at the hospitals/clinics, just know your rights).

People desperately need treatment for pain, while at the same time doctors are being investigated for overprescribing medications - in many cases, needlessly (I have scads of information on this too). This puts the doctors in a real bind. They want to treat the patient, but not lose their license to practice and their livelihoods in order to do it.

States have stepped in in a couple of cases. For instance, in KY, you are not allowed by law to see more than one doctor for a pain ailment. Well, if your doc doesn't believe you then you're likely not going to get treated are you?

Pain clinics have begun, slowly, to pop up all over the nation. Some of them are "practicing clinics" meaning they use all types of modalities to treat pain - from invasive to non invasive treatments - and this does include the prescribing of narcotics. In order to comply with the law, and to ensure that their patients do....they DO require patients to sign "Pain Management Agreements". Frankly, I think they're a good thing. It weeds out the 1% that abuse, mistreat (self treat) and get addicted to pain meds.

If you sign the contract, it fully spells out (or should) what your rights are, and what your responsibilities are. Read it carefully before signing. If you have questions, ask until you're comfortable with signing it. I've signed three in the last 3 months.

I also try to make sure that all my doctors are on the "same page". I have them send letters to one another so that one is aware of what the other is doing. This is very important!

I see an accupuncturist (OCMD - American accupunturists are just learning, my ocmd has 37 years of experience), an anesthesiologist (pain doctor who prescribes various medications), a pelvic pain specialist, a neurologist, a cardiologist, and a therapist (mental health professional who deals with strictly pain patients - we DO have special needs), and another pain clinic who is trying to help me with new techniques - things that haven't been tried before and some that are ages old, but they are all aware of what each of them are doing, and yes, I sign contracts at each of the practitioners offices.

I does feel degrading, but it protects you and the practitioner.

You should never have to "beg" for relief. It's degrading, demeaning, and frankly, hurtful (adds insult to injury).

It's also a proven fact, that 99.99% of patients with REAL pain do not get addicted to pain medication. Your pain doctor is there to make sure that doesn't happen, which is why, after they step you up to a certain dose (or at your request) they will switch narcotics or methods of treatment. If you KNOW you have addictive tendancies - tell your doctor. Be upfront with them. Most pain patients tend to UNDER treat (meaning they won't take the prescribed dosage for fear of "addiction") - thru my years, and unfortunate circumstances, I've learned that this is the worst thing you can do for yourself. It doesn't break the pain cycle. Listen to your doctors (pain specialists) and follow their directions to the letter - never take more or less than they tell you to.

It is also a proven fact that if you don't treat pain, pain gets worse, and harder to manage. It is an all over body disease with all over body repercussions. Look at my case: every organ in my body is affected by this pain disease. I have to worry about osteoporosis, liver damage, kidney damage, stroke, high blood pressure, adhesions, nerve damage, incontinence, and scads of other things.....but I digress....

In my case, there's a neuroma at the top of the vaginal cuff, and I developed something called RSD because of it. RSD can literally kill me if it's not treated. For instance, I had a stroke last year, because of RSD.

More information on RSD

If treated properly, RSD can go into remission. Pain works in much the same way....if untreated or under treated, it can get worse and cause other problems (like high blood pressure, etc).

So, it's up to the individual as to how they handle the pain, but I strongly suggest that you find a "team" of doctors to help you through this. You're going to need it if you have nerve damage.

If your current physician isn't treating your pain adequately, have a polite and frank discussion about your symptoms. let it all out. don't put on your brave face...they need to know how this is affecting your life.

If they can't or won't treat you, ask to be referred to a pain clinic.

One more thing...ob/gyn's are NOT trained in pain managment, so don't expect much there after the 6-8 week healing period has passed. Try not to feel abandoned after they "drop" you or accuse you of being a "drug seeker"...that's what they're taught in medical school. They don't know any better. It hurt me...that's fer sure, but don't doubt yourself, or your own body. Pain is a signal that something is very wrong, don't ignore it, don't assume you are "making it up in your head". You're wasting precious time if you take this all personally and start doubting yourself (I know, because I was guilty of this).

Get yourself to a neurologist and/or a pain clinic quickly. The quicker it's treated, the better the prognosis for future pain control and full remission.

You need an accurate diagnosis, which is VERY hard to get, but the pain clinics can help with that too. They won't just dole out drugs without knowing what's wrong with you. That, too, is part of their job...finding out what's wrong.

The last piece of advice that I can give you is this: Don't give up your power!

If procedures are suggested, research it, ask for 2nd opinions - and don't trust everything on the 'net - look for reputable sources on the 'net. It's YOUR body. You must live in it for the remainder of your days. It's up to YOU to decide what needs to be done. As Twy says, "Do what's right for YOU". And trust your instincts. No matter how off base they may seem. They won't steer you wrong.

The body is the temple of the soul. Don't let it become your cage.

There is hope out there my sisters. It's so hard to see, but there's two things in life that's a given: death and pain.

Pain is mandatory, suffering is optional.

Luv to you all,
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Unread 06-19-2002, 07:47 AM

All that bologna about, "You are the master of your reality" is very easy to say when you're not the one in pain!

I remember going to physical therapy and having am 18 year old girl (no pain) telling me, "Imagine the pain is a bird. The bird is flying away..." Minutes pass...."Is the pain gone?"

I said, "No, I'm Tippy Hendren in an Alfred Hitchcock movie lady....the birds are tearing me apart".

Easy to laugh now...not so easy at the a matter of fact, I remember breaking down and crying very vividly....
Unread 06-19-2002, 07:51 AM
More direct answer...

One pain med a day is not adequate pain relief if you are not getting 24/7 relief. I don't think it's realistic for the pain to ever be 100% gone, but in my case, my pain went from a 10 to a 4-6 and that's where it stays. Meaning, I can live my life. Keep my life...and one measly little pain pill will NOT control my pain.

I don't think that's reasonable. JMHO.

Have you considered asking the doc to refer you to a REAL pain clinic? You have the right to change yourself, just inform the latter that you don't intend to see them again once you have a relationship established wiht a new pain clinic...

Here's a way to find one:How to find Quality Health Care
Is your Health Care Organization Accredited?


Hidden Disabilities and Resources
Pain Thread with Article links re: Pain the Disease
Looking Good Feeling Rotten - Hidden Disabilities

How to talk to the doc/questions to ask

Dr.Cook Endo after hyst
Gender Human Rights

Nerve Damage

Benefits of anti depressants

Benefits of Supplements

"We must all die. But that I can save a person from days of torture, that is what I feel is my great and ever-new privilege. Pain is a more terrible lord of mankind than even death itself." -Albert Schweitzer, 1953
Chronic Pain Sites

Pain Relief Promotion Act
Pain Treatment
Pain Expl...
Oste Pain
A Chance to be Heard -Vandy Talk
Here's my symtoms after surgery (for those who're interested). Immediately after surgery I had the following symtoms that have waned, waxed, and some that stayed consistent:

bone pain (felt like someone was hitting my bones with a hammer and I was afraid it was bone cancer or something)
Hip pain (same as bone pain only worse)
Tingling sensations all over my body
Uncontrollable jerking
Excruciating pelvic pain in the soft tissue
bladder incontinence
bladder pain
dry skin
sexual dysfunction
weight gain (more than 20lbs)
weight loss (more than 20lbs)
painful skin (on my abdomen)
fainting spells
SEVERE depression
blood in urine
chronic kidney infections
cold spells
hot flashes
mood swings
trouble sleeping (not at all or all the time)
vision problems (blurred vision)
My right leg and my bladder were not use-able at all for many months I later found it it was probably due to crushing the femoral nerve during surgery
fatigue (chronic)
no sexual drive
receding gums
bleeding gums
loose teeth
nose bleeds
(and others I know I forgot to mention)

Just a bit of advice:

First, find someone to help you deal with the pain and depressiona and hopelessness NOW. Don't give up on finding answers, but you do need relief. If you don't get help you're going to start a cycle of pain that will be hard to break.

Second, write down ALL your symptoms before you see the physician and present it to him/her. Then ask what they plan to do.

Third, if you're on hrt - what kind? Sometims a change in hrt CAN make a difference. I know how trivial this sounds, but it helped me in some areas.

Fourth, antidepressants help you stay out of the pit of hopelessness and they DO help pain if you find the right one for YOU. Will they ease all of it but some of it...and right now we're looking for the "one percenters" where if this helps one percent and that helps one percent then eventually you'll be 60% better!

Fifth: Check out -- I know this sounds trivial as well, but this also helped me a great deal! After tah/bso your body does not digest food the same way. Vitamin B6 and B12 definciencies can cause tingling in the extremeties and some tremors and uncontrollable jerking (if it's bad enough). A lack of calcium and magnesium can cause bone pain...and the list goes on.

Sixth: Testosterone helps energy levels -- get some NATURAL testosterone from a compounding pharmacy and a doctor to work with you on it.

Seventh: If exercise does NOT make your pain worse, do it. Your body releases natural endorphins that will help control the pain and ease the joint/body aches.

Eight: Some herbs will help along with accupunture if you have access to a good OCMD. I take several chinese herbs along with accupunture and it's been my saving grace. (Yes, I used to think this was malarky as well until I was proven wrong).

Ninth: and most importantly DO NOT GIVE UP and when visiting the doc break down and cry if it gets the point across. Try to be calm and helpful, but show that emotional side.

I hope this helps, huns. I've been where you all are. We all have...and that's worse than unfortunate.

I balked at these things for months and finally our resident hrt guru "trish" bonked me on the head and said, "Look kid, I've been there. Just try it before you knock it." I did, and I'm forever in her debt. Then Hystersis Sheri suggested pain mgt (it saved my life). All of these people and different approaches made it bearable. Do I want a cure? SURE! But they're not handing those out very rapidly, so I needed perserverance and a good strong dose of strength and relief before I could trudge onward. Know what I mean?

If you all want to talk or need help...please give me a shout. Email me and we can discuss any of these things further. Like I said, I don't have answers...but I have the one percenters that kept me from jumping off the cumberland bridge.

PS...for a litte inspiration, check out the new song by Bonnie Raitt, "Valley of Pain". It's so right on....

Luv you all..

PSS, sorry for the long winded posts...and I don't want anyone to think I'm anti-doctor or's just that some times you have to reach down and find that strength you didn't know you possessed in order to make it thru this.

I've been thru some horrible things in my life, and this pain thing is by far one of the worst. I just want you all to know there's not only hope, but real help.
Unread 06-19-2002, 08:46 AM
llioinguinal Neuralgia continued

Thanks so much for taking the time to share your experiences with us. The information that you provided was great. Am checking out the hyperlinks too and will go back to check out the horomonal jungle too. Thanks again.
Unread 06-19-2002, 10:08 AM
Chronic Pain

Thanks for posting such great links for information and help.
It becomes ones world to do endless research when chronic
"anything" is a factor that consumes ones thinking and sleeping

I don't find waking up and literally seeing RED because pain had gone nuts in the night to be a pleasant experience.

It is a wonderful day when we finally find an understanding doctor.
For me that has been my Family Practitioner( who is new on my medical scene)
For a while we talked about a Pain Clinic but then she agreed to
try a little "compromise therapy" and so far so good.
For me it is a delicate daily balance much like tending my
Irritable Bowel.
I too have High Blood Pressure.
My BP is difficult to control requiring 2 different types of BP meds.
My pain has been a long time issue even before the hysterectomy.
An accident brought me to live with chronic pain long before the addition of hysterectomy complications.

An SSRI and Elavil are currently working well( yes it feels like a miracle) and I am also able to have my "evil drugs" on hand if I need them.
My body tends to spasm so for me antispasmodics are my key to well being.
I try not to take narcotics because I have allergic trouble.
However, I can and do take other "suspicious" medications that
turn out to be in question. Narcotics are just the most widely known but there are plenty other things that doctors don't like equally as much.
I try real hard to work a balance as being without the few things that really work for me is scary since my body doesn't do well with too many medications.
The last couple of weeks have been good.
I was maintaining on some minimal doses. But then, I did too much physical stuff and once again trouble started. So I'm back to a couple of nights of more medication to get things set right again. It's a compromise and shift adjustment. A continual science project.
If I have 5 or 6 good days in a row and I consider that a miracle.
I recently celebrated 2 weeks without a migraine! (before the spasm kicked in) For me that was was like climbing a mountain and getting to see the world!

I totally agree that when in pain one should be vocal and let your practitioners know how bad you hurt.
I was real vocal recently after being ignored and told to handle my ouchy bowel problems with an enema at home.
I raised a huge fuss and went to the E.R.
...........After The Emergency Surgery..................the surgeon told my husband that they usually do a bowel resection on the type of trauma that was going on in my bowel. I was lucky by matter of quick timing and my bowels are still in one piece.

Hang in there when the ride is rough and Celebrate Celebrate
Celebrate when the pain monster takes a vacation if even for only a short while.
11 weeks hyster post op
Unread 06-19-2002, 11:50 AM
Chronic Pain

I must ladies rock!! Thank you very much for sharing so much information and for answering so many of my questions. Yes, I too find myself in that cycle of a good day here and there and managing it all can become so tiresome, but it is necessary. After dealing with this pain since 09/99, trying some alternative methods and then loosing my right ovary last 07/01, I basically went into my shell, and figured this is how it's going to be. Then last month I decided to do something about it and get the ball rolling again. Ob-gyn's can only do so much and now I understand that. I do find that exercise works, as does massage, chiro and resting with heat. I will go back to my GP and not try to be so brave and 'chin-up' about it anymore. They can send a man to the moon and clone animals, yet we still suffer. What's up with that? Anyway, thanks for the posts, I feel inspired now and I will save this thread and read it before my next doctor's appointment to help me be more vocal.

Take Care,
Unread 06-19-2002, 11:53 AM
Neuralgia llioinguinal

You go girl!!

let us know how the next appt goes!!!
Unread 06-19-2002, 03:17 PM
Neuralgia llioinguinal

Wow! Thanks Angie! Guess I've got some reading to do. The removal of my damaged nerves hasn't taken care of the problem.

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