Questions about endometriosis (new research)

Discussion in 'Fibromyalgia Main Forum' started by roro, Oct 3, 2002.

  1. roro

    roro New Member

    I was reading up on the posts about endometriosis causing this DD. I looked up some stuff on it, and I have all the symptoms of endometriosis. I also read there is no test to tell if you have it, that the only way to tell is from surgery. that seems kind of drastic! Is there any other way they can tell? I have a lot of abdominal pain, bowel and bladder problems, excessive abdominal fluid retention with my period. It worries me that this may be eating away at my intestines and bladder. What happens when left untreated? I had an ultrsound done and the dr said the thickness of the whatever-its-called in my uterus was normal, and so I didnt have endometriosis, but from what I am reading that is incorrect.
  2. roro

    roro New Member

    I was reading up on the posts about endometriosis causing this DD. I looked up some stuff on it, and I have all the symptoms of endometriosis. I also read there is no test to tell if you have it, that the only way to tell is from surgery. that seems kind of drastic! Is there any other way they can tell? I have a lot of abdominal pain, bowel and bladder problems, excessive abdominal fluid retention with my period. It worries me that this may be eating away at my intestines and bladder. What happens when left untreated? I had an ultrsound done and the dr said the thickness of the whatever-its-called in my uterus was normal, and so I didnt have endometriosis, but from what I am reading that is incorrect.
  3. roro

    roro New Member

  4. ohmyaching

    ohmyaching New Member

    You may want to consider joining the Endometriosis Assoc.. They offer a lot of information on endo. The CFIDS chronicle has published reports that have found the incidence of endometriosis in women with CFIDS (just another name for CFS) to be greater than what would normally be found in the general public. The Endometriosis Assoc. has developed a three part program for treating endometriosis as an autoimmune disease. Many who have used it claim to find relief. I wonder if it wouldn't be in the best interests of those with CFS to use this program regularly. Not only is this treatment similar to treatments said to be beneficial for relieving CFS/FM, but perhaps this treatment might also help to prevent endometriosis. This seems like it would be a good thing concidering that endometriosis is more prevelant in women with CFS and so they would be more likely to develop it.
    Below is a copy of a post I made on this board concerning endometriosis:
    I forget who I've talked to so if this sounds familiar that is probaby why, but I tell everybody about the work being done with immune disease by the Endometriosis Assoc..
    The Endometriosis Association believes that endometriosis is an immune disease. As a matter of fact I have early research for CFS that lists endometriosis as a symptom. Why CFS organizations no longer list endometriosis as a symptom is a good question. The CFIDS Chronicle, published by the CFIDS Assoc. has printed reports stating that people with CFS have a greater incidence of endometriosis than that found in the general public. I've been through endstage endometriosis. I was a member of the Endometriosis Association and during that time they changed their whole outlook toward endometriosis focusing more on the area of immune disease.
    The Endometriosis Assoc. has developed a program for treating endometriosis as an autoimmune disease which involves the following:
    1.Treat for allergies-desensitization to allergens.
    2.Treat for candida
    3.Treat hormone imbalance
    If you are interested in obtaining information on this treatment then I recommend you get a copy of the Endometriosis Association’s Newsletter vol.17, nos. 2and 3, 1996. It is a two part series entitled "Endometriosis and Candida Albicans: Even More Startling Connections."
    I have these articles and I highly recommend them. Much of the treatment they recommend is also suggested treatment for CFS and FM. These are treatments that have been used with success by many members of the Endometriosis Assoc.. I don't think the program is a permanent cure so that you can stop following the program, but it works as long as you continue to follow it. It seems to stop the disease from progressing, perhaps the program might even be helpful in preventing endometriosis. Unless you are a member of the Endometriosis Assoc. you cannot access this information on their website, but you can purchase these newsletters from there.
    P.S. Ten years before my hysterectomy my gynocologist mentioned that it looked like I might have "some endometriosis". He didn't seem concerned about it so therefore I wasn't concerned either. I believe the actual diagnosis was made from a D&C I had done.



  5. tandy

    tandy New Member

    I'm 39 yrs old and was DX with endo about 5 yrs ago.I have since had 3 more laproscopys....and of coarse the one to first Dx me,so 4 so far.Prior to that.... I had so many pelvic ultrasounds done b/c of what I believed was bad PMS,severe cramping,bowel changes,even blood in my urine.The ultrasounds never picked anything up!!!I was basically told its the womaen thing,get used to it!!Well i finally got a new Gyno that said She was so sure of herself in that she believed all my pain was endo.I was hesitant on going thru the surgery b/c your right...that is a pretty drastic move just to take a look!!!
    The surgery is not that bad at all.The last one I had was just this past August and I had it done at 7am and got discharged at noon!!!With a inch insision~piece of cake!!!
    I guess I'm getting good at those laps!!
    I had all your symptoms and.... alot of pain with ovulation too!!(real bad!in bed for days with a heating pad!)Heavy periods,even ran a temp with my periods.Its a very painful condition!!!
    In severe cases,it can cause obstruction,which would be an emergency operation.
    Good luck at whatever you decide to do.
    Warm regards,
    Tracey
  6. roro

    roro New Member

    Oh, that doesnt sound so bad. I guess its not as bad as it was years ago before laproscopy. I have a lot of pain too, and even run a fever. I am going to talk to my doctor about it.
    So what did they do for it? Did they remove all of it?
  7. tandy

    tandy New Member

    but......mine keeps recurring~I've had as much removed as possible each time.Which the last one(as i said in August this yr)I had some new growths of the endo on my colon and across a ureter,which my dr would'nt even touch,due to damage to those organs is to risky.I'm 39 so Im somewhat hoping for an early menopause b/c then alot of the endo shrinks and die.(I hope!)Many women opt for the hysterectomy.....I've had that one suggested a couple times, but so far I'm bound and determined to hold onto my organs.
    I'll be happy to answer any other questions you might have~
    Have a great evening!
    Tracey

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