Conference turris::womannotes-v1

    Dr. Tim Johnson just did a segment on Good Morning America about
    this.  I'll tell you what little I remember.
    
    Endometriosis is an affliction where pockets of tissue attach 
    themselves to the inner lining of the uterus, the endometrion (sp?).
    These pockets of tissue can also be found in the Fallopian tubes.
    
    The 'flare ups' usually occur during menstruation and are extremely
    painful.  
    
    Yes, it is known to be a precursor to certain types of cancer -
    I am not sure of the exact medical reason for this.
    
    There is *one* drug that has been shown to be effective with the
    symptoms (and also the only FDA approved drug), the name of which
    I do not remember, but you wife's OB/GYN should know.  I do remember
    that there were several side affects.  
    
    I know this is sketchy, but it is all I can really remember.
    
    Best of luck,
    Dorothy

    Peter, 

    You and your wife have my symapthy.  It's not an easy disease
    to cope with.
        
    What follows is a laywoman's summary of my understanding of what I
    probably have.  (My symptoms are very mild and the doctor's
    diagnosis is only about 85% certain.)  Some of our noters are
    well-versed in the sciences will no doubt elaborate and correct me
    later: 
    
    Basically, endometriosis is a condition in which cells from the
    lining of a woman's uterine lining enter her abdominal cavity.
    These cells still respond to the hormonal cycle, swell to be ready
    to receive a fertilized egg, and cast off their nutrients, etc.
    when pregancy doesn't occur. 
    
    These lumps of cells can vary in size, and the degree of problem
    depends on the size.  If they're large, they cause pain when
    they swell and press on other organs, and they cause pain when
    they try to menstruate and have no place to get rid of the
    blood and fluids they've been storing.

    I never bothered to ask how the cells get out of your uterus
    and into the abdominal cavity in the first place . . . oversight
    on my part.
    
    One way endometriosis causes infertility is when the lumps of
    cells block the Fallopian tubes from the outside.  (A friend of
    mine had this problem.)  I don't know if there are other ways. I
    know it took me longer to conceive than I expected -- over a year
    -- but my gynecologist says that's normal even for healthy women. 
    
    Pregnancy, if you can conceive, slows down the disease or even
    causes it to regress.  The hormones released during pregnancy
    cause the maverick cells to shrink, and sometimes it takes
    years before they become active again.
    
    There are several drug-based treatments, but many of them have
    serious side effects, so unless symptoms are severe, some doctors
    prefer not to treat them.  Your doctor should, however, explain
    what those treatments are and what the tradeoffs are to your
    wife and let her make the decision.  It's her pain and her
    body!
    
    In my case, all I have is some cramping and occasional heavy
    periods.  I don't have any of the emotional symptoms that
    sometimes accompany the disease, and I don't like drugs.  So
    I'm just keeping an eye on mine.  (It does tend to get worse.)

    In severe cases, surgery is in order.  By performing a
    hysterectomy to remove the source of the hormones, one reduces
    the symptoms considerably.  I have read that it doesn't do
    any good to surgically remove the lumps of endometrial cells
    because you never get them all and just grow new lumps.  However,
    that article was not in a real reliable magazine.

    My gynecologist denies that there is a connection between
    endometriosis and cancer.  He (sorry, I do go to a male gyn and
    have been VERY pleased by his understanding, sympathy, and
    helpfulness) says that the study that claims to have found a link
    is completely invalid because it didn't adequately control known
    variables linked to reproductive cancers.  But this was two
    years ago and there might have been new studies since then.

    I hope this gives you the basis for asking your wife's doctor
    a LOT of questions.  And if he/she won't answer them to your
    satisfaction, find a new doctor.  There's a tendency on the
    part of a lot of doctors to be unsympathetic to female problems,
    and if your wife's doctor has problems in this area, now is
    when you're going to find it!
    
    If you or your wife would like to talk to me off line, feel
    free to send me mail.  
    
    --bonnie

    The lining of the uterus is the endometrium. For some reason
    in this disease the endometrium will travel and attach itself to
    other parts of the internal system-usually the tubes and ovaries
    but it can attach to the colon also. The endometrium is
    a mucous membrane.
    
    It can be very painful as these pockets will respond to the
    cycle just as the uterus does.
    
    Get a good doctor who specializes in this. There are several
    treatments depending upon age of the patient,desire to have more
    children etc.
    
    If you have any further questions I would be happy to talk to
    you or your wife.
    

    The endometrium migrates into the abdominal cavity through the
    Fallopian tubes which open into the cavity.

    My doctor told me that I have endometriosis about 8 years ago. 
    He said that unless I was in excrutiating pain or wanted to have
    another baby that it was basically no problem.  (I hope he was right.
     He's never said anything about cancer.)  Since I don't have any
    unusual pain, and don't want any more kids I've never considered
    it a problem.  Obviously, it affects different people differently.
    
    Lorna
     

    I was diagnosed as having endometriosis about 10 years ago based
    on several pretty broad-ranged symptons, but had not problems
    conceiving at the ripe old age of 33.  My sister-in-law has been
    recently diapnosed via laporoscopy (SP) has having very bad
    endometriosis and the diagnosis was Diazol for 9 months.  Side effects
    are plentiful - weight gain, facial hair growth etc.  Interesting
    side note as other "noters" have mentioned - pregnancy is considered
    a cure for this condition as it shrinks the superfluous cells. 
    Because women are waiting so long to have babies, many having their
    first in their 30's, the body is subjected to many menstrual periods
    and the hormonal changes that cause periods.  Pregnancy is really
    a rest for those hormones. There seems to be a correlation between
    women having babies later in life and the rise in the diagnosis
    of endometriosis.  
    
    
    
    

    I'm puzzled as to why a hysterectomy would help.  A friend of mine
    had one several years before I met her, and I have the dim recollection
    that she told me (1) it was because of endometriosis, and (2) she
    didn't have to take hormone suppliments because she still had (one?
    or both?) ovaries.  The reason I'm puzzled is that the uterus doesn't
    produce hormones, does it?  The ovaries do (and maybe the pituitary
    or something, I'm getting a bit fuzzy here).  Anybody know?  Maybe
    removing the uterus stops any further shedding of endometrial
    tissue....
    

    re: .7
    
    I have to agree, Karen -- I don't understand how it helps,
    but I know two women who have had hysterectomies for
    endometriosis, and both have been helped immensely.  Perhaps
    the uterus does produce hormones???
    
    --bonnie
    

    Karen,
    
    Your guess is correct. Once the excess edometrium is surgically
    removed, the hysterectomy prevents any further shedding. The ovaries
    and pituitary do indeed produce the major sex hormones (although
    the uterus does produce some hormones as well.)

    
    Bonnie

Re  .6 


>    endometriosis and the diagnosis was Diazol for 9 months.  Side effects
>    are plentiful - weight gain, facial hair growth etc.  Interesting



Odd that bit about 'facial hair', my wifes started on Danol (which 
sounds very like your Diazol in effects etc) and the doctor said
that at the first sign of facial hair she's off Danol PDQ


Different doctors, different ideas ?

Peb

    Maybe a little info from my experience may be helpful....
    
    I was diagnosed having endrometriosis almost seven years ago by
    ob/gyn at the time.  After he gave me the run down of all the awful
    things that could and would happen, I decided to get a second opinion.
    
    The second opinion wasn't much better, and even went further to
    say that he strongly recommended a partial hystorectomy instead
    of trying to remove some of it.  Guess what, I decided to go for
    a third opinion.
    
    Third opinion suggest that I check into daysurgery and he would
    do a laporoscomy.  He was also the type of doctor that took time
    and answered ALL my questions and gave be alot of background into
    the recent research that was being done.  After leaving his office
    I called a few of those female clinics in Boston and asked them
    for all the pamplets sent to me that they had.
    
    After alot of hemming and hawing, I decided to go with the third
    opinion, that no diagnosis of endrometrious is solid until they
    did the laporoscomy.  So I checked into daysurgery.  When I woke
    up, the doctor informed me that I was at a very early stage, which
    he scraped off and put me on birth control pills for.  And to this 
    date have never developed any further problems or signs of it. 
    The other pain was not due to this disease but was actually cysts 
    that had grown to a very large size, that he removed while I was 
    still under.
    
    So I can only tell you that from everyone I talked with, they all
    felt that the patient should get many opinions and then go with
    the one that they feel the most comfortale with. But no one felt
    it could be correctly diagnosed with our the laporoscopy.
    
    Good luck.
    

    RE: .12
    
    It seems too often that the options doctors give for "female" problems
    is to "remove the female anatomy", "remove part of the female anatomy",
    or "remove the whole female anatomy".
    
    Good for you for getting a second and third opinion until you found
    a better option.                     
    
    

    
    For some reason my reply .11 never went in??????????  The title
    is there but no note.
    
    Anyway, basically what it said was that because of EXTREME pain,
    I decided to go ahead and have a "partial" hysterectomy where they
    just removed the uterus.  It was one of the smartest moves I ever
    made.  I haven't felt this good in a looooooong time.  But...my
    sister has endometriosis also and has very little pain with it.
    Because she has so little pain, she decided not to have surgery
    done.  I agree, you should get several opinions.  Surgery was the
    best thing for me but isn't always right for everyone.
    
    I'm fairly new to notes.  Any idea where .11 went to?
    
    Peace,
    
    Marie
    
    

    re: .14 and .11 -- I've been noting for months and still lose things
    like that sometimes.  You see, there's this huge computer sitting
    somewhere in the middle of the network, and when it sees something
    especially interesting or well-written coming through, it swallows
    it and keeps it to put in the novel it's writing.  In a few months
    we'll see all our missing notes and mail messages there on the New
    York Times best-seller list, by Yoda Colon Colon Via, or some such
    name . . .
    
    re: .12 
    
    You're absolutely right, until you have the laporoscopy, or however
    you spell it, the diagnosis of endometriosis is tentative.  That's
    why I said my diagnosis is only about 90% positive.  I have so few
    symptoms that the laporoscopy itself is more danger than the disease.
    
    And congratulations to you for pushing until you got a satisfactory
    medical answer.  I'm glad that I was able to get the information I
    needed at one stop, so to speak . . . 
    
    Re: the base note:  You might try contacting the health services
    office in your building.  They have a lot of pamphlets and so on
    about endometriosis.  (The rack in ZK health services had six pamphlets
    or flyers by my quick count.)
    
    --bonnie

    Recently I read an article about a new laser technique for treating
    endometriosis. It involved running a laser just above the surface
    rather than actually touching the surface. The results were apparently
    quite good. I think it was in the Boston Globe Science section on
    Monday...does anyone still have a copy who can check it out?
    
    Bonnie Jeanne

Re .15  

>    You're absolutely right, until you have the laporoscopy, or however

Well is because of the laporoscopy (sp) (actually I can't even SAY it
never mind spell it) that we found out that anything was wrong
(perhaps more pain each month than 'normal' (but then what do I know)).
Like I said -a_few my wife's now on a large dose of Danol ,for
six months, and then we will see !

Thanks all


Peb

    Is a laporoscopy uncomfortable or painful when it is performed?

    re: .17
    
    I don't mean to either criticize what you're doing or comment on
    the degree of pain your wife is feeling -- some people feel any
    pain is too much, and I can't argue -- but I'm concerned that with
    so few symptoms, your doctor is treating her with such a strong
    drug with so many side effects. 
    
    Doctors (of all ages and genders) have a tendency to think that
    once they know you have a condition, they have to treat it, no
    matter how little trouble it's giving you.  They're seldom
    willing to let well enough alone.
    
    Not being a doctor, I wouldn't presume to say that this is a case
    that should be let alone.  But endometriosis is a condition that's
    notorious for being over-treated (cut out the uterus, that's the
    source of all the world's problems), and a little caution might be
    in order.  Have you considered getting a second opinion about the
    treatment? As far as I know, John Hancock is glad to pay for them. 

    --bonnie

    I have always had severe periods. I thought It was normal until
    I started having pain...cramps and severe fatigue even when I didn't
    have my period. I was seeing a Dr. from Groton Ma at the time. He
    kept telling me that I had severe PMS...and that alot of is he felt
    was in my head. Another problem I had with him was he was never
    there when I made an appointment...it seemed as though I was always
    being seen by a nurse practitioner. Finally after nine months I
    decided to go see another Doctor. Before I was seen by the new
    Doctor I ended up in the emergency room because I was in so much
    pain I couldn't walk. They thought I had appendicitis. After a 
    complete examination they sent me to Dr. Chei at Leominster Hospital.
    The following monday he did a laporoscopy and found that I have
    a severe case of endometriosis. I was scared becuase I never
    heard of the disease, but at the same time it was a relief to
    know that it wasn't in my head! 
    
    I have been on 800mg of Danocrine for eight months. There are
    quite a few side effects. The first 5 months on the drug I was
    still not feeling well...but  now I'm starting to feel better.
    I have noticed that my stomach is so bloated...and that my
    waiste has dissapeared. I have gained a total of 20lbs. I'm
    hoping that he will take me off this in June.
    
    If anyone has been on this drug...or knows of anyone who has taken
    this drug could you please fill me in on what to expect next.
    I'm hoping to try and start a family if we can? I'm told to wait
    three months before trying to get pregnant (that is so the drug
    will be completely out of my system) Also, does anyone know
    if the bloating is going to go away?
    
    KELLY
     
                       

                       
 
  Kelly,

  I can sympathize with you.  About 9 years ago I was diagnosed as having
  endo.  After the first laparoscopy, I went on 800mg of DANAZOL for 
  9 months, at that time the only side effect I experienced was a large
  weight gain - about 50 lbs.  After the 9 months I was taken off the drug,
  and the weight didn't just disappear! - It took me almost 1.5 years to
  lose 40 of the 50 lbs.  (dieting is not one of my strong points).  Just about
  the time I got rid of the weight, I started having severe cramps and pain,
  enough so that I was missing a few days of work each month.  

  And so this time I went for a laparoscopy and lazer surgery to remove the
  endo.  After I was on DANAZOL for another 9 month, same dosage.  And
  once again another large weight gain, and this time bloating, and water
  retention.  After the 9 months were up my Dr. recommended that I go on the 
  pill, to reduce the reoccurrence of the endo.  So once again I hit the 'diet' 
  and got rid of all but 10 lbs again!.   Things were good for about 4-5 years
  and the Dr. was very good about getting me on to a lower dosage of the
  pill as I was concerned about all of it's side effects.  

  About 1 year ago I started experiencing cramps, and painful intercourse. 
  My annual PAP came back with a borderline rating.  SO 2 months later I went 
  in and had another PAP test done, once again the lab results were question-
  able.  In the mean time the DR. had increased the dosage of the pill.   So
  now I'm getting  worried and I'm not feeling well at all, it had gotten to 
  the point that the cramps were so bad they were making me sick to my stomach, 
  waking me up at night or preventing me sleeping and I started missing hours 
  and then days at work.  I was really getting scared and a bit despondent.  So 
  for the next 3 months, I went in for a PAP and had two done, each being sent 
  to a different lab.  And they all came back normal.  Ultra sound tests were 
  next and they revealed large masses, but because my symptoms this time were 
  so different than the last 2 times outbreaks of endo,  I went in for another 
  laparoscopy.  And low and behold it was endo once again, but part of the 
  problem is that it has formed on the scar tissue from the previous 
  operation, and one of my tubes is completely blocked.  

  A few months I started on 800mg of DANAZOL again and this time a whole new 
  set of side effects - darkening of facial hair, mood swings, breast 
  reduction, loss of my waistline, hot flashes, nightsweats and the inevitable 
  weight gain, but this time I've only put on 15lbs, but then again I've been 
  dieting the whole time I've been taking the DANAZOL.  There was no response 
  to the drug the first 4 months and I was beginning to worry, since the last 
  two times, I'd felt better within a  month.   My Dr. suggested that I 
  consider a partial hysterectomy, and removal of the one badly affected ovary.
  But while considering it, increased the dosage of DANAZOL to 1200mg/day,
  which is when I stared to notice the 'outward changes in my body shape'.  
  Finally I am starting to feel better, I am taking  medication for the 'hot
  flashes and night sweats' and motrin, for the pain, but the pain is starting
  to subside, and I have for decided against surgery for now, anyway.   
  
  In another 2 months I will for another ultrasound and if it looks better, 
  then I will go back to 800mg for another 6 months, and if things are still 
  OK will go on 400mgs for 'maintenance'.  My DR. teases me saying "you know 
  the best treatment for endo is pregnancy" and I tell her, "they outlawed 
  surrogate motherhood, otherwise I might consider a career change ;^)!
  
  I will always have the 'tendency' for this condition, the results are
  treatable, the tendency is not!  I wish I could be more encouraging but
  it's been a tough year for me and I have had to do a lot soul searching.
  So I can't really tell you what to expect, since my 'own' body hasn't
  reacted the same way twice to drug.  But there a lot of women out there
  with this condition, and you can find a lot of support,  because as much
  as you  try to be logical about it, there is still a lot of emotion involed,
  with endo, because it affects the organs that (at least physically) make
  us a woman.  

  Allison

    
    My condition has only gotten worse durning the last month and as
    soon as I can get things straightened out with Health Source, I
    will be undergoing surgery.  The pain has become so severe that
    at times it is debilating.  The entent of damage to my right ovary
    is sever and it will be removed, however, at this stage, my Dr and
    I have agreed to remove the other deposits with a lazer.  
    
    This weekend I stumbled across a book that I would recommend for
    any with or involved with some one with endometriosis.  If I could
    I'd make it required reading for my group at work - it might help
    them understand my behavior the last few months.  I also shared
    this book with another woman that I know that has recently been
    told she has endo.  She and her husband both read the book and said
    it was helpful.  It doesn't have the answers - but it sure gives
    you a good view of your options.  The book is:
    
                   	COPING WITH ENDOMETRIOSIS
    			by Lyle J. Breitkopf M.D.  and
    			   Marion Gordon Bankoulis
    
    			Prentice Hall Press  $9.98
    
    Also listed was the address of the Endometriosis Association
    	p.o. box 92187  Milwaukee, Wisconsin 53203.
                                                         

    re .23
    best wishes to you. i hope the surgery is successful and that you're
    back on your feet pronto.
    
    liz

    a month or so ago, the _Boston_Globe_'s "Sci-Tech" section had an
    article about "endo", and more specifically about a book (or pamphlet)
    titled "If Joe had Endo", wherein the author speculates what it
    would be like if "endo" was a male disease, doctors were predominately
    women and treated their "endo" patients the way that most are treated
    today.
    
    I did not keep the article, but it was a pretty scathing condemnation
    of the sexism endemic to the treatment of "endo".
                                                   
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