hysterectomy? [update!]

mods: please please please don't move this to health & support!  i don't need the input of a bunch of skinny teenagers; i'm looking for grown-up women!

i'm thinking about having a hysterectomy and want to hear the experiences--good and bad--of my adult friends here.

i'm not going to do anything for at least a year, because it's just not the right time to fall apart (in case i do).  but i have massive fibroids that can't be removed non-invasively.  my periods are not painful, but they are extremely heavy and long, and my cycle is short.  you know that rule about going to emergency if you're going through more than one tampon an hour?  yeah, that's me two days out of every 23 (no, i don't go to emergency). 

i'm tired of being iron depleted and i'm tired of having a grapefruit in my belly.  but i'm not sure i'm ready for the emotional and hormonal trauma.  any input is appreciated.

oh yeah - i'm 40, no kids.

you dont have to do a radical hysterectomy for fibroids, you can leave the ovaries which should negate most of the hormonal effects (unless there is any history of ovarian cancer/breast cancer, they might want to take them too)

They can do hysterectomies now through the vagina, leaving minimal scaring and getting you up and at em a lot more quickly.  This is called LAVH (laproscopically assisted vaginal hysterectomy).  You may or may not be a candidate b/c of the fibroids. 

Also, at your age, there is a general consensus that a year or two of hormones is appropriate as your body would have been making them anyway.  It is after you should have "normally" stopped that it becomes hazardous.  If you keep the ovaries, no worries here.

Have you looked into having a d and c and abalation (sp) while you think about the hysterectomy?

thanks, drea.

my mother has had both ovarian and breast cancer, so my obgyn has basically said i should have a hysterectomy; just a question of when.

i had a d & c and ablation in nov. '07.  it didn't accomplish much (well, they established that i don't have cervical or uterine cancer, so that's a good thing).  the fibroid(s) is (are) outside the uterus, so they couldn't access it that way.

i'm not worried about the physical effects of the surgery.  i've been under general anesthetic several times and have never had a problem, and i bounce back fast from most things.  i'm more concerned about what's going to happen to my brain ;)

You arent a candidate for hormones with the family history of cancer.  And ur dr is right-- get it out.  How old was mom when dx?  You said "has had" so I presume she has weathered treatment and is on the positive side of the very dire ovarian cancer stats?

Dont ask me about what will happen to your brain, I think you are nuts as it is :)

Really though, every woman has a different experience with the sudden onset of menopause with the surgery...but I will hush and let people with actual experience talk...

Any chance they could take the uterus and leave the ovaries, meaning no subsequent hormonal imbalances? Have you been tested for the brca genes - if negative, maybe they could leave the ovaries?

Emotional trauma depends on how you feel about your uterus. Obviously it would mean giving up any chance of having biological children, but I think you are grappling/have grappled with that already, no? Hysterectomy would make it more permanent, however, so be very very sure that you are reasonably far along that road to being OK with it, or you could be in for a nasty shock. It's instinctual and we can often underestimate the intensity of feeling.

I know some women claim that they feel, afterwards, like "less of a woman" - but you're smart enough to know that your uterus does not determine your gender (it would be emotionally harder to lose breasts and/or ovaries, I suspect...). The point is you have gotten through a lot in your life and you could get through this.

I am sure you have already done this, but a pro-con list would help. the things you would gain, the things you would lose. Every possible ramification either way.

Haven't had a hysterectomy myself, obviously, but face the no-kids-yet dilemma myself every day... Good luck, my friend.

drea: yeah, my mom is still alive.  no uterus or ovaries and only one breast, in a wheelchair as a result of a stroke, and being treated for carcinoid tumours, but alive.

but she was well into her 60s before being diagnosed with any cancer, and she smoked for 50+ years, so it's not too dire for me.

trust, i'm still grappling.  i might have finished grappling, but then my crazy cousin had her first at 45.  part of me can't help thinking that if she can do it (and by all accounts she's doing it well and the child is perfectly healthy), i can do it.  yeah, i'm definitely not there yet....

You are getting regular check ups and such right though? Ovarian cancer usually has very few discernible symptoms...

Have you looked into ART?  Unfortunately, with your family history, the very medications that can help you get pregnant and stay pregnant could assist an errant cancer cells in taking hold.... even pregnancy could be a factor.  They are able now, however, to harvest immature oocytes (which I presume does not require the hormonal intervention that typical egg retrievals do).  This still wouldnt obviate the desire to carry a pregnancy though.

Have you discussed this with ur dr?  How will the fibroids come into play if you were able to get pregnant?

(And even cuz Cuz can.... getting preg after 40 is a crap shoot)

edit: gosh your poor mom. 

drea, i know 40 is old, okay?  not under any illusions here.

and i'm overdue for a check-up, but not by much.  i have talked to my dr, but not in depth.  it wasn't something that i was ready consider, especially while still in school.  but now that i'm getting close to graduation, i'm thinking more seriously about it.

part of my dilemma is that--other than heavy bleeding--my uterus isn't causing me any problems.  so removing it amounts to a cosmetic thing; like i said, i have a grapefruit in my belly, and it shows.  i'm conflicted about trading my chance to have a child--slim though it may be--for the possibility of a flat belly.

and, honestly, i know i can look at the cancer risk and make the decision, but it would be a rationalization for the cosmetic benefit.

Original Post by pgeorgian:

drea: yeah, my mom is still alive.  no uterus or ovaries and only one breast, in a wheelchair as a result of a stroke, and being treated for carcinoid tumours, but alive.

but she was well into her 60s before being diagnosed with any cancer, and she smoked for 50+ years, so it's not too dire for me.

trust, i'm still grappling.  i might have finished grappling, but then my crazy cousin had her first at 45.  part of me can't help thinking that if she can do it (and by all accounts she's doing it well and the child is perfectly healthy), i can do it.  yeah, i'm definitely not there yet....

Then don't do it until you are there, IMHO. Honestly, the only downside to waiting is feeling physically bad (which can be fixed at any time by having the surgery, should you change your mind) whereas the downside to charging ahead is feeling emotionally bad, for something which you can no longer change your mind about.And from what I understand (and fear myself, too) this is the kind of thing that can haunt you for the rest of your days.

If you decide to hold off, at least when you reach natural menopause you won't have the "what if I hadn't done this surgery prematurely" woulda-shoulda feeling. Sure, it means years of too much bleeding (do they have you on the pill, btw? that usually helps) and the grapefruit, but again, you can change your mind and HAVE the surgery in a year or three, but you can't undo it once it's done.

So sorry about your mom. :(  If any other relatives in your family have had breast or ovarian cancer, then do get tested, please - but if it's just her, the odds are that it isn't brca genes but rather due to other factors.

EDIT: just read your subsequent post. If it's more about the belly than the bleeding, then definitely don't do it. Unless and until you have completely let go any thoughts of childbearing, even little parts of you, and your cousin's story doesn't make you feel anything except sorry for her. It's a lot easier (hard as it is, it is easier) to reconcile body image (especially for a woman who is already slender and attractive, as you are) than lost motherhood. You can have your surgery (and your flat belly) once your period stops. Again, just IMO.

Hey Pg-- I wasnt saying you were old!!  Me getting pregnant is a crap shoot too, not age related, so I kinda get it.  I guess my thought is (um its your body so my thoughts dont really count) that you have been talking about this way back when you found out about the fibroids (well over a year now if I remember right, I think closer to 2) that you wanted to have a kid... and that you were seriously concerned about being able to have one due to the issues you were having.

If you want to do it, go for it.  I just wouldnt wait much longer (again, my thoughts, your body, you know that calculus). 

If you are serious about the hysterectomy AND about having a kid-- why not do the fibroid removal now?  Has the dr said it would damage the uterine wall? I dunno.  What a terrible decision to have to make.

trust: yeah, you've nailed it.  i know i'm not ready (if the fact that i teared up at your first post wasn't evidence enough).

drea: it's okay.  in childbearing terms, i am old.  i'm okay with that.  if removing the fibroids were an option, i'd have done it, but my obgyn says it's "not indicated" as long as i'm trying to retain childbearing capability (she says it like i'm trying to retain the capacity for flight).

i'm just processing here.  i'm not making any decisions.

and if i can't carry, i'll be okay with that.  i won't be doing anything medically to promote that; the next option will be international adoption.  but first i have to graduate and get a job ;)

oh - trust - re: the pill.  yeah, tried that; it made it worse.  it stretched my cycle out from 23-24 to 28 days, but instead of bleeding for 7 of them i was bleeding for 12, and it was just as heavy.  oh - and it was painful, which it never is off the pill.  woulda been nice, but...{shrug}.

Could you be a candidate for uterine fibroid embolization?

not as long as i want to cling to the hope of reproducing.

wait - embolization - that's what they tried to do, but because the fibroids were outside the uterus (except for one weeny one), they couldn't do it.

i'm not sure which procedure is embolization and which is ablation.  i had one; i'm not a candidate for the other.

Original Post by pgeorgian:

oh - trust - re: the pill.  yeah, tried that; it made it worse.  it stretched my cycle out from 23-24 to 28 days, but instead of bleeding for 7 of them i was bleeding for 12, and it was just as heavy.  oh - and it was painful, which it never is off the pill.  woulda been nice, but...{shrug}.

depo? mirena? other types of pills? (sometimes you have to experiment until you find the right one).

Yeah, I thought I might be onto something here - it was that time you said you feel it in your womb every time you hold a newborn. You're not ready to give up just yet, hon. *hugs*

Original Post by pgeorgian:

not as long as i want to cling to the hope of reproducing.

wait - embolization - that's what they tried to do, but because the fibroids were outside the uterus (except for one weeny one), they couldn't do it.

i'm not sure which procedure is embolization and which is ablation.  i had one; i'm not a candidate for the other.

Then you would have had ablation, which helps internal ones. But yours are external. (Weird - usually it's the internal ones that make you bleed.)

Not sure why you aren't a candidate for embolization, maybe they can't embolize the fibroid without embolizing the whole uterus. Unfortunate vessel placement or something.

the most recent was ortho-tricyclen lo.  it sucked.

but you know, i'm so well adapted to my periods as they are, three or four months of "trying something new" is just a pain in the ass.

but - you're right.  as usual.  hell - i feel it in my womb when my dog sits in my lap.

Original Post by trustwomen:

Then you would have had ablation, which helps internal ones. But yours are external. (Weird - usually it's the internal ones that make you bleed.)

Not sure why you aren't a candidate for embolization, maybe they can't embolize the fibroid without embolizing the whole uterus. Unfortunate vessel placement or something.

she'd do the embolization if i pushed it, but it can weaken the uterine wall, so it's not indicated unless i'm willing to forego childbearing.  and when i'm ready to do that, it's hysterectomy time.

maybe it's because the one fibroid is so big...they measure these things in terms of how big the uterus would be if it were a pregnancy, and mine is "14 weeks."  and it's considerably bigger in the week before my period.  basically, i'm walking around 4 months pregnant.  no bloody wonder 142 pounds feels fat, hey?

Original Post by pgeorgian:

the most recent was ortho-tricyclen lo.  it sucked.

but you know, i'm so well adapted to my periods as they are, three or four months of "trying something new" is just a pain in the ass.

but - you're right.  as usual.  hell - i feel it in my womb when my dog sits in my lap.

My new cat is currently cuddled up with her head on my arm and one paw wrapped into my elbow. I feel ya.

And I have to give her away because she has increased the allergen load in my house to red-alert status. I am only telling people about this reluctantly because I know someone wonderful, some friend of a friend, will want her and then I'll have to let her go...

But again: body image woes <<< lost-motherhood woes. Hell, I'm only 32 and thinking I might never do it is already more painful than being fat - and I actually am fat (well, moderately overweight). It was always worse to think about the kids thing, even when I was 30 years old and 240 lbs -  it's really a different order of magnitude, this topic.

Maybe for your body image you need to go out and get laid. Always helps me.

Original Post by trustwomen:

My new cat is currently cuddled up with her head on my arm and one paw wrapped into my elbow. I feel ya.

And I have to give her away because she has increased the allergen load in my house to red-alert status. I am only telling people about this reluctantly because I know someone wonderful, some friend of a friend, will want her and then I'll have to let her go...

aw - poor kitty.  poor you.

Original Post by pgeorgian:

Original Post by trustwomen:

My new cat is currently cuddled up with her head on my arm and one paw wrapped into my elbow. I feel ya.

And I have to give her away because she has increased the allergen load in my house to red-alert status. I am only telling people about this reluctantly because I know someone wonderful, some friend of a friend, will want her and then I'll have to let her go...

aw - poor kitty.  poor you.

Eh, we're happy enough in this moment. And she's so lovey-dovey with all comers that she will be happy in any good home. I'll miss her but if it's someone I know, at least I can visit...

I edited my last post after your response! I should just make new posts but I don't want to feel like I'm dominating a thread, you know?