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Re: How surgery went/ Linda, (long)From: anonymous@obgyn.netMon Feb 26 20:49:13 2001
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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