Having major surgery Nov 3 - please send thoughts of healing @ 12:30 PM EST!

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I've spent 15 years trying to get to menopause without having a hysterectomy due to my very large uterine fibroids, but I am almost 56 and there is no sign of menopause yet. (The decreased levels of estrogen would shrink the fibroids.) I am a veteran and get my health care through the VA. I've no complaints with them for regular medical issues, but over the years have found them sorely lacking when it comes to female-specific issues.

After 2 or 3 denials, I was granted a Community Care referral to Mass General Hospital in Boston. Last March, my fibroid specialist at MGH expressed confidence that she could "bridge" me to menopause with a 6 month course of Lupron, an anti estrogen. Unfortunately, instead of the fibroids shrinking 50%, my uterus instead grew 4 cm, which technically brings me up to a 9 month pregnancy uterus, although my alien baby bump is visually more like 4 months. That growth and the crazy bleeding which should not have occurred at all while on Lupron alarmed her, and she referred me to a GYN oncologist. There is no pre-surgery test for the type of cancer I might have.

Despite fighting a hysterectomy all this time, I have now accepted that it is medically necessary.

Because my uterus is so large, nothing minimally invasive is possible, and this will be an abdominal hysterectomy with a vertical incision starting above my belly button, as the largest fibroid lives between my belly button and my diaphragm.

Interestingly, my uterus has gone back down 4 cm since my brother, who has been verbally abusive to me and my partner since April, moved out 4 days ago.

I'm reading Peggy Huddleston's "Prepare for Surgery, Heal Faster: A Guide of Mind-Body Techniques" and finding it very helpful.

Please send thoughts of healing Nov 3 @ 12:30 PM EST! I'm an atheist, but prayers are welcome too :blush:
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Replies

  • AnnPT77
    AnnPT77 Posts: 32,070 Member
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    I'm beaming virtual hugs and healing rays your way, @kshama2001, plus hopes for the best possible post-surgery pathology report. Let us know how you're doing when you feel up to it, OK?
  • snowflake954
    snowflake954 Posts: 8,400 Member
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    Wishing you all the best hon. I will send prayers your way. Stay strong.
  • kharpole8
    kharpole8 Posts: 1 Member
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    @kshama2001, have you had pain during all of your health challenges mentioned? The reason I ask is that I struggled from the time I was a young teenager with excessive bleeding during menstrual cycles and went on through the years having all kinds of tests done. The pain I had in my thirties and leading into my forties was so bad, I finally had a partial hysterectomy in 2003. However, (at least up to 2003, and prior to my surgery, my specialists said the condition could be adenomyosis but it cannot be confirmed until they remove the uterus. Now I don't know if you've ever heard of adenomyosis but it had never come up in all my years of dealing with this. The uterus becomes engorged with blood increasing it's size and therefore cannot contract when you're having pain so there's no relief. Please keep this in mind as another possibility. Sending love, light and prayers. Take good care!
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    Thanks Ann and snowflake!
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    kharpole8 wrote: »
    @kshama2001, have you had pain during all of your health challenges mentioned? The reason I ask is that I struggled from the time I was a young teenager with excessive bleeding during menstrual cycles and went on through the years having all kinds of tests done. The pain I had in my thirties and leading into my forties was so bad, I finally had a partial hysterectomy in 2003. However, (at least up to 2003, and prior to my surgery, my specialists said the condition could be adenomyosis but it cannot be confirmed until they remove the uterus. Now I don't know if you've ever heard of adenomyosis but it had never come up in all my years of dealing with this. The uterus becomes engorged with blood increasing it's size and therefore cannot contract when you're having pain so there's no relief. Please keep this in mind as another possibility. Sending love, light and prayers. Take good care!

    Essentially no pain throughout my whole womanhood. However I wonder if part of my excessive bleeding was due to my uterus being unable to contract.

  • Alltreesgrow
    Alltreesgrow Posts: 8 Member
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    I would like you to know that you are the focus of all our family's best wishes and positive thoughts. you are in good hands I am sure.




  • ythannah
    ythannah Posts: 4,365 Member
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    What you've been dealing with sounds very miserable and I hope, in addition to having speedy healing, you're happy with the results of the surgery. Will keep you in my thoughts.

    Partial hysterectomy (uterus and cervix) here at age 33 due to excessive bleeding but I was able to have the minimally-invasive vaginal surgery so it was rather a walk in the park. It was one of the best health care decisions I ever made.

    A good friend had a very large fibroid also and an abdominal-incision hysterectomy. She was thrilled with it.
  • ChickenKillerPuppy
    ChickenKillerPuppy Posts: 297 Member
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    Thinking of you and wishing you a speedy recovery!
  • cmriverside
    cmriverside Posts: 33,944 Member
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    Sending positive thoughts and prayers for you and your medical team. :flowerforyou:
  • navychickpensfan
    navychickpensfan Posts: 25 Member
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    Sending positive thoughts! I had a 16 cm massive fibroid taken out by a GYN Oncologist with the same surgery you are having. I went with the GYN Oncologist just in case of cancer. My fibroid grew really fast. I had everything removed except for my ovaries. It was reassuring to know that most fibroids are not cancer. The surgery was worth it and I felt much better a few weeks after. I no long had the fibroid pushing on my bladder. Five years later I am still not in menopause!
  • ahoy_m8
    ahoy_m8 Posts: 3,052 Member
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    Sending healing thoughts and energy your way! I hope it's the best possibly outcome for the circumstances (not cancer) and that menopause is yours soon.
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    Sending positive thoughts! I had a 16 cm massive fibroid taken out by a GYN Oncologist with the same surgery you are having. I went with the GYN Oncologist just in case of cancer. My fibroid grew really fast. I had everything removed except for my ovaries. It was reassuring to know that most fibroids are not cancer. The surgery was worth it and I felt much better a few weeks after. I no long had the fibroid pushing on my bladder. Five years later I am still not in menopause!

    @navychickpensfan I know, my life currently revolves around my tiny bladder and I'm trying to imagine not having to go through that anymore :lol:

    I'm hopeful it's not cancer but am very happy with my doctor's qualifications in case it is.

    I'd like to hear more details about your recovery. For example, after week X you were able to do Y, etc.
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    Thanks everyone :blush: crazy busy today. Off for my COVID test.
  • BarbaraHelen2013
    BarbaraHelen2013 Posts: 1,940 Member
    edited October 2022
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    I had a TAH, plus removal of ovaries and cervix 10 years ago due to fibroids, I had what the surgeon said was a 20 week uterine size and he did warn me he may have to do the vertical incision surgery, Fortunately he decided to do the more standard hip bone to hip bone horizontal incision, which heals easier than the vertical cut. Staples were removed on the Saturday and, quite honestly, that was the worst part of the entire experience.

    Operation was on a Monday and I begged to be allowed up to shower the following morning, was home and ambulatory by Thursday morning. Recovery to a ‘managing daily life’ level was pretty quick, although it took a few months before i felt fully recovered.

    My Mum died a week after my surgery and I was well enough to travel via train the 300 miles to sort arrangements and attend the funeral. So that was a timescale of about 2 weeks and I was up to that (although I didn’t get out of the car to push the hearse when it got stuck in snow, obviously! 😂)

    I was cleared to drive after 5 weeks. All bladder and bowel issues were absolutely resolved, which I hadn’t necessarily expected, but that was a bonus!

    It was standard practice at that private hospital to administer an epidural after the surgery before the anaesthetic was withdrawn to help with the immediate pain when waking up and for the first few hours. I declined this as I’ve always been squeamish about things going into my spine. If I had to do it again I’d take that epidural in a heartbeat…so I’d advise if the option is there, go with it!

    I wish you the best and a speedy recovery. My surgeon said at my 6 week checkup that a positive state of mind is a huge part of how well you heal and how quickly you get back to normal life.
  • debtay123
    debtay123 Posts: 1,327 Member
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    I will be praying and hoping for a complete healing! ALL the best! Please let us know how you came out after surgery
  • Courtscan2
    Courtscan2 Posts: 498 Member
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    Best wishes for a safe procedure, and speedy recovery! Both my mom and sister had to have this done, and both are doing extremely well now. My sister was only 39, and had a 6 month old fetus sized uterus. She's thrilled she no longer gets periods, and is soooo much happier with her body in general now. Despite the scar!
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    I had a TAH, plus removal of ovaries and cervix 10 years ago due to fibroids, I had what the surgeon said was a 20 week uterine size and he did warn me he may have to do the vertical incision surgery, Fortunately he decided to do the more standard hip bone to hip bone horizontal incision, which heals easier than the vertical cut. Staples were removed on the Saturday and, quite honestly, that was the worst part of the entire experience.

    Operation was on a Monday and I begged to be allowed up to shower the following morning, was home and ambulatory by Thursday morning. Recovery to a ‘managing daily life’ level was pretty quick, although it took a few months before i felt fully recovered.

    My Mum died a week after my surgery and I was well enough to travel via train the 300 miles to sort arrangements and attend the funeral. So that was a timescale of about 2 weeks and I was up to that (although I didn’t get out of the car to push the hearse when it got stuck in snow, obviously! 😂)

    I was cleared to drive after 5 weeks. All bladder and bowel issues were absolutely resolved, which I hadn’t necessarily expected, but that was a bonus!

    It was standard practice at that private hospital to administer an epidural after the surgery before the anaesthetic was withdrawn to help with the immediate pain when waking up and for the first few hours. I declined this as I’ve always been squeamish about things going into my spine. If I had to do it again I’d take that epidural in a heartbeat…so I’d advise if the option is there, go with it!

    I wish you the best and a speedy recovery. My surgeon said at my 6 week checkup that a positive state of mind is a huge part of how well you heal and how quickly you get back to normal life.

    LOL at pushing the hearse!

    We will have the house to ourselves over Thanksgiving and for a minute I thought about hosting instead of going to friends...and quickly thought better of it. :smiley:

    There's been no mention of an epidural. Apparently I'm getting a pain pump thingy initially.

    I've been reading Peggy Huddleston's "Prepare for Surgery, Heal Faster: A Guide of Mind-Body Techniques" and doing the relaxation exercises from the CD. It's supposed to be an active exercise, where you are actively visualizing healing goals. I keep falling asleep though. Once or twice I've been vaguely aware of the healing goals part, but it's towards the end, and mostly I sleep through it :lol:
  • AnnPT77
    AnnPT77 Posts: 32,070 Member
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    kshama2001 wrote: »
    I had a TAH, plus removal of ovaries and cervix 10 years ago due to fibroids, I had what the surgeon said was a 20 week uterine size and he did warn me he may have to do the vertical incision surgery, Fortunately he decided to do the more standard hip bone to hip bone horizontal incision, which heals easier than the vertical cut. Staples were removed on the Saturday and, quite honestly, that was the worst part of the entire experience.

    Operation was on a Monday and I begged to be allowed up to shower the following morning, was home and ambulatory by Thursday morning. Recovery to a ‘managing daily life’ level was pretty quick, although it took a few months before i felt fully recovered.

    My Mum died a week after my surgery and I was well enough to travel via train the 300 miles to sort arrangements and attend the funeral. So that was a timescale of about 2 weeks and I was up to that (although I didn’t get out of the car to push the hearse when it got stuck in snow, obviously! 😂)

    I was cleared to drive after 5 weeks. All bladder and bowel issues were absolutely resolved, which I hadn’t necessarily expected, but that was a bonus!

    It was standard practice at that private hospital to administer an epidural after the surgery before the anaesthetic was withdrawn to help with the immediate pain when waking up and for the first few hours. I declined this as I’ve always been squeamish about things going into my spine. If I had to do it again I’d take that epidural in a heartbeat…so I’d advise if the option is there, go with it!

    I wish you the best and a speedy recovery. My surgeon said at my 6 week checkup that a positive state of mind is a huge part of how well you heal and how quickly you get back to normal life.

    LOL at pushing the hearse!

    We will have the house to ourselves over Thanksgiving and for a minute I thought about hosting instead of going to friends...and quickly thought better of it. :smiley:

    There's been no mention of an epidural. Apparently I'm getting a pain pump thingy initially.

    I've been reading Peggy Huddleston's "Prepare for Surgery, Heal Faster: A Guide of Mind-Body Techniques" and doing the relaxation exercises from the CD. It's supposed to be an active exercise, where you are actively visualizing healing goals. I keep falling asleep though. Once or twice I've been vaguely aware of the healing goals part, but it's towards the end, and mostly I sleep through it :lol:

    May not matter - may still have an effect? When I did hypnotherapy, took the recorded sessions home to repeat daily, the psychologist told me not to worry if I fell asleep along the way, that it was still sinking in subconsciously. I grant, it was a different goal than healing, though.
  • BarbaraHelen2013
    BarbaraHelen2013 Posts: 1,940 Member
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    Something I didn’t mention…I was advised to get out every day for a *short* walk…and by short they said they meant to the nearest lamp post or something similar. I did this, with my daughter for support as soon as I got home, increasing the distance slightly (a few yards) every day. I do feel this helped a lot. Surgeon was surprised to see me walking totally upright at the 3 week checkup. He said most people are still walking bent over at that point.

    Point is, don’t be afraid to move, take it slowly and do not push yourself beyond what feels doable, but definitely get mobile as soon as you can.

    Also, perfect the ‘internal post hysterectomy sneeze’ 😂 You very quickly learn how to do this after sneezing normally once! Ouch!
  • kshama2001
    kshama2001 Posts: 27,897 Member
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    Something I didn’t mention…I was advised to get out every day for a *short* walk…and by short they said they meant to the nearest lamp post or something similar. I did this, with my daughter for support as soon as I got home, increasing the distance slightly (a few yards) every day. I do feel this helped a lot. Surgeon was surprised to see me walking totally upright at the 3 week checkup. He said most people are still walking bent over at that point.

    Point is, don’t be afraid to move, take it slowly and do not push yourself beyond what feels doable, but definitely get mobile as soon as you can.

    Also, perfect the ‘internal post hysterectomy sneeze’ 😂 You very quickly learn how to do this after sneezing normally once! Ouch!

    Yep, my pamphlet says they want me to be doing walks in the hallway the day after surgery and that is one of the healing goals I've been visualizing, as is a hefty hike as a much farther in the future goal.

    I'll make the bolded an in between goal :smile:

    Note to self - NO SNEEZING!