Yikes, me too....

Discussion in 'Fibromyalgia Main Forum' started by 2BPainfree, Dec 15, 2002.

  1. 2BPainfree

    2BPainfree New Member

    I think by far, the worst pain I have experianced is the bladder and abd pain. Yes, the fibro "suxs" Yes, the chronic fatigue is horrid, but Bladder and pelvic pain can be indiscribable....like being burnt with cigareetes from the inside!!

    I have been through it all....
    Although my IC finally calmed down (the only releif I used to be able to get was jumping in a HOT bath, ususally multiple times a day or at 3AM!) Also I foiund Goldenseal root (herb) really helped...think it took the inflammation down. NOw they have newer drugs like Elemrion..as someone else mentioned.

    What I am wondering...if you have severe scar tissue, have you had multiple abd surgeries before?? If not, did the Doc explain W-H-Y you have so much scar tissue??? It sounds to me like endometriosis, not just in your uterous lining but in the abd cavity! That could explain all the scar tissue all over sticking everything togther!! (Just my assumption)

    I am the "Queen" of endo (just kidding) But seriously I have very severe endo and have been S-L-O-W-L-Y picked apart pc by pc. (gutted like a fish by 15 yr old says, LOL!)
    Endo does very srange things and presents it's ugly head in many ways....some Docs are not trained well enough to see it.
    It surprises me you have so many adhsions...unless you've had lot's of abd surgeries the only other explaination for everthing sticking together is chronic inflammation and bleeding which developes the adhesions (endometriosis is usually the culprit!) I find when my endo kicks up...so does my bladder, so does the yeast problems (even get little fissues/cuts from the yeast, without the discharge*sorry guys*) But alot of people don't recognize red, swollen "area" with little tiny "cuts" or abrasions as being yeast but it is.

    My BEST advice to you is find a SPECIALIST who sees interstitial-cystitis patients and a seperate SPECIALIST who deals with Endometriosis patients. ASK around for a specialist who sees these problems OFTEN-BEFORE you let anyone do surgery on you. I have had 5 surgeries and am still having problems. That's not the norm, but not uncommon either, in the endo world. It all goes back to the autoimmune problems we have. One thing affects the next. Be careful!

    Also....in someones comment to their daughter having a baby and a catheter....I doubt it was the catheter that made things better but "Having the baby!!" This is classic of endo symptoms to get better after having a baby! (R/T change in hormones)

    I have prepared many patients for general aesthsia who were just having a "dilitation" for symptoms of bladder irritation. To me it seems like a futile attempt.... like spitting on a fire. (when your bladder spasms you can hold onto urine and not empty it, this doesn't always mean your urethra is too small) This is not to say that you don't have a small urethera and it's not the problem, I just don't beleive stretching the urethra solves everything, especially in our situations. The culprit more often than not is the IC (interstitial cystitis) and only someone trained in dealing with that can help (Not all urologists specialize or even know how to treat IC correctly)

    I also think Endometriosis should be evaluated as a possibility as well...again by someone who deals with it often (you can waste alot of time with Docs who know what it is, but don't have much experiance with treating it)

    Sorry this is so long, BUT this is the monkey I deal with EVERYDAY...so I'm a bit sensitive to it. It drives me crazy when I see Docs who don't know what they are doing and say the wrong things. A good book to take a look at is the "Endometriosis sourcebook" By the National endometriosis foundation....Marlou Ballweg wrote it. (You can buy it anywhere) It covers endo, interstital cystitis, yeast problems, bowel problems ect. your jaw will just drop when you read it!!

    I hope you feel better soon!

    Susan B


  2. 2BPainfree

    2BPainfree New Member

    I think by far, the worst pain I have experianced is the bladder and abd pain. Yes, the fibro "suxs" Yes, the chronic fatigue is horrid, but Bladder and pelvic pain can be indiscribable....like being burnt with cigareetes from the inside!!

    I have been through it all....
    Although my IC finally calmed down (the only releif I used to be able to get was jumping in a HOT bath, ususally multiple times a day or at 3AM!) Also I foiund Goldenseal root (herb) really helped...think it took the inflammation down. NOw they have newer drugs like Elemrion..as someone else mentioned.

    What I am wondering...if you have severe scar tissue, have you had multiple abd surgeries before?? If not, did the Doc explain W-H-Y you have so much scar tissue??? It sounds to me like endometriosis, not just in your uterous lining but in the abd cavity! That could explain all the scar tissue all over sticking everything togther!! (Just my assumption)

    I am the "Queen" of endo (just kidding) But seriously I have very severe endo and have been S-L-O-W-L-Y picked apart pc by pc. (gutted like a fish by 15 yr old says, LOL!)
    Endo does very srange things and presents it's ugly head in many ways....some Docs are not trained well enough to see it.
    It surprises me you have so many adhsions...unless you've had lot's of abd surgeries the only other explaination for everthing sticking together is chronic inflammation and bleeding which developes the adhesions (endometriosis is usually the culprit!) I find when my endo kicks up...so does my bladder, so does the yeast problems (even get little fissues/cuts from the yeast, without the discharge*sorry guys*) But alot of people don't recognize red, swollen "area" with little tiny "cuts" or abrasions as being yeast but it is.

    My BEST advice to you is find a SPECIALIST who sees interstitial-cystitis patients and a seperate SPECIALIST who deals with Endometriosis patients. ASK around for a specialist who sees these problems OFTEN-BEFORE you let anyone do surgery on you. I have had 5 surgeries and am still having problems. That's not the norm, but not uncommon either, in the endo world. It all goes back to the autoimmune problems we have. One thing affects the next. Be careful!

    Also....in someones comment to their daughter having a baby and a catheter....I doubt it was the catheter that made things better but "Having the baby!!" This is classic of endo symptoms to get better after having a baby! (R/T change in hormones)

    I have prepared many patients for general aesthsia who were just having a "dilitation" for symptoms of bladder irritation. To me it seems like a futile attempt.... like spitting on a fire. (when your bladder spasms you can hold onto urine and not empty it, this doesn't always mean your urethra is too small) This is not to say that you don't have a small urethera and it's not the problem, I just don't beleive stretching the urethra solves everything, especially in our situations. The culprit more often than not is the IC (interstitial cystitis) and only someone trained in dealing with that can help (Not all urologists specialize or even know how to treat IC correctly)

    I also think Endometriosis should be evaluated as a possibility as well...again by someone who deals with it often (you can waste alot of time with Docs who know what it is, but don't have much experiance with treating it)

    Sorry this is so long, BUT this is the monkey I deal with EVERYDAY...so I'm a bit sensitive to it. It drives me crazy when I see Docs who don't know what they are doing and say the wrong things. A good book to take a look at is the "Endometriosis sourcebook" By the National endometriosis foundation....Marlou Ballweg wrote it. (You can buy it anywhere) It covers endo, interstital cystitis, yeast problems, bowel problems ect. your jaw will just drop when you read it!!

    I hope you feel better soon!

    Susan B


  3. Mikie

    Mikie Moderator

    My daughter with IC has been told that taking baths, as soothing as they are, can make the IC worse. I do know that people with chronic bladder infections are told to take showers.

    This is one of the cruelest symptoms of FMS, along with vulvadynia. Both can be so very painful. I know my daughter is doing much better. I'll ask her what she is doing and try to get it posted. Hopefully, it will help others. She finally found a doc in Atlanta who is familiar with these symptoms.

    Love, Mikie