Ever had a hysterectomy?

Discussion in 'Off The Beaten Track' started by Buzz, Aug 20, 2013.

  1. Buzz

    Buzz Well-Known Member

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    I have signed the consent forms and my surgery maybe at the end of next month. The doctors told me that my fibroids are so large that removing them is the only other option other than just leaving them alone which may cause further problems. In their opinion since I am in my mid 40s it is highly unlikely that I will ever get pregnant naturally so a complete removal of both the fibroids and uterus is best and safest option. To be honest, this is not the first time I have heard this diagnosis but the fact that the doctor who is gonna do the surgery spent less than a minute with me does not fill me up with confidence. I spent most of the time talking to her staff including a resident. The idea of going under the knife and having my stomach cut open (the official term is laparotomy ) is completely wigging me out. It isn't helping that the door on me ever having children will be pemanantly closed.
     
  2. my little pony

    my little pony snarking for AZE

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    my dr told me that was my best option. i wanted to research it on my own and ended up having fibroid embolization instead. it worked great. i felt great by the end of the day, no incision, although they do require you stay in the hospital overnight.
     
  3. snoopy

    snoopy Team St. Petersburg

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    I have been researching this condition for months! I was in the boat of considering an embolization vs. hysterectomy for fibroids. In my case, I am opting for the hysterectomy due to:

    1) The size of my fibroids are equivalent to a 19 week pregnancy. The embolization would only reduce the volume of my uterus by half, so not an ideal outcome (for me).

    2) I have 5 fibroids and was told that having the embolization is no guarantee that I won’t create more down the road. I have 15+ years to menopause so the likelihood is decent that I would continue to have fibroid problems.

    3) Embolization is likely to eliminate the ability of having kids too. (If you want an option that preserves fertility, you need a myomectomy. You really have to push for this option though ‘cause it turns out, a lot of doctors are lazy and this is a complicated surgery whereas a standard hysterectomy is easy – from the doctor’s perspective.)

    I do know several people who have had the embolization and have been very happy with it. I think I waited too long to pursue treatment so, now, it is not a great option for me.

    I am hoping to have a robotic supracervical hysterectomy which reduces scaring, hospital stay and recovery time. Losing my uterus is not a super concern of mine as I think I am too old to have children regardless of the state of my fertility. My mom was an older mom, and it has its disadvantages. But recovery time is important to me – I really don’t want to be in bed for 4-6 weeks, so hopefully the robotic surgery works out. If interested, you may be able to find someone willing to do the robotic surgery – I had to do some poking around because not all doctors are skilled enough to do it on a large uterus.

    Sidenote: Navigating the healthcare system is a pain in the ass.
     
  4. Corianna

    Corianna Active Member

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    I fought having a hysterectomy for several years, (for fibroids) . In the end I begged for one. By that time I could barely make it off the couch, and completely understood why some older women in Victorian fiction retire to the daybed and never get up. My health and looks and quality of life improved immediately after the surgery, and there were no problems other than a six week prohibition against conventional sex. I was in bed only a few days, but I would run out of energy quite suddenly for a couple of weeks.
     
  5. BlueRidge

    BlueRidge AYS's snark-sponge

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    I guess it all depends on how large they are. Mine weren't that large when I was diagnosed with them in my early 40s and my doctor's advice was just to let them be. If I had it to do over, I'd have had the surgery then. The condition became unbearable by the time I hit menopause time and I had to have them out. I was never so glad to have anything done in my life.

    I had an abdominal hysterectomy as they were too large for anything else. I wasn't working at the time so the 6 weeks recovery time was not a problem.
     
  6. my little pony

    my little pony snarking for AZE

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    how large is large? in the words of the surgeon, mine was the size of the head of a newborn.
     
  7. BlueRidge

    BlueRidge AYS's snark-sponge

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    I don't think mine were that large. My surgeon said my uterus looked like a rotten canteloupe.
     
  8. snoopy

    snoopy Team St. Petersburg

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    Heh, that is true for me as well. For the past two years, I was all “I can live with my fibroids and I’ll be all natural and alternative treatment and eat raw foods and chase butterflies”. Now I am like get my uterus out of here NOW!
     
  9. Bailey_

    Bailey_ Guest

    I have not had a hysterectomy, but I had my gallbladder out this past January and it totally freaked me out! The surgeon gave me confidence, but although they could see stones in my gallbladder they could not guarantee that it was the cause of my symptoms and then they presented a whole list of complications/long term problems that could result from the surgery. When I told the nurse that I was nervous, she said "Well, you can always back out. You don't have to do this" - I get that they need informed consent but don't say that after they have advised that I needed the surgery. It made me loose even more confidence in my decision and I was a mess by the date of my surgery. I'm happy to report that I had the surgery and had no complications or problems since the surgery. All my symptoms are improved.

    It's not easy. Surgery is very scary and it's hard to make a decision as big as this and not wonder if you are making the right decision. To quote a dear friend, you just have to take the information you have, make your decision, and let it go. Have you seen the site - Hystersisters.com. I found it when I was google searching... "scared of surgery." Looks like a very supportive site.

    I wish you the best of luck with your surgery - I believe everything will be fine! And yes, navigating the health care system is a nightmare. For a system that is designed to help people in their time of need, there is not very much about it that is easy or helpful most of the time...
     
  10. Buzz

    Buzz Well-Known Member

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    My largest fibroid is about 7 inches and outside the uterus. I look heavily pregnant and now that I think about it I feel it too. Now that I have thought about it a while I was wondering about having a myomectomy instead. Anyways I have another CT scan coming and one more doctor's appointment before surgery. I am scared out of my wits but I believe I have waited too long and now have no other choice.
     
  11. PRlady

    PRlady Smoking

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    Corianna, I'm just like you. I felt lousy through much of my forties. I lost a day or two of work every month due to heavy bleeding. I had a lot of pain. And I clearly wasn't getting pregnant with a much-desired second child. And I still didn't want such radical surgery.

    I waited so long I ended up having a hysterectomy on an emergency basis, I was bleeding to death. I needed a transfusion. And the fibroids were in the wall of the uterus and the surgery was complicated, so it was the old-fashioned way, with a six-week recovery. Not fun.

    And it was the best thing that ever happened to me, healthwise. I was 48 and within a year I had energy, I lost weight, my whole metabolism improved and despite some scary warnings beforehand, everything...functioned. When I think of how many women suffer out of fear of the surgery, or of an understandable desire to preserve fertility, I'm so sorry. Once you're 45 or so, it really can be a life-saver.
     
  12. BlueRidge

    BlueRidge AYS's snark-sponge

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    My sister had a large fibroid on the outside of the uterus and her doctor recommended hysterectomy and she refused so they did surgery to just remove the fibroid. She was in her mid-forties and went on to a normal menopause.
     
  13. snoopy

    snoopy Team St. Petersburg

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    Buzz, I am not sure if you are in a relationship or not but it may help to say (to the doctors) that you are or will be trying to have children. When the topic of myomectomy came up for me, I was told that the surgeon wouldn't waste six hours of his time on someone who didn't want to get pregnant. I was :eek:. I would have better understood being told that they were trying allocate healthcare dollars more responsibly than be told I wasn't worth six hours of the doctors time.
     
  14. Cheylana

    Cheylana Well-Known Member

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    My good friend had many enormous fibroids - inside and outside the uterus - that she was regularly asked about her "due date". Yet she had a successful myomectomy, performed by a NYC surgeon who specializes in "minimally invasive" surgeries. The surgery required a vertical cut (hardly minimally invasive) but she did get to keep her uterus, which she was adamant about, and the scar has faded significantly. If that is what you want, you may need to shop around, but there are doctors who very well be able to help you. Best of luck to you.
     
  15. LilJen

    LilJen Well-Known Member

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    Buzz, I haven't been in your situation, but I urge you to write down EVERY question you have. If at the next appointment your doctor isn't willing to listen to and answer every one of your questions, get another doctor. You're paying him/her thousands of dollars for this, and you absolutely have the right to a doctor who will be worth every penny.
     
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  16. professordeb

    professordeb Well-Known Member

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    I had a total hysterectomy when I was in my early/mid 40's which was about 10-12 years ago.

    It started with removing a cyst about 15 years ago which fortunately for me was well after I had my children. Then my body began to let me down. My cycles went from lasting 27-29 days and bleeding about 4-5 days to a cycle of 22-23 days, bleeding for 9-11 days. I had a lot of pain during my periods and during ovulation. Having pain during the period was normal for me but the ovulation was something new. Finally my family doctor sent me to a OB/GYN (mine had retired by this time) and we agreed to do a scope and see what was what. Well the what was a cyst -- relatively small in size compared to most of you. Normally he would puncture a cyst (like we did my previous one) and remove the liquid. Well this cyst was filled with material that was very thick and murky. After telling me what he found and with me telling him more about my shorted, pain filled and increasing # of days of flow, we agreed to remove the offending fallopian tube and the uterus and then after further discussion, we decided to remove the other fallopian tube since there was a good chance that I would have more cysts show up (all the females in my family suffer from cysts). Sounded logical to me so we went ahead and did the operation. The only drawback was that he thought I was a bit young to be undergoing a complete removal but I told him I had no problem doing so. My one sister had her "plumbing" removed when she was in her 30's and I certainly wasn't going to have any more children.

    The surgery went well as did the healing. Just about the best thing I've ever done for my health. I also loved that I didn't have to put up with having a period any longer. FREEDOM!!!!

    And I agree with LilJen -- write down your questions --- and make sure you have an extra copy. I say that because when I bring a list to my family physician, he sometimes keeps my list.

    I wish you well in whatever choice you make. Do what you believe is best for YOU and I believe it will work out.
     
  17. taf2002

    taf2002 flower lady

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    Buzz, I urge you to get a second & maybe a third opinion. And if you do go ahead with the surgery, you absolutely need (if possible) to keep your ovaries & your cervix. It's more trouble for the doctor to keep your cervix but it can make a lot of difference for your sex life. Hormone replacement therapy helps but doesn't do nearly as good a job as the hormones you get from your ovaries.

    At the risk of being pushy I would recommend that you find another OB/GYN. IMO the current one has disqualified himself by his lack of completely discussing this with you. He sounds like the "I am God so take what I say without asking questions" type. I had my hysterectomy on an emergency basis - I went in for an etopic pregnancy removal & woke up with everything gone. My doctor could never satisfactorily explain why he took my one working ovary.
     
  18. my little pony

    my little pony snarking for AZE

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    i ended up getting addl opinions as the gyn would only recommend the one he got paid for. at first, it seemed like an added annoyance. but the other doctors explained all the options so much better that it was definitely worthwhile.
     
  19. snoopy

    snoopy Team St. Petersburg

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    This is mostly OT and an OT snark at that, but being an informed consumer is a freakin’ lot of work. Embolization – PVC injections into your body, myomectomy, robotic assisted laproscopic surgery, etc. etc. And researching about my medical options was less taxing than researching about my window replacement options a couple of months ago. Fiberglass, Vinyl, Low E2 coatings, argon gas……gah! The worst part is the experts, including the doctors, are not unbiased so you have to add that into the decision.
     
  20. Buzz

    Buzz Well-Known Member

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    The doctor I saw was a specialist in cancers not women's issues so I am gonna get a second opinion from an Gynecologist OBG/YN hopefully someone who specializes in minimally invasive proceeders. Hopefully a new doctor will take time to explain everything and claim my fears and be willing to wait a couple months before doing the surgery. Right now is a rrrrreally bad time to be off work for 6-8 weeks. And I am gonna prepare a list of questions, and thankfully because of OHIP I will have very little out of pocket expenses.
     
  21. KCC

    KCC Active Member

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    I had coconut sized fibroids in 1996 at age 34 and because of intense pain and bleeding, had a hysterectomy but kept the ovaries. I never wanted to get pregnant and loved the idea of no more periods (heavy into camping, rafting and lots of other multi-day outdoor activities) so the decision was fairly easy for me. Had the belly cut procedure and remember taking a hospital pillow with me upon discharge because otherwise the seatbelt would hit right at the incision. Never regretted it.
     
  22. dbell1

    dbell1 Well-Known Member

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    I'm coming up on year 5 of my hysterectomy anniversary. Best thing I ever did. My uterus was grapefruit sized, I had tons of fibroids, cervical cancer (stage 1A1) and cystic ovaries (including a right one that kept disappearing during scans). I bled so much and so heavily that I was anemic. I had a 12 year old at the time and I didn't want any more. (Discussed it with the then bf.)

    My regular doctor's office referred me to an amazing gynecologist, who ran the local hospital's maternity ward. He was patient, went over and above for tests (and everything came back quicker because of who he was). When my colposcopy of '2 or 3 samples max' turned into 7 samples, I knew there was a problem. I started taking lists of questions into my doctor. One day I said 'we're talking before I'm in stirrups'. :lol: And we went through every question I had. If your doctor won't take the time to talk to you, get another one. I was referred to the cancer specialist. From the first appointment, I was positive he was the perfect doctor. My only request before the surgery was to 'gut me'. I wanted everything gone. 8 hours later I woke up with a 'zipper scar' - I totally forgot to discuss exactly where the incision was to be. Oops. I went on Premarin, but weaned myself off because of the breast cancer link. Being slammed into menopause was not fun, but having the cancer out, and the heavy periods and pain gone was a blessing.

    The website that saved my sanity was www.hystersisters.com Whatever you've got, other people have had it and been through it. Every kind of diagnosis or surgery is discussed there. You'll find threads and articles talking about options all the way through months later checkups and health checks. It's funny, I just read through my thread over there. Post op, I was a mess!
     
  23. Wiery

    Wiery Well-Known Member

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    Thanks for the thread, it has been very helpful! Basically, it has helped me see the future since I am having fibroid/ bleeding issues. I will also check out hyster-sisters.
     
  24. agalisgv

    agalisgv Well-Known Member

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    Just curious, but what else is associated with menopause besides period cessation? I've heard many women say it's no picnic to go through menopause abruptly after a hysterectomy, but not sure what they are referring to.
     
  25. snoopy

    snoopy Team St. Petersburg

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    If the ovaries are removed as part of the procedure, there is a sudden cessation of reproductive hormones – rather than a gradual tapering off as in natural menopause. I guess this impacts mood, sexual function and other hormonally driven things. I don’t think they know exactly what hormones impact but it is more than whatever they thought 30 years ago when all the reproductive parts were just yanked out automatically.
     
  26. aliceanne

    aliceanne Well-Known Member

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    I don't know if you need a hysterectomy or not, but you definitely need a better surgeon. The one you have hasn't convinced you that it is your best option and doesn't seem to care either. I would worry where else they cut corners to save themselves bother. A good surgeon will want you to be a willing participant not stressed out or ambivalent about following instructions.
     
  27. taf2002

    taf2002 flower lady

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    My experience may not be typical but since I was pregnant (etopic) at the time of my hysterectomy, I basically "crashed & burned". The sudden cessation of hormones right after being high on pregnancy hormones was unlike anything I have ever experienced. It would not be an exaggeration to say I lost almost 10 years of my life. I had night sweats, hot flashes, mood swings, & extreme depression. I actually looked forward to my death & considered suicide. Strangely, I was functional in that I continued to work every day but a lot of it was going thru the motions. At one point my mother told me about a friend of hers who had tried to kill herself & the doctors subsequently discovered that her hormone replacement dose was wrong. It was the first time I realized that maybe there was medicinal help for me. After some more trial & error my dosage was adjusted & I started feeling better. Of course (Murphey's Law) soon thereafter I got breast cancer & had to give up my HRT. I still have hot flashes & night sweats even though I am now long past the age of regular menopause.
     
  28. PRlady

    PRlady Smoking

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    I still get "morning flashes" - I wake up hot every morning - nine years in, but that's about it. Of course I am still on the lowest dose HRT patch.
     
  29. Buzz

    Buzz Well-Known Member

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    Asked my GP today to refer me to someone else and she is not too happy with me right now and says the diagnosis could be the same but will do it anyway. Told her if the diagnosis is the same then I will go through with it but I at least want someone who will talk to me.
     
  30. skatesindreams

    skatesindreams Well-Known Member

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    I believe you want someone who will talk with you.
     
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