having abdominal hysterectomy need helpful hints

Discussion in 'Fibromyalgia Main Forum' started by crumpton, Oct 15, 2006.

  1. crumpton

    crumpton New Member

    I am having an abdomninal hysterectomy next month to get rid of very large fibroid tumor in the uterus that is the size of my fist.

    Not sure about keeping ovaries - need help in deciding -
    Thinking that I want to keep them to get everything out of them that I can. I am 50 and having hot flashes now and also still having crazy periods.

    Periods are irregular, painful, and very, very heavy.
    Have heard that keeping the ovaries, I will still have PMS symptoms - Well Yuck-

    What does everyone think?

    Also, ladies that have had surgery with fibro - Any ideas or suggestions to keep flare to the minimum? I have had pain and energy doing well for last 4 months or so and hate to lose it. Help please ..

  2. BethM

    BethM New Member

    Have a long and serious talk with the anesthesiologist.

    Be honest about your fears and about any previous surgery experiences you have had.

    You may want to have some printed info about FMS for the anesthesiologist to read, in case he is unaware of our problems.

    He or she can have a huge impact on your comfort levels when you come out of surgery, and on keeping your physical stress levels down as much as possible.

    Keeping your stress levels down will decrese the probability of a fibro flare after surgery.

    Actually, sometimes the relaxation from the anesthesia and the strong pain meds used after surgery can help your fibro to subside a bit, for awhile, anyway.

    Best of health and healing with your surgery.


  3. emttoni

    emttoni New Member

    First I had my tubes tied. Then when I wanted to have a hysterectomy I had to go thru an ablation - where they burn the lining of the uterus to stop or slow periods. Didnt do a thing. So then 6 weeks later had to go back in for hyster.

    I actually felt pretty good after the hyster. Just had the pain from the surgery mostly. Now I wish I had them take out the ovaries too as I am having trouble with the ovaries and cant get a dr to take them out withuot a whole load of tests that I just cant do right now. Arrggg. Doctors!

    But after teh hyster the FM didnt really hurt me at all. But everyone is different too. Best wishes to you!

  4. Andreafrankie

    Andreafrankie New Member

    I had a TAH on 8/28/06. I am 45 and planned on leaving both ovaries but one had a huge cyst so the doc removed it and left the other healthy one. If I'd been even 3-4 years old, my doc said she would have wanted to take the ovaries too. It was my decision. The only reason I decided to keep them was so I wouldn't go into menopause right away.

    My personal opinion is that if I'd been even a couple of years older, I'd have had everything taken. Now I'm second guessing myself and wondering if I did the right thing and what if I develop ovarian cancer, yadda, yadda. Borrowing trouble really.

    My recovery has been uneventful and my FM didn't bother me anymore than normal and was even a bit better. Most likely due to prescription pain meds I was on. One thing from a TAH is that you will be so tired for several weeks if not months. I think anyone who isn't is the exception to the rule. My doc prepared me well for the increased fatigue and I'm just trying to roll with it as I get back to work. Hope some of this is helpful for you! Good luck, it really is worth it, imho!

  5. crumpton

    crumpton New Member

    I appreciate all the information and "I have been there stories" and what has happened to you.

    I am glad that it seems that I might not flare like I thought I might. A very good idea to talk to the anethesiologist ahead of time. Not sure how soon I will talk to them before the surgery.

    Ovaries - The ovaries I am still debating - I want him to check them and the Dr. said that they give off soemthing to help with my sex drive (if I had one now with all the meds I take)
    Your comments about problems after the hysterectomy with my ovaries was a concern the dr. had too.

    Pain - He said they give me a morphine pump for the first day or so so I can regulate my pain. I have been on methadone 5mg for pain for about 6 months and told him that I was concerned about my tolerance for pain meds and that I didn't want to go into withdrawals or have my pain flare. This is the time I wish I wasn't on anything heavy for pain to worry about this.

    Thanks for your experiences.
  6. BethM

    BethM New Member

    Call your surgeon, tell him or her that you need an appointment for a consultation with the anesthesiologist.

    That appointment can be set up for you.

    If the surgeon resists, be insistent, don't take no for an answer. However, I suspect there will be no problem.

    Your medical group or insurance most likely has a patient advocate or patient assistance department, so you can call them if you need help getting your appointment set up.

    Also, before each of the surgeries I have had (except the emergency c/section for my first baby!) The anesthesiologist has has a little conference with me just before the surgery.

    You can remind him then of your concerns, if you've spoken to him beforehand.

  7. shootingstar

    shootingstar New Member

    The major problem was endometriosis, but had a history of fibroids, polyps and one small ovarian cyst some time before. I am very glad I had everything removed. The adjustment was not difficult. I took premarin for about a year with no problem but did not like the idea of taking hormones. I weaned off it with no problems over the period of a couple of months or so.

    Ovarian cancer is often not diagnosed in time, and that is one thing I am glad that I do not have to worry about. I have a friend who was diagnosed a couple of years ago and still going through chemo with a very guarded prognosis. It has been really difficult. The cancer has spread.
  8. Mikie

    Mikie Moderator

    Please know you are in my thoughts and prayers.

    Love, Mikie
  9. charlenef

    charlenef New Member

    you can also have these balls ejected into your uterus that cuts off the blood supply to the fibroid and they go away.i have heard this is a better opt. ask the dr charlene
  10. crumpton

    crumpton New Member

    I appreciate any and all prayers for me. I started my period today and have been in bed most of the day.

    Thanks again for all the help everyone here gives.

    [This Message was Edited on 10/15/2006]
  11. JLH

    JLH New Member

    First of all, when you keep your ovaries, you DO NOT still have PMS symptoms!!! That is the craziest thing that I have every heard in all the hysterectomy stories!! LOL

    I had a partial hysterectomy in 1982, which means that I have had my ovaries all these years--so I would know!!

    You'll never have another heavy, painful period again! This is why I have always said this was the BEST surgery that I have ever had!! LOL

    I was 32 when I had the surgery and by keeping my ovaries, I was not thrown into menopause or anything--no hormonal problems at all!

    So, I would keep your ovaries if your doctor suggests. I can't really recommend one way or another since I don't know what your doctor has advised--but, I would go with what the doc recommends is best for you.

    With your anesthesia, I would ask the doc to put something in it to eliminate/reduce nausea or vomiting when you wake up. The worst thing ever is to be vomiting all day from the after affects of the anesteshia after just having major abdominal surgery.

    Have you discussed with your doc the chances of having a vaginal hysterectomy? If you could go that route, it would be so much less painful and speed up your recovery a lot.

    I had a vaginal hysterectomy--that's why I say it was the easiest and best surgery that I have ever had! However, my daughter had to have one, but medical reasons prevented her from having a vaginal type, she had to have the large abdominal incision--similar to a C-Section--which slowed her recovery. However, she did tell me that the hysterectomy was still a less painful surgery due to the fact that you don't still have your uterus to be contracting back down to its original size.

    Also, to speed up your recovery, getting up to walk when you want them to really helps even though you think they are just trying to be really mean to you!! LOL

    Good luck on your surgery.

    Wishing you a speedy recovery, too,
  12. mariee

    mariee Member

    Hi there,
    I had a hysterectomy last year...docs were sure I had cancer, so everything went. I don't have cancer, and I may have made a different decision had I known the final outcome.
    A great website for pros and cons of keeping ovaries...
    They continue to be a great source of info...
    Great reading on pros and cons. I did not know ovaries continue to provide a little hormone...
    They send checklists too pre and post surgery...stuff I never knew..and I felt so prepared...w. just 3 weeks notice.
    Best wishes...
  13. rosemarie

    rosemarie Member

    I was just 34 when I had my total abdoomanal hyesterectomy . I was not to thrilled about it at the time ,but I was in so much pain with every period that I was getting a shot of demoral for the intense pain I would get.

    My doctor got in there and looked around and then took it all. MY left ovary had a cyst the sixe of a large hens egg on it and it was filled with some kind of infection and lots of fluid. The ovary was filled with cysts as well and there were vericose viens over both ovaries. The right overy was filled with cysts and a few eggs and the huge vericose vein over it as the vein was the size of a mans thumb and would get bigger with each period I had.

    They took my uterus and it was in bad shape and the muscle was aged and full of old blood. It looked like that with each month as my body prepared for having a period the blood veins would come up to form a lining incase of preganancy.

    And then the blood vessels would seal off and sink into the uuterus,{ Well that was what happened to the normal womaen but I was not nromal}

    MY veins would raise up and bleed in to the uterus and then sink down and keep bleeding in to the uterine muscle.

    And it caused me so much pain that it was horriable. They took my cervix as well as the appendix as my dcotor said that it he left it

    I would have to come back and need it out so it went too . After the pathologist had looked at every thing my appendix was infected as well so it was good that it came out. And I was told that I may have been able to get pregnant but there was about 10% OF my carring the baby to term.
    I was a wreck as I had wanted a baby boy as I had 3 girls but it was not to be. I learned to adjust to it. And I had less problems than my best friend who had her hyesterectomy 1 year before mine and they left her ovaries as her doctor thought she was just to young .

    Yet with in a about 6 months after her surgery she was put on hormones as she was not producing enough of them and she had cramps every month when it would have been that time of month. She is now fify like I am and is still on hormones and I stopped taking mine about 4 years ago.

    I had all the signs of memopause right after surgery and was given hormones injections while in the hospital . And I took hormones for close to 12-13 years.

    But as time has passed I have not had to worry about getting cervical cancer or ovarian cancer as I don't have them any more. I never had to go thru having the cramping that my friend did .

    She still has to worry about getting overian cancer and she has lost a sister to cancer. And as I have Breast cancer in my mothers side of the family I get it checked out every year.

    And I try to get my mamograms every other year. I have not had the problems of having cyst in my breasts and my mamograms have all been normal.
    But with the risk of cancer I stopped taking my estrogen on my own as I just didn't want to add to the list of things I have...

    So from my view point you would be better off getting rid of both of them now and not have to worry about getting ovarian cancer.

    I know of quit a few womnen who have goneback and had surgery to remove their ovearies. AS the risk of problems were still there.

    Talk this over with your doctor and tell him about your fibro and how stress and surgeris have affected you and make sure that you will have all the pain control that you may need at hand and that if you request some pain meds you will be able to get them in a timely matter. That way you will heal faster as you will not be in pain.

    IF your doctor does what some do is to numb you up before he makes his insions and before he is done and ready to sew up up he will spray the surgical area with a long lasting anesthic , that way your body will be numb and you should be given pain meds before you wake up from surgery , Just remember that you need to take DEEP BREATHES after surgery so that your o2 does not get low and that oyou are breating good.

    Good luck and I hope that all goes well.
  14. srollins

    srollins New Member

    i had everything removed but ovaries in 83 at the age of 36. best thing i ever did for myself.

    in 97 had to go back and have my ovaries removed.

    i would do it again in a heartbeat.

    where those periods were concerned the stress of them was enough to aggravate the fm worse then the actual surgery.

    i think every woman should have the option of the surgery at some point in her life.

    no regrets,
  15. hugs4evry1

    hugs4evry1 New Member

    I'm sorry I'm really tired today and didn't read all of the above posts.

    So I can only tell you from my experience...I had pre-cancerous cervix when I was about 20yrs old. Then they found pre-cancer of the uterous about 5 years ago.

    So I got a hysterectomy but kept my ovaries...

    Now I wish I had let them take one out. That would have cut my chances of ovarian cancer by 50%.

    Honestly, I was only thinking about my sex life and wanted to keep my ovaries. I wasn't thinking that I'm 2 for 3 and the odds of me having ovarian cancer surely must be high.

    Hugs and good luck in whatever you decide.

    Nancy B
  16. Adl123

    Adl123 New Member

    I understand your trepidation, but don't worry. I had a hysterectomy when I was 37, and my uterous was so full of fibroids that they called down the hospital photographer. It was a blessing in disguise.

    Aboout your ovaries, I don't know if the Dr. will take them out if they're not diseased. My Dr. left mine in, and I now have a cyst the size of a baseball on one, and I can't have surgery any more, because of allergies. So, I have it aspirated every few years - not a fun thing. I , personally, wish my ovaries had been taken out, along with my appendix. However, I will admit, that I had a very easy time with menopause,and even with my periods, before that, so I'm probably not a good example.

    To help handle the pain, I would suggest trying to keep your muscles as relaxed as possible. If you have waves of pain,- it helped me to relax and ty to "become one with" the pain and go wth the flow. This helped. And, of course, medication did, too.

    Good luck to you, and let us know how it went.
    ' Hugs,
  17. kirschbaum26

    kirschbaum26 New Member

    I am planning to have a TAH in the next few weeks. I had pre-cancer in my endometrium. I was told they have to take the ovaries, otherwise, you really can have an increased chance of having ovarian cancer. They are also taking lymph nodes to make sure that there is no pre-cancerous cells anywhere else. I am a bit concerned, as I have had lots of problems with many different systems (liver, lungs, adrenals, etc) over the past year. I am also going to an oncologist before my surgery to have a complete workup.

    I took ENBREL and HUMIRA for about a year, and apparently, these biologics are now being shown to increase the chances of developing many cancers, not just the lymphoma that they originally thought.

    I had a c-section, and did not consider that recovery particularly difficult. I am hoping that it is similar.

    Good luck, and hopefully we can compare recovery notes.

  18. lillyrose33

    lillyrose33 New Member

    Best advice I got before my total hysterectomy was to rest, rest and more rest and ask question.

    Having a pillow to put at your belly was very helpful, helps when you sneeze or cough and having lots of pillows in your bed, I used them to prop me up and one for my side when I would sleep on it as soon as I was able to.

    Not like others I was down for quite awhile and had to keep changing antibotics...my incision under my belly( I have a roll there) did not heal properly so had to go to trauma center to have it taken care of. It wasn't as bad as it sounds. They just cleaned it for me and gave me antibiotic cream to use and told me to use a pad(glad I held on to some) to place under the role of my belly and it worked great. It finely healed.

    Just do as your doctor advises and just listen to your body. Everyone is different and experiences different pain levels and healing.

    I did go to hystersisters and I liked it there...just like anywhere else take everything with a grain of salt...as they say.

    It has been five years now and I am doing ok as far as that part goes. Had my worst flare up one year after my surgery. Don't know if the surgery had anything to do with it or not but my legs have been worse since then and my colestrol has gone up also. My sex life is also changed and my husband is very patient...bless his heart. As I said earlier we are all different but just wanted to give you my side and wish someone had done it for me.

    Best of luck to you and wishing you a speedy recovery.

  19. crumpton

    crumpton New Member

    So many replies and I appreciate all of them. The doctor called and the surgery has been moved to 10/25, NEXT WEDNESDAY!

    I go this week to have my pre-op and will be talking to my anethesiologist about my pain and fibro.

    Have thought about taking some of my drugs with me but concerned I might take the wrong thing. I am not much of a rebel anymore.

    I have found the Hyster Sister site and yes it is scary to read some of the stories and what they prepare you for but it has also helped me to be aware of what will most likely happen. Everyone is different it seems.

    Thank you for helping me to decide about the ovaries. After reading all of replies it seems that taking them out at my age with me going thru perimenopause already, might be the best.

    Also the PMS with the ovaries left in was at a medical site, with video and test questions. I knew that I wouldn't have a period and I AM looking forward to that. WHat sane woman wouldn't look forward to getting rid of the curse! But the PMS was new info and after reading your answers it might be false. Oh well,

    I guess next week, I'll know. I hope I can stay calm for a week.

  20. srollins

    srollins New Member

    if the dr. agrees to take the ovaries, let him!
    when i had mine, i begged the dr. to take the ovaries, but because i was 36 he said he would look at them and if they looked fine he would have to leave them

    i knew then that i would have to go back someday and have them removed and sure enough it happened. i told him at the time that i feared that would happen.

    i had my ovaries removed when i was 50 and i did at that point start with the hot flashes and all but oh well, i lived.

    just remeber about this surgery, there may be some discomfort with it but it is only temperary. it won't last for ever.