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Re: Hystorectomy due to EndoFrom: Melisa (anonymous@obgyn.net)Mon Feb 28 06:40:08 2005
At Sun, 27 Feb 2005, JAMIE wrote: > >At Sun, 27 Feb 2005, Julie wrote: >> >>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 >> >HELLO MY NAME IS JAMIE. IM 27YRS OLD AND HAVE SERVERE ENDOMETRISIOS. IM >AM ALSO IN THE MIDDLE OF MAKING THE HARDEST CHOICE OF MY LIFE ( WHETHER >OR NOT TO HAVE A FULL HYSTORECTOMY),AND IM SO CONFUSED. IVE TRIED >EVERYTHING THERE IS OUT THERE AND NOTHING HAS WORKED. I CAN TOTALLY >FEEL FOR MELISSA I TOO AM ALWAYS TIRED,HAVE NO SEX DRIVE,COLD >SWEATS,HEAT FLASHES,AND CONSTANT PELIVC PAIN. I POP TYLENEOL LIKE TIC >TACS. MY DOCTOR DOESNT WANT TO GIVE ME THE HYSTORECTOMY BUT HE FEELS >THAT IM ONLY GETTING WORSE THEN BETTER. IVE BEEN IN PREMATURE MENAPOUSE >FOR 8YRS AND THE PAIN IS STILL HERE. IM TRYING TO FIND ANY INFORMATION >OR SITES I MIGHT GO TO TO FIND OUT IF THERE IS ANYTHING ELSE I CAN TRY >BFORE I TAKE THIS LEAP. I WOULD APPRECIATE ANY FEED BACK FROM YOULADIES >IF YOU KNOW ANYTHING. MY HEART GOES OUT TO ALL OF YOU AND YOUR IN MY >THOUGHTS. > >-- >JAMIE >HACKENSACK,NJ Julie and Jamie good luck with making your decisions. The site that was posted hystersister.com is a great site. I've gone there and got a ton of information. There's a lot of women on there with the same problem we have and you can read about there decisions and how it's helped or not helped them. It has opened my eyes a little more as too what I'm getting myself into. I'm scarred as heck, but I so want my life back. I hate waking up in the more with massive back pain and wondering if today will be a good day or a bad day. I'm too the point of 1 good week out of the month. Today is day 4 of my good day, but it's always in the back of my head when will it start again. I still can't belive there are so many of us out there with this problem and there's no cure. I'll keep you guys posted as too what I find out at my dr's appt on the 8th. Thankfully dh is going with me. I think he wants his wife back too.
-- Melisa Gladstone, MI
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