Re: Pain Continuing after complete Hysterectomy and Removal of Endometrial Implants
From: SusieQ (anonymous@obgyn.net)
Sat Dec 30 09:36:51 2000
Hi ladies,
I am so sorry for all the pain you are going through. There is one
other option for those of us without ovaries....it's called aromatase
inhibitor. There is a doc doing a trial in Chicago, and he will work
with your local doc to get you the meds and consultation over email,
etc. It is a very promising therapy for recurrent endo after
(tah)tvh/bso. You can review the information here:
http://members.aol.com/endofl6/aromatase.html
I have a large research document that the good doc has sent to me, and
will be happy to send it on if anyone would like.
Contact the doc here:
Serdar E. Bulun, MD
Director, Division of Reproductive Endocrinology
Departments of Obstetrics and Gynecology and Molecular Genetics
University of Illinois at Chicago
820 S. Wood St., M/C 808
Chicago, IL 60612
Tel: (312) 943-7318Fax: (312) 996-4238
Email: sbulun@uic.edu
>
>At Thu, 11 Mar 1999, clm wrote:
>>
>>At Tue, 29 Dec 1998, Anna wrote:
>>>
>>>Hi there. I have to tell you that I was so releived to find that I'm
>>>not the only one having so many complications after a hysterectomy.
>>>
>>>I am only 28. I had a hysterectomy last March because of endo. Prior
>>>to my hyster I had multiple cysts removed from both ovaries several
>>>times. I also went through 5 DNC's. Finally we opted for a hyster
>>>after we had exhausted all other possibilities.
>>>
>>>Since my hyster I have had surgery 7 times. About a week after my
>>>hyster my son (about 80 lbs) jumped from the top of a bunk bed and
>>>landed on my stomach. Needless to say I spent about 6 hours in surgery
>>>that day for them to repair all the damage. My kidneys, bladder, and
>>>intestines were all torn open. Since the repair I have had major
>>>compications.
>>>
>>>I seem to produce adhesions very fast. The amount of adhesions one
>>>person forms in about 5 years I produce in about 2 weeks. Not to
>>>mention the fact that my intestines keep twisting when they settle.
>>>
>>>Because of the intestinal problem I can't keep solids down. And
>>>sometimes it gets so bad that not even water will stay down. Since the
>>>hysterectomy itself (about 9 months) I have lost over 100 lbs. My blood
>>>count is very low and I have no energy. I have seen several different
>>>doctors from the best hospitals in the world. And my physician is well
>>>known for his ability in handling such cases. However, it seems like
>>>the cycle never ends.
>>>
>>>I'm not depressed, just extremely frustrated. I was very glad to find
>>>that I'm not the only one having such difficulty. I was beginning to
>>>wonder to be honest.
>>>
>>>Can I ask. How have you dealt with the emotional ups and downs through
>>>all of this. I have been on pain killers for just about the entire
>>>time. And this whole ordeal is really beginning to take a toll on my
>>>family. I'm a single parent and that makes it worse not to have any
>>>back-up or mental support. Yes I have family but they all just sit and
>>>cry. Everyone swears I'm going to die over this whole ordeal. Each
>>>time they put me under I have a harder time waking up. They have had to
>>>use the paddles twice on me during surgery. But surgery is the only
>>>option once by intestines flip otherwise nothing goes through my system.
>>>
>>>At Mon, 2 Nov 1998, anonymous@obgyn.net wrote:
>>>>
>>>>Hello. I am 32 years young, ha ha. And had 8 surgeries between 1991 and 1994.
>>>>The eighth was a total hysterectomy with lysis of many many adhesions and
>>>>removal of a double cyst on my left ovary (along with the ovary). I have
>>>>since been on Depo-Provera (directly after hysterectomy for Stage 5 Endo.) and
>>>>all of the known Estrogen Replacement (HRT's). They even took me off of all
>>>>HRT's and put me on Evista for 4 or 5 months to see if the Endo was indeed
>>>>coming back. I just consulted with yet another Dr. (ob/gyn) and he says - as
>>>>the rest it is too risky even to do a Laparoscopy to see what is going on and
>>>>now put me back on Prem-Pro. I don't like the answer-there is nothing we can
>>>>do. Too many surgeries. Too many adhesions. Too complicated. Etc. I am
>>>>not giving up. I still have cramps like my period cramps down my groin and
>>>>flanks to my knees. Severe low back pain etc. And hot flashes, night sweats,
>>>>and Irritable Bowel. Please help with some suggestions or something.
>>>>I really need some feedback ASAP. The Endo and Adhesions involved my bladder
>>>>rectosigmoid colon, ureter (was horizontal with adhesions and kidney was
>>>>double its size, during my last surgery. I also got a free tummy tuck as
>>>>because of 2 previous Laps. they had to cut off 3 1/2 inches of my tummy and
>>>>staple shut as well as suture. So, it could be the adhesions and the endo
>>>>together causing pain. Thank you for your help. Lori Jean. I can be
>>>>contacted at ljwatkin@aol.com or Lori Jean Watkins, 812 Oaklawn Dr., Columbia,
>>>>MO 65203. Thanks again.
>>
>>--
>>I am going thru the same thing, I thought they had done enough. My family say's why do you still hurt so much, how come you have to sit on the heating pad. Can't the doctors take all of the endo at the same time to stop the pain? I don't know the answer. Thank for saying your story so I know I am not alone.
>>
>--
>I had a complete hysterectamy and appendix removed in April because of endemetriosis - am now experiencing pain on right side of groin area traveling to my thigh. Had cat scan done with no results. Have taken two Lupron shots with no relief. Am told if pain does not go away, may have to have exploratory surgery. Anyone else with similar symptoms?
>
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