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ATTN: !!!B.R.!!!shmultz
From: Yen (anonymous@obgyn.net)
Mon Feb 26 23:02:34 2001
Hi B.R.
OF COURSE we are interested LOL -- so please tell all!
Sincerely,
Yen
At Mon, 26 Feb 2001, anonymous@obgyn.net wrote:
>
>At Sat, 28 Nov 1998, Christine wrote:
>>
>>Yenta,
>>It sounds like you have most of these things sorted very well....You
>>mentioned in your posting that most everyone on the list has endo as a
>>possible result of scar tissue, in this book I am reading, "THE
>>ENDOMETRIOSIS ANSWER BOOK. NEW HOPE, NEW HELP" by Niels H. Lauerson,
>>M.D., Ph.D, he states that the endo being a result of surgery is very
>>rare. I have been in pain for 6 years, and it started shortly after I
>>started the 11th grade...not a very srtessful time in my life (at
>>least I don't think it was) and never had any surgeries prior to that,
>>in fact the pain just sort of started during my period one month and
>>contiued. Having had my first lap in July 1997, I was painfree for
>>about 4 months and then back in the dr's office I went with the same
>>complaints as the I always did have. I had (and still do although not
>>AS heavy) really heavy bleeding (we're talking changing sanitary
>>napkins every hour if not sooner, I can go now on a normal basis of
>>changing) and the dr told me it was nohting to be concerned about and
>>put me on Tri-Cycln, which helped ease the bleeding, but didn't help
>>with the pain...SOOOOOO guess what was next....you guessed it! 800
>>MG's of Motrin IB (prescription strength) 4 times a day during my
>>period and as I needed. Needless to say, I REFUSED to take that much
>>IB because it's just not good for a 16-18 year old girl (or any person
>>for that matter) to be taking 32 MG's of anything. Well to get back
>>on track, the IB didn't work and still doesn't (not even for
>>headaches). Noone in my family has a history of endo (as it CAN be
>>hereditary, although in few cases). So nobody can really say what the
>>cause of endo, they can only tell you the symptoms. Nobody can tell
>>you a cure, they can only tell how to (supposedly) be painfree for a
>>bit. SO LADIES I GUESS IT IS UP TO US TO FIND OURSELVES A CURE....
>>
>>TO ALL WHO ARE INTERESTED IN FINDING A CURE, READING THE
>>AFOREMENTIONED BOOK HAS A LOT OF GOOD IDEAS TO THE RIGHT PATH. THE
>>BOOK TITLE AGAIN "THE ENDOMETIOSIS ANSWER BOOK. NEW HOPE, NEW HELP"
>>by Niels H. Lauersen, M.D., Ph.D.
>>
>>~Christine~
>>
>>---yenta <anonymous@obgyn.net> wrote:
>>>
>>> Hi Superwoman!
>>> Didn't expect a response so soon! Thought you would be resting for at
>>> least a couple of days!!
>>> First and foremost, thanks for the concise reply, great job!
>>> You mentioned that you dr. won't know how well it went til he "looks
>>> inside" during your post-op visit. Do you mean that he's doing a
>>> "second-look" laparoscopy?! It sounds like this dr. has a pretty good
>>> track record!! Does he have you on BCP's still? What about the other
>>> tube and ovary as well as the interior of the uterus? Was there a test
>>> performed which determined whether there was significant blockage
>>due to
>>> adhesions? Does such a test exist? You say he noticed AFTER he removed
>>> your tube that it was covered with endometrial implants -- does that
>>> mean said implants were not visible to the eye prior to removal?
>>> I, like most of us, am interested not only in curing ourselves of this
>>> miserable condition (although that is our priority at the moment!!),
>>but
>>> I'm also interested in the many similar symptoms which we share as
>>well
>>> as the possible cause for our endo problem. So far, I have noticed
>>> commonalities including hernia, pelvic pain, back pain, abdominal
>>pain,
>>> irritable bowel syndrome, for some - weight gain, cystic ovaries,
>>> painful BM - for some, burning and stabbing sensations, bloated
>>feeling,
>>> nausea, heartburn, constipation - for some, etc..
>>> I've briefly read the theories citing the causes of endometriosis.
>>From
>>> my VERY LIMITED KNOWLEDGE regarding this endo subject, I've come to my
>>> own conclusion regarding the probable cause of this problem -- of
>>course
>>> I'm probably entirely wrong! (after all, I'm only a patient and have
>>NO
>>> medical background whatsoever!) -- but if it makes me feel better to
>>> have an opinion on it, so be it!!! Anyway, I find that I tend to agree
>>> with the transplant/replant theory. So far, from what I've read in
>>this
>>> forum, it seems we have all had either an inflammatory event or an
>>> operation which may have led to the scattering of this endometrial
>>> condition outside of the uterus. This in turn perpetuates this
>>ongoing
>>> process. Seems to be a reasonable explanation to me -- at least one
>>> which I can accept.
>>> As for the cure!! It thus follows that removal of the endometrial
>>> implants also makes sense. Problem for us: Is it possible to remove
>>all
>>> endo -- what about the microscopic endo yet to fully develop? What
>>about
>>> the ADHESIONS which follow the raw surface from which endo was
>>removed?
>>> And what about the possible inflammation resulting from adhesions
>>> pulling on body? Does this only serve to exacerbate and perpetuate
>>this
>>> problem? Do any of you know of endo patients who've been cured of endo
>>> AND "painful" adhesions, if so, how long have they been painfree?
>>> Sorry Linda and fellow endo sisters, I got carried away here, but I've
>>> been trying to make sense of all this endo stuff in my head and it
>>just
>>> flowed out onto this post!!!
>>>
>>> Linda, I am so happy for you that you were able to find a good dr. We
>>> are all keeping you in our thoughts. Please keep us informed of your
>>> progress. Best Wishes
>>>
>>> Yenta
>>>
>>> At Fri, 27 Nov 1998, Linda wrote:
>>> >
>>> >Hi Yenta:
>>> >
>>> >I hope I answer all your questions, but feel free to bang me over the
>>> >head again with them if I forget some.
>>> >
>>> >I had an emergency c-section for my son (almost 12 yrs ago) due to
>>> >sever preclampisa they took him 2 months early.
>>> >
>>> >I had really bad cramps with my periods since I remember starting
>>> >them, but when my son was about 5, I starting getting this serious
>>> >lower pelvic pain. After seeing these (quacky) doctor (course, didn't
>>> >know that then) she did a lap and found nothing. Lost the best job I
>>> >ever had due to time missed from the pain. Then finally moved to
>>Reno
>>> >Nevada. Felt great for a long time and fingured maybe the change in
>>> >altitude. Then after a very stressful softball game, the next day I
>>> >couldn't get out of bed - went to the family dr who said the knot I
>>> >has pointing out was a hernia and scheduled surgery. The pathology
>>> >reports from this surgery is what diagnosed the endo. The hernia was
>>> >surrounded with endo. Then a miscarriage at 4 months along and
>>unable
>>> >to get pregnant since (given up now, figured hubby and I are about
>>> >done with the child-rearing and I'm going to be selfish and not start
>>> >again (there are other reasons too). Two years after the hernia
>>> >surgery I was in a lot of pain again and my gyn here wanted to do
>>> >another lap. She found endo in all the common spots (can't remember
>>> >off hand the names) and very very heavy adhesions. My adhesions had
>>> >caused my utersus to be stuck in place so when I sneezed I was
>>tearing
>>> >myself. She also used Interceed to try and prevent further
>>adhesions.
>>> > Well, 1 1/2 later I'm in pain again and it's affecting my personal
>>> >and professional life so (to make a long story shorter) I quit seeing
>>> >her and went to this doctor recommended to me named Bruce Farringer
>>> >(in Reno Nevada). His surgery was much much more aggressive in
>>> >lasering the endo and removal/cutting of the extrememly heavy
>>> >adhesions. At my request, he removed my right tube and ovary (even
>>> >though it had always looked normal - that's where a lot of my pain
>>was
>>> >centered) He said that when he removed it, he could see endo all over
>>> >it and we will know more from the pathlogy reports when there are
>>> >done. He also let saline solution (he just called it water) in me
>>and
>>> >I could swear he said 5 liters, but does that sound huge to you? The
>>> >unfortuate thing about the adhesion prevention is there isn't really
>>> >any way to confirm they worked without more surgery. The only thing
>>> >we can tell is - well, I don't hurt know so something is working -
>>and
>>> >that's how I will base it.
>>> >
>>> >I'm trying to buy time before a hyst or put it off for good. I'm
>>> >hoping that this surgery will do this. I can tell many differences
>>> >between this surgery and my others - so I'll keep my fingers crossed.
>>> >
>>> >My doctor's record for repeat surgeries for such has only been 1 or 2
>>> >people out of (I think he said) 40 or so a year. So, he seemed to
>>> >have good hopes (we'll see if that changed after he got a look inside
>>> >when I go to post-op appt).
>>> >
>>> >As far as the hernia thing - I also found that very weird that a lot
>>> >of us have them. Mine was in my c-section scar and again that
>>started
>>> >about 5 years after the c-section. The dippy doctor in Texas missed
>>> >it entirely even when I was pointing to it and telling her that "this
>>> >hurts". The surgeon here was funny (he got mad at me because I had to
>>> >keep putting off my post-op appt because work keep sending me out of
>>> >town) he wanted to tell me what a site I was in the OR room because
>>> >they all heard that could happen but had never seen it. So needless
>>> >to say, everyone was in looking at this hernia with endo.
>>> >
>>> >Yenta, please let me know if I missed any questions. I'm back down
>>to
>>> >1 pain pill every 4 hours but now I'm running a fever of 100 and
>>don't
>>> >know if I should be worried about that.
>>> >
>>> >Take Care,
>>> >Linda
>>> >
>>> >---yenta <anonymous@obgyn.net> wrote:
>>> >>
>>> >> Linda,
>>> >> You poor thing. My heart goes out to you. I hope this one will
>>do it
>>> >> for you. We're all very happy to hear that you're breathing
>>again!!!
>>> >> Geez, that must have been pretty scary! Thank G_d that you have
>>such a
>>> >> wonderful husband who is there for you. I feel so selfish asking
>>you
>>> >> these questions while you are in such pain, so if you feel up to it
>>> >in a
>>> >> couple of days, if you could, i'd like to hear more about your
>>case.
>>> > How
>>> >> many laps have you had? Who performed this one? Is yours a case of
>>> >> strictly endo or adhesions or what? You mentioned a C-section, did
>>> >your
>>> >> problems begin after delivering your child (post c-section) --
>>had you
>>> >> experienced endo before you had your child? When was the previous
>>lap?
>>> >> You see, your case sounds so similar to mine and I'm so
>>apprehensive
>>> >> about my next surgery -- I don't know whether I should just live
>>with
>>> >> what I have, I'm afraid of making things worse. I also have been
>>on
>>> >> BCP's for a year, to no avail. The low back pain has become such a
>>> >> consistent form of pain in my life. Obviously, the bcp didn't help
>>> >> either of us. I know, from what my body feels like, that my
>>ovaries
>>> >> have also readhered to my body. I also experienced abdominal
>>> >problems,
>>> >> both sides, but also in the appendix region. Of course, I won't
>>know
>>> >> until they go in there, but I am just afraid that they are going to
>>> >find
>>> >> it all over the place (given the sensations I feel - low back,
>>pelvic,
>>> >> side, abdomen, even up by the ribs!). I'm just afraid of what they
>>> >may
>>> >> find, and then I'm also afraid that any severing of endo or
>>adhesions
>>> >> will only result in fresh raw surface for my many new adhesions to
>>> >> reform -- Like a never ending cycle. I don't know if I'm doing the
>>> >> right thing. I really commend you guys for having the courage to
>>go
>>> >> through this again and again. I also have some craziness going on
>>> >with
>>> >> especially my left ovary. I don't know what to do. On my lap last
>>> >> year, I had ONLY VERY SEVERE PELVIC PAIN. Now, around March, my
>>back,
>>> >> abdomen, and other pains have resulted!!! So you see my
>>apprehension.
>>> >> For me, each surgery tends to bring on more problems -- I'm am
>>really
>>> >> thinking of backing out of my surgery for that reason. I'm just
>>> >> terrified that I making a bad situation worse.
>>> >> You also mentioned that you had a hernia. I think I may also have
>>> >one.
>>> >> This is also a recurring theme with many of us endo sufferers --
>>I've
>>> >> heard a number of endo sisters complain of a hernia and yet,
>>> >supposedly,
>>> >> hernias are said to be rare in women! Whats up with that?!
>>> >> What does your doctor think of your outlook? Does he think its
>>gone?
>>> >If
>>> >> he thinks it may return, did he give a guess as to amount of pain
>>free
>>> >> time? Does he have you on any ongoing treatment? What about
>>> >> "second-look" surgery -- where they do another lap in a few weeks
>>to
>>> >> wipe out the new adhesions?
>>> >> Linda, now you see why I wanted you to wait til you felt better
>>before
>>> >> reading this! I really hope you a good Thanksgiving --- as good as
>>> >> possible considering what you've gone through and the pain you're
>>in.
>>> >> You probably can't even taste the food on those pain pills!!!
>>> >> I truly hope you feel better SOON. Sleep. I'll cross my fingers
>>for
>>> >> you in hope that you are at last pain free.
>>> >>
>>> >> Yenta
>>> >>
>>> >> At Thu, 26 Nov 1998, Linda wrote:
>>> >> >
>>> >> >Thanks to everyone to sent me wishes for my surgery. I hurt like
>>> >sh*%
>>> >> >but better today than yesterday. The gas caused the WORST pain I
>>> >have
>>> >> >ever had. I've had several of these surgeries but this one was
>>the
>>> >> >most intense. My endo was back all over the place even though I
>>have
>>> >> >been on continous birth control pills for almost a year (hate to
>>have
>>> >> >seen it without the BCP). Adhesions were all back in the same
>>place
>>> >> >as before (adhering my utersus to a c-section scar in the front,
>>> >fatty
>>> >> >appendix tissue in the back, ovaries stuck, etc) The dr also
>>said I
>>> >> >had developed a "new/different type" of adhesions - I'm waiting
>>for
>>>
>>=== message truncated ===
>
>--
>HI , I am in my forties now and suffered from Endo. about 25 years or more.
>I do beleive that I have found a solution for this wordly disease. I went to my specialist and told him about it, and what made me realized that I was spot on target was the fact that he asked me to talk to a person who runs a 'care centre' for women with this debilitating illness. So I was asked to write my experience and hopefully it would get published in the endo. newsletter.
>My last operation took 4 hours and I lost a lot of blood and needed a transfusion, but after a few weeks of recovery, I started a new life.
>There are no gimmicks, simple common sense approach and always remember that 'We Are What We Eat !!!
>If you are curious, please let me know.
>Sincerely, B.R.
>
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