Conference turris::womannotes-v2

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CAINE::BUTLER "There's more to it than fate"         12 lines  21-SEP-1988 16:36
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    	Hi.  I imagine Endometriosis has been discussed in the previous
    	version of WN, but maybe some of you could have some input for
    	me.  I've had two laporoscopies and one laporotomy (bad spelling)
    	and unfortunately have found myself in pain that's once again
    	becoming intolerable.  I wondered if any of you know of anything
    	(besides Danazol (sp?) and being pregnent) that helps ease the
    	pain?  Things to avoid, things to help?  
    
    Thanks!
    
    Mary Jo

          
LEZAH::BOBBITT "Skylarking"                          13 lines  22-SEP-1988 09:31
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    If you are interested in what's already in the files about
    endometriosis, please look in the previous version for:
    
    742 - endometriosis - what is it?
    434 - laparoscopy surgery
    
   
    
    -Jody
    
    

Moved by moderator from a redundant topic...
    
    -Jody
    
    
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Note 508.0                        Endometriosis                       No replies
DISCVR::SECRETARY                                    13 lines  16-MAR-1989 16:18
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    Some time ago, a book was referenced on Endometriosis.  
    
    Could someone please provide me with the title/author of this book
    and any recent medical information they have regarding this
    condition.
    
    I am heading for another "preventive maintenance" d & c and laparoscopy
    very soon judging by my symptoms and am interested in any new
    information.
    
    Thank you.

    Moved by moderator from a redundant topic..
    
    -Jody
    
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Note 508.1                        Endometriosis                           1 of 1
RICKS::BUTLER "There's more to it than fate"         19 lines  16-MAR-1989 16:59
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    	I'd also be interested in hearing any information any of
    	you may have in regards to Endometriosis.  To date I've
    	had 4 laporoscopies, 1 laporotomy and have unsucsessfuly
    	tried Danazol, continuous LoOvral and daily Lupralide
    	injections.  From my most current doctor (I must hold the
    	worlds record for referals) the suggestion was a pre-sacral 
    	neurectomy (the cutting of the nerves from the spinal cord
    	to the uterus - ugh!!) as the most current option along
    	with having a lazer laporoscopy done.  The endometriosis
    	is 'everywhere' which is why I think I am having so much
    	trouble.
    
    Thanks!
    
    Mary Jo
               
    ps- I have seen the previous notes here and in version 1.
    
    	

    I have an excellent book on endometriosis published by the
    Endometriosis Assoc. in Milwaukee.  I'll post the name of the book
    and how to order it on Monday.  They provide other publications
    as well as monthly newsletters.  I'll post membership registration
    info., too.
    
    I've had endo. for 20 years, and it's been well-controlled by
    Depo-Provera injections (a progesterone).  I had only one major
    operation when it was first discovered and had a laparoscopy last
    week.  It has grown back enough to warrant a hysterectomy, but I'm
    using info. from the Endometriosis Assoc. to explore other options.

    Judy

    Re: .4
    
    I hope you will get other opinions on the neurectomy (severing the
    nerves).  This is usually a last resort when the pain becomes
    quite severe and nothing else can be done for it.  The endo. book
    I have talks about neurectomy.  If it's not too long I'll try to
    add a quote.  Otherwise, I've already promised to post the title
    and how to order.
    
    Judy

    	Judy,	I'd be grateful if you could enter any information re.
    	the book.  When you ordered it, approx. how long did it take
    	for you to receive it?  
    	
    	Having a neurectomy isn't my top choice right now.  I met with
    	Dr.Donald Peter Goldstein last week and have a Laser Laparoscopy
    	planned for 4/15, I really hope he can get the painful 'varmints'
    	out as living in such constant physical pain is so difficult.
        If anyone has *any* information or feedback about either Dr.
    	Donald Peter Goldstein (he's at N.E.Baptist, Brigham and Woman's,
    	Childrens Hospitals and Harvard) or Laser Laparoscopies I would
    	welcome it.
    Thanks!
    Mary Jo
    

The endo. book I'm referring to is as follows and is not from the
Endometriosis Assoc., as I had thought.  It should be available/
orderable from any bookstore or the publisher:

	ENDOMETRIOSIS by Julia Older; 1984; Charles Scribner's Sons,
	115 Fifth Ave., New York, NY 10003; $7.95

I'm borrowing this copy from a friend, so don't know about length of
time to order.  The Endometriosis Assoc. recommends this book but says 
it is now out-of-date (although I find it excellent), and they recommend 
the following publications orderable from their organization:

	OVERCOMING ENDOMETRIOSIS: NEW HELP FROM THE ENDOMETRIOSIS
	ASSOC. - $8.95

	LIVING WITH ENDOMETRIOSIS - $8.95

In addition, these newsletters may be back-ordered from the Assoc.:

- Special Issue on Endo and Intestines (Vol. 9, No. 1).  Complete
  coverage on gastrointestinal symptoms associated with endo..  Covers
  4 groups of gastro. symptoms (bowel, adhesions, prostaglandins,
  candidiasis); new surgical approaches; irritable bowel syndrome - $1.50

- "Medical Records: Do You Know What's In Yours?"   Covers importance of
  medical records for women with endo., how to obtain records - $1.50

- Special Double Issue on Hysterectomy (Vol. 9, No. 3).  Unique aspects
  of hysterectomy for women with endo., issues in making a decision
  for/against hyst. for endo., ovaries in or out?, surgical menopause,
  replacement hormones (estrogen, progesterone, testosterone), endo.
  continuing after hyst., sexuality after hyst. with removal of the
  ovaries - $3.00

- Videotape, YOU'RE NOT ALONE...UNDERSTANDING ENDOMETRIOSIS.  Half-hour
  video on symptoms; development of the Assoc.; surgical approaches to
  treatment (especially laser); hormonal treatments (including GnRH);
  coping with endo.; Assoc. members in support group setting.  Excellent 
  for sharing with spouse, partners, family and friends - $15.95

- Research Recap: Potential Risk Factors for Endometriosis - A First
  Comparative Study - $1.00

Assoc. members receive 6 newsletters per year, and they are entitled to
a contact list of members in their area.  The Assoc. encourages networking
with other women in your area, and some locations have their own chapters.
To become a member ($20) and/or order publications contact:

	Endometriosis Assoc., Inc.
	8585 N. 76th Place
	Milwaukee, WI 53223
	
(Anyone without endo. may also become a member, and contributions are
appreciated.)
    

This excerpt quoted from ENDOMETRIOSIS by Julia Older, 1984, Scribner's,
pg. 96:

	If conservative surgery (for endo.) is scheduled, the patient 
	should be prepared for one or all of the following:

	- excision and/or destruction of endometrial implants
	- excision and folding of the uterosacral ligaments in
	  order to suspend the uterus
	- appendectomy
	- presacral and/or uterosacral neurectomy **
	- removal by excision of endometriomas on the ovary,
	  and
	- possible removal of the uterus, parts of the Fallopian
	  tube(s), and parts of one or both ovaries

** These excerpts on presacral and uterosacral neurectomy are quoted from 
pgs. 100-101:

"......painful periods plague a majority of women suffering from
endometriosis.  If a woman has a moderate to severe case, she can
assume (unless told otherwise) that when she undergoes conservative
surgery she will be given a PSN (presacral neuroectomy).

What are the advantages?  Relief from pain would seem to be an
obvious advantage, but this is not always the result, especially if
the endometriosis has spread to areas not connected with the presacral
nerve center.

In addition, the patient must keep in mind that pain is a body mechanism,
a warning that something has gone wrong.  After the nerves are cut, the
endometriosis could be spreading or recurring without pain in the same
area without the woman's knowledge.

Uterosacral neurectomy (USN) is a procedure similar to presacral neurectomy,
but the nerves that relay messages from the uterus to the brain are cut.
The uterosacral neurectomy prevents spasms of the uterus that may cause
a large amount of blood to back up through the Fallopian tubes.  Both
these routine procedures have serious disadvantages for the woman who has
undergone conservative surgery in order to conceive.  The pregnant
woman who has undergone PSN and USN will not be aware of changes in the 
first stage of labor.

Another disadvantage of nerve cutting could be the impairment of normal
bowel and bladder function.  The patient should seriously consider which
is worse, pain or the possibility of incontinence and related problems.

End of quotations......


Be aware that this information published in 1984 could be out of date,
and perhaps PSN and USN are no longer "standard" procedures.  For current
information on PSN or USN consult your doctor.

Judy

    

    	Thank you Judy for typing that all in!!  I'll be calling
    	books stores tonite.
    
    	I appreciate all that you typed in, the neurectomy to me
    	is more serious than the the dr who suggested it explained.
    	It's good to know (in advance!) that my fears around having
    	a neurectomy were just.
    
    Thanks again-
    
    Mary Jo
           

    I am considering laser laparoscopy with continued hormone treatment
    (Depo-Provera) rather than a hysterectomy but have yet to see a
    laser surgeon for an opinion.  Does anyone know of the success rate
    of laser laparoscopy in controlling endo., and in particular can
    the laser remove the web-like adhesions on the tubes and ovaries?
    
    I'm 42 and beyond planning for a pregnancy, but I'd really like
    to keep my organs.  Two of my doctors say I'd be better off with
    the hysterectomy and keeping only one ovary.  This is a lonely
    decision......

    Judy

    re: .11
    
    Well, I now have the answer to my own question.  Laser laparoscopy
    is generally reserved for women who are trying to preserve their
    fertility.  It can work well to remove adhesions that may be blocking
    the Fallopian tubes, but it is still considered rather risky for
    working on endometriosis on the bladder and bowel (which is what
    I have at this stage).

    I'll be glad to post my experience with hyst. if/when I ever make
    a decison about this.......
    
    Judy

    I had a "vaginal" hysterectomy done.  They removed my dead uterus
    and left the ovaries.  I don't take hormones and the only difference
    in the way I feel is NO MORE PAIN! and more energy.  I was in the 
    hospital for 3 days and out of work for 4 weeks.  Personally, I'm
    glad I had it done.
    

    Judy, I'm very curious as to why a laser laparoscopy would be
    considered risky for getting rid of implants on the bladder and
    bowel.  I know I have enometriosis on my bladder and 'feel' that
    I have the same on my bowel.  With only 4 days left until surgery
    I'd really like to hear what you know on this.
    
    Thanks!
    
    Mary Jo
    
    (Maybe it lies in the determination of severe?  Mine are the little
    yet painful implants that are not usually asscociated with infertility).

    MJ -
    
    Sorry I didn't see this sooner!  I have quite a lot of adhesions
    between the bowel, left ovary and in the cul-de-sac which obscures the 
    visibility via laparoscope.  This restricts the surgeon's ability
    to properly aim the laser beam.  Accidental rupture of the bowel
    can be life-threatening.  In a laparotomy they can raise the organs
    into better visibility, thus making laser treatment a safer procedure.
    
    I'm sure every surgeon has their own standards for degree-of-risk
    depending on their experience and skill with the laser and laparoscope.
    I suspect that with only endrometrial implants (which look like measles,
    by the way) and few adhesions laser laparoscopy is a good option.
    
    Good luck, and hope you're back to windsurfing soon.
    
    Judy

    < Continuation of .15 >
    
    Also, I should mention that my left ovary is so bound up in adhesions
    that it should be removed.  This can only be done via laparotomy.
    
    My bladder implants are minor and could probably be removed safely
    via laser lap., but there's no point in using this procedure when
    the bowel and left ovary can't be helped by it.
    
    Judy

    	Ahha!  Now that all makes sense.  At this point I've gone through
    	so much that a 2nd laparotomy to insure ALL implants are removed
    	sounds better to me than 2 or 3 laser laparoscopies which is how
    	it seems this surgeon would rather work.  I'm starting to believe
    	that I'll come out of this procedure o.k. and am getting excited
    	in hopes of hearing/feeling good news.  I hate being so desperate
    	for relief!
    	I'm sorry that you have severe adhesions, that certainly makes
    	matters difficult and I wish you the best with your treatment!!
    
    re. windsurfing :-) :-) IF this all goes well I'll be taking a sanity
    	week to undo the collected heaviness that the past 9 months have 
    	brought and will be in Hatteras later in April.  Yahoo!  Have you
    	been out this spring?
    
    Mary Jo

    MJ - Hope you are well-recovered in time for your trip.  No, Colorado
    lakes/reservoirs are a bit cold yet, but I'll be sailing in Mexico
    next week!!
    
    J.

    One interesting aspect of endo. that I have heard from my doctors
    is that one woman may have only minor implants, yet experience
    severe pain, while another may have an advanced case of endo. with
    adhesions, etc., and not be aware that much is wrong.  My surgeon
    talked about a case where he operated on a woman who had only mild
    symptoms of endo., but when he opened her up it looked like someone
    had dropped a bowl of blueberries in her abdominal cavity.

    Having just had yet another laparoscopy and D & C for my neverending
    endo. I find that I am very angry.  I am angry at the choices women
    are given to deal (or not deal) with endometriosis.  I am angry that
    the painful periods and lifestyles that women suffer as a result
    of endo have been ignored for so long because of the male influence
    in the medical field and that attitudes that female sexuality and
    menstruation have always been taboo subjects. 
    
    I have just finished reading a book called "Coping with Endometriosis"
    that I found in the library.  It deals very frankly with this disease
    and I learned alot - I think that's why I'm so angry.  
    
    It also deals with the "myths" of endo.  The one that hit home with me
    is that idea that pregnancy will "cure" endo.  NOT TRUE!  This book
    denounces any doctor who tells their patient this.  It also says that
    a complete hysterectomy could also fail to eliminate endo if part of an
    ovary is left behind (even a microscopic piece of ovary).
    
    So what now?  Do I take a chance and have another baby?  If I
    successfully carry this baby (that I would love to have!) will we both
    be okay?  Do I risk the side effects of Danazol and become fat and
    fuzzy again?  Do I continue on a "Preventative Maintenance" program of
    laparoscopies and D & C's until menopause some 15 years down the line?
    Do I just wait until I need a hysterectomy and then find out that maybe
    it didn't work?  
    
    Some choices we women have!  Thanks for letting me vent!
    
    Debra Troconis
    RUTLND::TROCONIS
    

>>>>.....................................................It also says that
    a complete hysterectomy could also fail to eliminate endo if part of an
    ovary is left behind (even a microscopic piece of ovary).
    

    I would like to relate that I had a complete hysterectomy with 
    "everything" removed EXCEPT for one ovary.  The one left was
    "dusted off" as I put it and gives me natural hormones monthly.
    This has been going on since 1975 and I have NOT had any pain/
    problems with re-occurance since then.  

    I would recommend anyone with family complete to consider 
    seriously this operation.  The freedom from pain and the ability
    to walk around ALL month upright plus other added bennies makes
    this decision one to really look at as the plan of action.

    justme....jacqui    

    My daughter took Danazol for two years, and she had two major side
    effects.  Her voice changed and became deeper...in the process she
    also squeaked as a young man does during puberty.  Her breasts became
    considerably smaller requiring a change in bra size.  She did not
    menstruate during that time either.
    
    The drug did reduce some of the symptoms she was experiencing, but it did
    not eliminate the endometriosis.  She has since take birth control pills 
    and is now taking a drug Norlutate..a form of progestrone.
    
    From what Judie Danazol is very effective after the type of surgery
    your wife had.

    Hello, this is John Francini's wife Helen, about whom John had posted a
    note earlier today, concerning my recent problems with endo.  To clarify
    a couple of points for anyone who read the original note:  I had an
    ultrasound done only once, not three times as John had said, and the
    ovarian cyst my doctor removed was not NEARLY the size of a grapefruit! 
    (John was using a bit of literary license in both cases.)  Anyway, the
    problem is that I was coming along just fine after the surgery,
    enjoying feeling normal again for the first time since March, until I
    started taking the hormone Danazol (also known as Danocrine) which my
    doctor said would shrink whatever endometriosis was still left in me,
    and would also atrophy the smaller cyst that she had burst but not
    removed on my left ovary.  After some initial misgivings I decided that
    if this was to be my ticket out of another operation, then it was a
    Good Thing, and I was happy about taking it.  As John's note indicated,
    after only five days on the drug I ended up with severe mood swings and
    depression (nasty but mostly bearable for the required six months'
    worth of treatment) and a marked worsening of the symptoms of the
    cystitis I'd developed in the hospital -- urinary tract infection (UTI)
    pain is NOT acceptable for six months.  For those who haven't seen 
    John's note, I should add that I've had urinary tract infections ever 
    since I almost lost a kidney at age 8.  When I called my doctor to 
    let her know what the situation was, she seemed most surprised; it 
    seems no one has ever had UTI symptoms worsen while on this stuff, so 
    I'd invented a new symptom.  During my next phone call to her, in 
    which I explained that a lowered dosage of the drug had caused the 
    same side effect, she said it might be psychosomatic, which, frankly, 
    I was not too pleased to hear, and then said I could either continue 
    the drug and see if the side effects stabilize (too painful and too 
    damaging to the body in general to have a six-month-long UTI)
    or stop taking the Danazol (a much better solution, at least until the
    UTI clears up).  She did at least say that some women's bodies cannot
    tolerate the drug.  Since then the depression has stopped, the UTI pain
    has begun to clear up (it takes FOREVER) and I've started to feel much
    better.
    
    Anyway, I'm writing to ask if anyone out there has had a bad reaction
    to Danazol, and especially if anyone knows whether it has caused
    problems with cystitis or kidney infections before?  True, the
    Physician's Desk Reference book does state that Danazol should be
    administered only with the greatest of care to patients who have "renal
    dysfunction" (kidney trouble) but the kidney infections I had were
    several years ago, and though cystitis is sort of related, it's not the
    same thing.  (And of course the urologist I've seen since I was a kid
    is on vacation till September!)  Although 'm not depressed anymore, I'm
    feeling rather upset at the moment, because as far as I can tell, if I 
    can't take Danazol I could easily end up needing another operation for 
    the same condition -- or perhaps I would need another operation even if
    I did take the drug; from reading these notes I've learned that it
    doesn't always work.  
    
    Well, thanks very much for letting me sound off.  And I really would 
    appreciate any advice/comments/tips on slowing down future endo growth
    without expensive pills that do funny things to the rest of one's body
    that anybody out there might care to send my way.  Suggestions, anyone?

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Note 41.37                        Endometriosis                         37 of 37
VMSZOO::ECKERT "Night faded into blossoming dawn"    18 lines  25-FEB-1990 19:14
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    A relatively new drug used to treat endometriosis I didn't see
    mentioned in this note is nafarelin acetate.

    Nafarelin and danazol (Danocrine, Cyclomen) have a similar
    efficacy - ~85% of patients experience relief or significant
    improvement measured in terms of relief of pelvic pain and
    decrease in size of endrometrial lesions.

    Nafarelin does not have any of the major side effects of danazol
    (oily skin, acne, deepening of voice, increased upper body mass).
    The major side effect of nafarelin is the occurrence of hot flashes;
    it has been reported that most patients using the drug tolerate these
    fairly well.  Another side effect is loss of bone density (~3% over
    the 6 month course of therapy); in most cases the bone density loss
    is reversed once the drug is discontinued.  Nafarelin has also been
    noted to increase the level of HDL (the good form of cholesterol).