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Re: Hystorectomy due to EndoFrom: Julie (anonymous@obgyn.net)Sun Feb 27 14:16:11 2005
At Thu, 24 Feb 2005, Sara' wrote: > >At Thu, 24 Feb 2005, Melisa wrote: >> >>>From what I found out so far about the hyst through the bellybutton is >>not all dr's do it. I think it's just too new. I've heard the hospital >>that I'd have it done at does do it that way so I'm hoping. I'll let >>you know what I found out. Wow you've had a lot of laps done. I'm also >>to the point where I can't afford to go in every 3 months to have major >>surgery done. The last lap I had cost over $2000 and I even have >>insurance. I figure if I can get this done and have some relief, no >>periods, hopefully get my energy and sex drive back it will definately >>be a win win for me. I'm not sure if my expectations are too high or >>not, but that's what I'm looking for. I have a 7year old and 3 year old >>and a wonderful husband and I hate feeling like I'm not doing my share >>of the work because I'm always falling asleep at 7pm. Currently I work >>from 8-5pm, pick up the kids from day care and get home about 5:45pm, >>fix dinner, do dishes (if I'm up to it), then I'm sooo tired I can >>hardly function. I've figured out of a month I usually have 1 good week >>where I can stay up till 9:30 or so and get the cleaning and laundry and >>stuff taken care of. It's completely crazy. Do you have the extreme >>tiredness too? I was talked to my husband last night and I told him I'm >>living in a daze right now. It's like it's not even me kind of out of >>body thing. It's so hard to explain to someone who hasn't felt it. I'm >>going to have my thyroid checked also - do to my extreme tiredness and >>I'm alway cold. >> >Hi Melissa, >I just wanted to chime in. I am 35,& have been dealing with endo. for >about 20 years now.My Doctor suggested I have a total hysterectomy with >removal of both ovaries & retain the cervix.I had a second opinion from >a different GYN who agreed with the surgery.I also have a 3 year old & I >know how exhausted you can feel.I guess my main concern is to make sure >you have tried everything first - a hysterectomy is no joke, I have >spoken with women that have had it done and it takes about a year before >you really start to feel like yourself again.The second Doctor I >consulted with told me her sister has endo. & had a hysterectomy years >ago but kept an ovary, she has had problems ever since & is on Lupron >again - she is afraid to go back for removal of the remaining ovary so >she still has all the problems she had before the surgery. If you opt >for the hysterectomy, be aware that mostly that is all the Doc. is >concentrating on - they will probably leave whatever endo. is there and >you will need to either have both ovaries removed & go through surgical >menopause (and at a later time start HRT - they do this to give the >remaining endo. time to die out first),or be aware that if you keep an >ovary or start HRT right after surgery you will likely continue to have >endo. problems & require removal of the remaining ovary at a later >date.Both Doctors told me that pain relief depends upon exactly what is >wrong & where the endo. is - if you have chronic pelvic pain, some is >possibly due to endo. & some may be due to adhesions, compressed >nerves, & what not. Both also told me that your response to Lupron >gives you an idea of what to expect in the way of pain relief from a >total hyst. Basically, if you tried Lupron & still had no relief from >pelvic pain while you were on it - chances are you won't have the relief >you are hoping for from the hysterectomy because your pain may be due to >more than just endo.So, I personally think it is worth it to try all the >meds. first - especially due to your age.As far as the LAVH goes - not >all Docs. are skilled enough to perform this surgery, the length of >time you are under anesthesia is unappealing to most Docs., and it's not >really safe to do if you have had previous abdominal surgeries & they >usually end up having to go the abdominal route anyway.You can keep the >cervix regardless of the procedure assuming you have had normal pap >smears & no other medical reasons not to - with a lot of Docs. it's >more routine habit than necessity. Both Docs. told me that honestly >it's fine to do a LAVH if you have uterine prolapse or the like, but for >endo.they really need to do open laparotomy to really see what's what.I >am sorry that this was so long, but hopefully it helps you out >somewhat.Feel free to email me if you want to talk. >Sara' >>At Thu, 24 Feb 2005, rachel wrote: >>> >>>no problem. I had initially assumed the same thing about the lap first >>>but asked to make sure and found out i was wrong in my assumtion. i >>>dont know if they can do it through the belly button because of the >>>stuff being taken out. Myb they can i asked my doc about something of >>>that nature and he said no so i dont know if they cant or he just didnt >>>want to. I am at the same point you are i have tried everything else >>>known to man and had 3 laps in 4 years and nothing works, i as well am >>>tired of being sick and tired but at the same time i dont know if doing >>>somehitng that wont help or may not is worth it. I'm presently awaiting >>>a reply form a specialist in another state and either today or tommorrow >>>i will entering yet another study for a different drug. i guess i'm >>>just poponing the hyst and the chance it dont work as long as possible. >>> rachel >>> >>>At Thu, 24 Feb 2005, Melisa wrote: >>>> >>>>Thank you. I will add that too my list of questions. I would assume >>>>that they would do a lap then the hyst. but it's alway good to ask. I >>>>went back a few months to read other posts on this and I haven't seen >>>>any where they've done the hyst through the bellybutton? Has anyone had >>>>it done that way? That's the way I would like it done then they can >>>>leave the cervix and I guess you aren't down for very long? After going >>>>back and reading too I know that this may not cure what I have but I'm >>>>too the point where it seems to be the only answer for me. I'm soooo >>>>tired of being tired and in pain. I just want my life back. >>>> >>>>At Thu, 24 Feb 2005, rachel wrote: >>>>> >>>>>hello dear, >>>>>sorry to hear youre not feeling well. i'm 28 and have seen three dr's >>>>>very recently that think i should have a hyst. so i did some reasearch. >>>>>my present doc says he wont kill or remove present endo at time of hyst. >>>>>that it should just die off after some time. he also said theres a good >>>>>chance i'll still have much pain after but ive done everything lse so >>>>>why not. i dont like that theory. i reseaching i found that even if a >>>>>hyst is done if the endo is not killed and removed it can still carry >>>>>on! Dr. Redwine commented on this. The remaining endo can change >>>>>certain things into the oestrogen which feeds it. it produces its own >>>>>enzyme that takes care of doing this. the third post down on yesterdays >>>>>list comments on this in the third paragrph. it gives the exact names >>>>>of things. I would ask the doc when you go if theyre gonna kill and >>>>>remove present endo. if not is it really worth going through the misery >>>>>to find out it didnt help? When i go back to mine i'm taking abunch of >>>>>material i have found and printed from specialist and am going to make >>>>>him read and respond to it before making any decisions. best of luck. >>>>> >>>>>At Thu, 24 Feb 2005, Melisa wrote: >>>>>> >>>>>>hello all- I'm glad to see I'm not the only one with all these problems. >>>>>>Some days I swear I could go insane. I'm a 30year old mother of 2 that >>>>>>has been dealing with this for the past 3 years and am going in on March >>>>>>8th to talk to my dr about scheduling a Hystorectomy. I had a lap done >>>>>>in April of last year and I only got relief for 3 months. I've always >>>>>>had trouble with BC Pills, but tried them again after the lap didn't >>>>>>work. I did see a little relief but they turned me into the wicked >>>>>>witch and I had to get off them. It was really bad. I was just >>>>>>wondering if anyone else has had the hystorectomy and what the side >>>>>>effect are. I've read about the side effects, but right now I have most >>>>>>of them with my endo (major fatigue, no sex drive). As for other other >>>>>>posts with how to deal with the pain - what works me is rest and I take >>>>>>800mg of ibuprophan every 6hrs and I add tylanol every 4 yrs. I usually >>>>>>do that on my worst days. Thanks for reading. > >-- >Sara'Fleming > It's good to see Sara's response. I too am on the road to a hystorectomy, I will be getting a second opinion late March. I have just finished my 6th Lupron injection and will use continuous birth control until I make my final decision. I have been advised that it is important to not feed the endo, especially if I'm considering a hysterectomy. Lupron worked (and has worked in the past)so very well for me - I have been pain free for the last 5 months (it took one month to kick in)! My OBGYN seemed to think a vaginal hystorecotmy should work in my case (he said it is standard to take the cervix now adays unless you've had abnormal paps); I just had a lap before begining Lupron - so were assuming I'm as clean as can be expected. I'd like more info on the pros and cons of taking the cervix though - if anyone else has more info. Good luck Melissa -keep us posted on your decision.
-- Julie Gilbert, AZ
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