-VISIT OUR OTHER FORUMS- Breast Health Forum Endo@OBGYN.net Fibroid Forum Mujer (en espaņol) PCOS Forum PCOS Diet Forums PCOS Medication Forum Pregnancy & Birth Forum Vrouw en Gezondheid (nederland) Women's Health Forum Young Women's Health Forum  search:

Re: post-hyst endo From: yenta (anonymous@obgyn.net) Thu Jun 3 02:40:48 1999 Messages sorted by: [ date ][ thread ][ subject ][ author ] Next message: mary: "A week of great chats on OBGYN.net!!" Previous message: anonymous@obgyn.net: "Re: Lisa Diaz percocious puberty/ lupron depot" In reply to: SusieQ: "Re: post-hyst endo" Next in thread: Matthew: "Re: post-hyst endo" SusieQ! Please feel free to email me privately if at any time you do not feel comfortable discussing particular details here. The reason I asked where you live is because I was wondering whether you were close to one of the "top endo specialists". Yes, the dr I now have is the same who performed the lap 6 months ago. He is considered to be "the best" in this region -- so if I'm already going to the best, then what!!! No, I have no children nor a husband -- a big "I wish" to both! Oh Susie, I forgot to give you a really super article from Koh and Janik -- you could probably pull it up by typing their names in the search box, but I will find it for you tomorrow and email it to you -- one of the endo sisters just recently posted it here at the forum -- just found it -- it was the much informed ChinaRose who posted it! Before signing off for the evening, yes, you're right about the bc pill and endo -- my endo continued to flare last year and I was on the bc pill -- I think the endo had gotten so bad when I was off of the pill, that it took on a life of its own and getting back on the bc pill, at that point, was unfortunately, too late to "suppress" the endo -- at least, that is what I experienced. Sleep well:0) Yen Radical Endometriosis Surgery In 1921, Dr. Sampson from John Hopkins Hospital theorized that endometriosis was due to the back flow of menstrual blood and that this blood containing uterine lining material began to grow and embed on the pelvic peritoneum and structures thus forming endometriosis. The corollary of this theory is that if the uterus is removed, then no further back flow can occur, therefore endometriosis would be cured. Furthermore, it was believed that the endometriosis implants in the pelvis responded to hormones in the same way as the uterine lining and that the estrogen from the ovaries stimulated their growth. Therefore, it was routine for the ovaries to be removed along with the uterus even in very young women in an effort to cure the pain of endometriosis. Surprisingly, there were and remains still a large number of women who still continue to have pain despite having undergone hysterectomy and removal of tubes and ovaries. Recent studies have confirmed the following. 1.Endometriosis, especially the deep variety, is not related to back flow. 2.Many women have cells derived from the early development of the pelvic organs during embryonic life, which under certain stimulation will grow into endometriosis and deep endometriosis. 3.Endometriosis and deep endometriosis do not react in the same way as uterine lining, nor do they contain estrogen or progesterone receptors in the same quantity. Therefore, hormone stimulation or deprivation has limited influence on the lesions. This means that in many cases, the use of GnRH agonists (Lupron, Synarel, Busarellin) or removal of the ovaries surgically has minimal impact on some endometriosis. 4.Deep endometriosis proliferates and invades without needing estrogen influence most of the time. It has become clear that the treatment of endometriosis can only be effective by radical excision. This term means the removal of wide and large areas of pelvic peritoneum where superficial endometriosis is present as well as removal of all deep endometriosis. Superficial Endometriosis This is usually found in the peritoneum of the cul de sac, pelvic sidewall, and bladder. It may occasionally be widespread over the whole abdomen even after the diaphragm. Wide removal of the peritoneum in the pelvis (en bloc excision) requires considerable skill and experience because it is stuck to the rectum ureter, blood vessels of the sidewall, and bladder. However, this is regularly achievable by specialist endometriosis surgeons. Deep endometriosis These are tumors or implants that are deeper than half a centimeter and typically involves the uterosacral ligament, cul de sac, rectovaginal space, posterior vagina, interior rectum, cardinal ligaments and ureter, bladder, as well as areas of large and small intestine away from the pelvis. These lesions used to be called fibrosis implying that they were no longer containing active endometriosis but rather was a fibrotic tissue reaction. It has been clearly shown in the last few years that these so-called fibrotic lesions are in fact very active endometriosis that continue to invade. Radical surgery for deep endometriosis involves removing all the deep lesions accurately. This includes excision of a part of the bladder with repair if endometriosis has invaded the bladder, excision of the ureter with anastomosis, excision of the rectum with repair or anastomosis, and removal of endometriosis around deep lateral structures near the obturator nerve and blood vessels. Having a hysterectomy and oophorectomy (ovarian removal) performed without removing deep endometriosis is the most frequent cause for persistence of pain after surgery. At the Reproductive Center, we frequently operate on such women to remove the deep endometriosis. Radical excision of endometriosis is an even more specialized procedure requiring a team of experts from other specialties like urology, general surgery, etc. However, it is important that the leader of the team be the expert gynecological endometriosis surgeon. Hysterectomy is indicated for heavy bleeding and central pain of the uterus usually due to a condition called adenomyosis, which is endometriosis of the muscle of the uterus. If the ovaries are involved in numerous endometriotic cysts, then oophorectomy can be considered. However, it is important to realize that hysterectomy and oophorectomy is performed only after radical excision of deep and superficial endometriosis has been accomplished. Otherwise, as described above, the operation is ineffective. Radical excision of endometriosis with fertility preservation Frequently radical excision of superficial and deep endometriosis is successful in alleviating pain without the need for a hysterectomy or oophorectomy. Numerous women consult us for an opinion after they have been informed by many doctors that hysterectomy and oophorectomy is the only course of action for their endometriosis. In the majority, we find that what is needed is radical excision of endometriosis rather than hysterectomy. Such women may then conceive through natural means or by assisted reproductive technology. The specialist endometriosis surgeon Only the highly specialized endometriosis gynecologic surgeon is capable of performing radical excision of endometriosis following such excision, the general surgeon is called to assist or perform bowel resection and anastomosis. The urologist is called in to assist in the performance of bladder excision and repair or ureteric excision and repair. At the Reproductive Center we have performed over a hundred cases of ureteric dissection of endometriosis with one resection anastomosis, over 70 cases of partial bowel resection and repair for endometriosis, over 40 cases of full thickness excision of bowel endometriosis with repair, and 15 cases of segmental resection (colectomy) and repair of the bowel. We have performed combined hysterectomy with bowel and bladder repair including colectomy in 10 cases. ALL OF THE ABOVE PROCEDURES HAVE BEEN PERFORMED LAPAROSCOPICALLY IN THE LAST SEVEN YEARS, DURING WHICH TIME THERE HAS BEEN ONLY ONE LAPAROTOMY (OPEN ABDOMINAL INCISION) WHEN THE GENERAL SURGEON DECIDED THAT THE COLECTOMY PART OF THE OPERATION COULD NOT BE PERFORMED LAPAROSCOPY IN 1994. In addition, Dr. Koh regularly performs radical endometriosis surgery by referral in Singapore and Hong Kong and many patients fly in nationally and internationally for this surgery at the Milwaukee center. Please direct only site related problems or comments to webmaster@MedicalWebs.com. The webmaster will not respond to requests for medical advice and does not know the names of any doctors in your area. To make an appointment, contact the actual clinic. If you do not see a navigation bar on the left, reload the frameset.. At Thu, 3 Jun 1999, SusieQ wrote: > >Yenta, Don't wait - it seems to me that your endo is returning. I also >had excruciating pain in my abdomen and vagina, radiating down my legs. >Don't wait to get another appointment. No one should have to put up >with such pain. If your doctor does not believe you, find another. Who >did your surgery? Same doc? Maybe you can find someone more sympathetic >at and ivf clinic (check out http://www.ivf.com). Do you have and children? Do >you want any? > >Yes, you are correct, the surgeon did not do any excising on me. He >just said there was no way to get it all, so not to do any. I found >that a bit strange - he said it would all go away after the hyst. (I >lived in Spokane, WA when the hyst was done, but not now.) Of course, we >know this to be untrue now. I have been checking the links you sent me, >and they are mentioning that a lot of deep endo is not effected by the >loss/add of estrogen. So your endo may very well come back despite the >bc pills. They did me no good either. > >Hope you will see that doc soon, sitting in a chair is not supposed to >be a source of pain. If that doctor tells you its neuro again, I will >personally fly over to his office and kick his butt for you!!! Don't >ever let anyone tell you it's in your head - that's dirty fighting >because the doc doesn't want to deal with a complicated case. Well, >lotsa luck - thanks for your help. I will check back to see if you have >gotten any relief. Good wishes to you, SusieQ >> >>SusieQ, >>That is absolutely horrible!!!! 31 Drs misdx'd you!!! That is >>disgusting!!! I know about the pain being so severe that it drives you >>to the verge, believe me, I was there and that is why I'm alarmed at the >>pain I now experience. I fear that it may worsen once again to that >>degree -- my pain has become constant and the bouts of misery more >>frequent and for longer periods of time. Even last week, my ovaries >>started acting up again, I was getting shooting pains from my ovaries, >>the pain shot down toward my thighs. Was also getting shooting pains in >>behind. My dr has me on the bc pill continuously so the shooting pains >>with the ovaries was rather alarming -- it made me wonder whether the >>endometrial implants on my ovaries have reactivated since the surgery:0( >> >>As for the immediate relief we may feel following surgery, it may have >>to do with the nerve endings being "numbed" -- I'm talking from my big >>toe now because I truly have no knowledge re this LOL but when I had >>knee surgery, the nerves were numb following surgery and a few areas >>around the knee remain numb today (the surgery was 6 yrs ago). >>As for the possibility of remaining endo in my body, yes, from what I >>experience, I do feel I have endo in my body but my dr says that I >>don't. He said that he thinks my problem at this point may be both >>neural and bowel related. I've already had the bowel discussion with >>you. As for the nerves, he thinks that because I was in such severe >>pain for such an extended period of time, my neurorecptors are screwed >>up and perceive pain from that region. To treat this, he has suggested >>antidepressants. >> >>As I sit here typing this to you, my pain is growing worse. I'm unable >>to sit for periods of time without the pain flaring. >> >>Did I read your post correctly? did you say that your dr did not excise >>ANY endo? In what state, city do you live? When did he do your hyst? >>Yen >> >>At Thu, 3 Jun 1999, SusieQ wrote: >>> >>>Yenta, I am so relieved to hear your answer. I am perhaps not so lucky >>>as you. I went undiagnosed for 12 years - over 31 doctors, including >>>ob-gyn specialists - until I finally could not stand the pain, severe >>>bleeding (lasting up to 20 days), pms, and extensive other problems. My >>>choices were three 1)live with it 2)take the birth control pills - no >>>good because of migraines or 3)complete hysterectomy. I was on the >>>verge of committing suicide, and decided I could not live with my >>>"problems". >>> >>>After surgery, the surgeon said he found the source of my problems - >>>endo. I asked how bad it was, he said it was hard to tell because it >>>was wrapped around everything. He said there is no way to get it all, >>>so he didn't do any removal. >>> >>>After I got home, many symptoms that were relieved, and I thought the >>>torture was over. My symptoms are greatly decreased from before >>>surgery, but not gone. I am taking hormone replacement (estrogen), but >>>still have problems. >>> >>>Now for you...if I can tackle 31 doctors, you can stay on top of >>>yours...I know how hard it is to keep complaining, but if you don't want >>>the scar tissue to spread or hurt your ovaries, you must tell all. I >>>hope you will continue to have check-ups, this disease has robbed so >>>many of children and years of agony. If the lap helped the first time, >>>then there could still be a few cells left. I have been able to find >>>lots of info. for people who still want to have kids, but very little >>>for those of us who are not worried about fertility. >>> >>>Good luck, I am going to check often to see how you do. Oh yeah, SusieQ >>>is by Credence Clearwater Revival... :o) >>>> >>>>SusieQ! >>>>Hi, I like the "susieq" -- it reminds me of an old song LOL. >>>>Susie, I have heard that unless all endo is removed at hyst, the pain >>>>will continue. Have also heard of women who experience a recurrence of >>>>pain when they start hormonal treatment. I, personally, do not have any >>>>direct knowledge or experience with this matter, I have not had a hyst. >>>>I can provide a few websites for you which may shed some light on your >>>>problem. There are more websites, but these are a few to get you on the >>>>road. >>>> >>>>http://www.endohouston.org >>>>http://www.scmc.org/endo.html >>>>http://www.womenssurgerygroup.com >>>> >>>>How long after your hyst did you start feeling the endo pain again? Did >>>>your dr put you on "suppressive meds" (bc pill) after your lap? >>>>I, too, have a nagging pain and bouts of misery. My dr tells me that it >>>>cannot be endo pain which I complain of -- he says that he excised all >>>>of the endo. My lap did make a big difference in that the SEVERE >>>>BURNING sacral/lowback pain is now gone but I still have tailbone/sacral >>>>pain/ache and sacral/lowback pain/ache although nothing like the severe >>>>burning pain which I had experienced before my lap. I'm wondering >>>>whether perhaps the extensive inflammation I experienced in that region >>>>is the cause of this continued sacral pain. I also intend to get my >>>>bowel checked to see to what degree that is contributing to my pain -- >>>>the endo did a number on my bowel -- I experienced severe pain and blood >>>>in stools on menstruation with bowel movement from the endo. >>>> >>>>I understand your feeling re the dr thinking you're nuts if you complain >>>>to him re pain recurrence. I just went through that with my dr.. Even >>>>today, I weenied out and told his nurse during our telephone >>>>conversation that I felt just great today which wasn't true -- I already >>>>feel I've got the "scarlet letter" at that office LOL!!! I already know >>>>my options since speaking with the dr last week. >>>> >>>>Yen (Tx) >>>> >>>>At Thu, 3 Jun 1999, SusieQ wrote: >>>>> >>>>>Dear Folks, I am encouraged find some answers about endo from you all. I >>>>>thought my bouts with endo would be cured with my hysterectomy. I had a >>>>>complete - ovaries too - and have been very happy with the relief. >>>>>However, I have noticed a recurrence of symptoms, and wonder if anyone >>>>>else has had this problem. I think I'm nuts, and that if I go to the >>>>>doctor again, he will tell me it is in my head, again. Can anyone >>>>>confirm continuing symptoms AFTER hysterectomy? I am curious what you >>>>>did, testing recommended, and how you were treated? >>>>>Thanks to any who can respond, SusieQ >>>>> >>>>>-- >>>>>SusieQ >>>>> >>>-- >>>SusieQ >>> >-- >SusieQ > Next message: mary: "A week of great chats on OBGYN.net!!" Previous message: anonymous@obgyn.net: "Re: Lisa Diaz percocious puberty/ lupron depot" In reply to: SusieQ: "Re: post-hyst endo" Next in thread: Matthew: "Re: post-hyst endo"

recommended search...
OBGYN.net forums endometriosis zone Web

use when must restrict search to only the endometriosis forum...
Enter search keywords:
	Returns per screen: 10 25 50 100 250 Require all keywords:

Return to

Technical Problems: webmaster@obgyn.net Last Updated: Mon Nov 2 04:20:35 2009