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Greta

If you've had a hysterectomy...

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...I guess my biggest question is, would you make the same decision over again?

 

My situation is that I'm 44 years old, in perimenopause, and I've always had heavy periods, but not like this.  Wearing the biggest tampon (o.b. ultra - if anyone knows of a better one, please tell me!) AND pad (overnight maxi) that I can find, I will bleed through both of them in about two hours.  On my worst days, I have so many accidents that I'm afraid to leave the house.  So I went to my doctor to talk about an ablation.  She said that sounded like a great idea and ordered an ultrasound to make sure all was well.

 

The ultrasound showed a large fibroid tumor right where the uterus and cervix meet.  It's large enough that it's protruding into the endometrium, and because of its size and location, she said an ablation wouldn't really help.  And even though I'm in peri, judging from my hormone levels, she said I will probably have periods for years to come, and there's enough estrogen still in my system to keep the tumor growing.  So she recommended a hysterectomy instead.

 

She referred me to another doctor in her practice who is an experienced GYN surgeon (she doesn't do surgeries herself), and I have a consultation with him in two weeks.  I want to go into that consultation as informed as possible, so that I know the right questions to ask.  I'm reading what I can find online about risks and long-term consequences, but I'd love to hear what you all think as well.  Assuming he agrees with her assessment, should I go for it?

 

Oh, and in case it would matter in your decision, she said they would leave my ovaries so that I'm not sent into a sudden and unnatural menopause and could hopefully avoid HRT (HRT would be unpleasant for me because of my chronic migraines), and that they should be able to do it laporascopically so my recovery wouldn't be too bad.

 

I'm strongly inclined toward doing it, because these periods are fairly life-disrupting.  But I just want a reality check, I guess:  is it crazy to have an organ removed because of heavy periods?  I'm not having any other symptoms such as pelvic pain or bad cramping (yet?).

 

I appreciate any advice!

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Absolutely.

 

I was in pretty much your exact situation about thirteen years ago, when I was around 42. I was also severely anemic. I've had no reason at all to regret the decision to have a hysterectomy. My quality of life improved tremendously. Even though my fibroid was large my doctor was able to do the surgery vaginally, and recovery was a breeze.

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Absolutely.

 

I was in pretty much your exact situation about thirteen years ago, when I was around 42. I was also severely anemic. I've had no reason at all to regret the decision to have a hysterectomy. My quality of life improved tremendously. Even though my fibroid was large my doctor was able to do the surgery vaginally, and recovery was a breeze.

 

 

That's so good to hear!  I'm actually not anemic, which I attribute to the fact that my father has hemochromatosis, so I probably have a higher than average ability to absorb iron.  But if this keeps up, I'm guessing it's just a matter of time.  

 

Thank you for your post!

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Yes! I still have my ovaries and based on other symptoms, they are still functioning. But I no longer have to stay at home one to two weeks a month, because the flow is too heavy to go out, wondering if this would be the day I met the limit set by my doctor and would have to head in to the ER for the excessive bleeding.

 

No more missing work.

No more missing kid activities.

No more anemia.

 

I had an ablation that was successful for a little over 4 years. That was a nice stop gap measure. But I began having other symptoms and turned out like you, having a cluster of large fibroids that were both contributing to excessive bleeding and reducing bladder capacity. I was not incontinent, but had the urge to go all the time.

 

I am very glad I had it done. I do think it's all about the timing - it's a permanent change that you don't want to do prematurely- but after years of heroic performance, there definitely came a time in my life to bid that uterus adieu. FWIW, my ovaries looked good via ultrasound, but I did go into the planned vaginal laparoscopic ovary sparing procedure fully aware that if my ovaries looked decrepit on visual inspection, they would be taken, and that if old scar adhesions posed problems, the procedure could revert to an old fashioned abdominal incision in the OR. I would only know what actually happened upon waking in recovery. So, I cleared my calendar for a full 8 week recovery just in case.

 

All went well and I feel better than I have in years! My doc told me after looking at my uterus that it was definitely a good decision to retire it. Also, she said that since they're learning that a majority of female reproductive cancers actually start in the Fallopian tubes, she'd take those too, and I was fine with that. Don't miss em!

Edited by Seasider
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I have not had one but both my mom and aunt had one in their 40s due to endometriosis. Both said it was the best decision ever.

 

My mom had ovaries removed (she too had chronic migraines) and she took hormones for a while and then tapered off. Surprisingly enough her migraines disappeared after her hysterectomy. She didn't know if they were being caused by her cycle or if it was just age made it better. She is thrilled.

 

My aunt left her ovaries and she too has done great. No regrets.

 

If my own endo gets to the point theirs was at I wouldn't hesitate to do it in a heartbeat.

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Yes! I still have my ovaries and based on other symptoms, they are still functioning. But I no longer have to stay at home one to two weeks a month, because the flow is too heavy to go out, wondering if this would be the day I met the limit set by my doctor and would have to head in to the ER for the excessive bleeding.

 

No more missing work.

No more missing kid activities.

No more anemia.

 

I had an ablation that was successful for a little over 4 years. That was a nice stop gap measure. But I began having other symptoms and turned out like you, having a cluster of large fibroids that were both contributing to excessive bleeding and reducing bladder capacity. I was not incontinent, but had the urge to go all the time.

 

I am very glad I had it done. I do think it's all about the timing - it's a permanent change that you don't want to do prematurely- but after years of heroic performance, there definitely came a time in my life to bid that uterus adieu. FWIW, my ovaries looked good via ultrasound, but I did go into the planned vaginal laparoscopic ovary sparing procedure fully aware that if my ovaries looked decrepit on visual inspection, they would be taken, and that if old scar adhesions posed problems, the procedure could revert to an old fashioned abdominal incision in the OR. I would only know what actually happened upon waking in recovery. So, I cleared my calendar for a full 8 week recovery just in case.

 

All went well and I feel better than I have in years! My doc told me after looking at my uterus that it was definitely a good decision to retire it. Also, she said that since they're learning that a majority of female reproductive cancers actually start in the Fallopian tubes, she'd take those too, and I was fine with that. Don't miss em!

 

 

So glad that you are doing so well now!  And about the reduced bladder capacity - yeah, I've got that going on too.  I forgot to mention it to my doctor, but I assume that it's because of the fibroid.  (Maybe I should mention it to her, because she said my insurance company is kind of a pain, and we'd need a long list of reasons to convince them to pay for the surgery.)  I used to be able to easily make it through the night without having to go to the bathroom, but now not so much.  I'm having to go a lot more frequently during the day, too, though that's generally not a problem since I'm home most of the time.  

 

Thank you so much for your feedback!

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I had a submucosal fibroid that was HUGE. Extremely heavy bleeding and severe pain. I was anemic for years. Couldn’t leave the house for 2 days per month.

 

Had a partial hyst several years ago (left ovaries in place) and have NEVER ONCE regretted it. My life is so much better! And no negative side effects at all (TeA is still great, didn’t gain weight, etc.).

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I have not had one but both my mom and aunt had one in their 40s due to endometriosis. Both said it was the best decision ever.

 

My mom had ovaries removed (she too had chronic migraines) and she took hormones for a while and then tapered off. Surprisingly enough her migraines disappeared after her hysterectomy. She didn't know if they were being caused by her cycle or if it was just age made it better. She is thrilled.

 

My aunt left her ovaries and she too has done great. No regrets.

 

If my own endo gets to the point theirs was at I wouldn't hesitate to do it in a heartbeat.

 

 

Wow, that would be amazing!  I am so glad that happened for her, but I think I probably shouldn't get my hopes up for that.  I'll be happy if it at least doesn't make them worse.

 

Thank you!

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I had a submucosal fibroid that was HUGE. Extremely heavy bleeding and severe pain. I was anemic for years. Couldn’t leave the house for 2 days per month.

 

Had a partial hyst several years ago (left ovaries in place) and have NEVER ONCE regretted it. My life is so much better! And no negative side effects at all (TeA is still great, didn’t gain weight, etc.).

 

 

I had wondered about those things specifically, so that's good to hear!

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If I had gotten that news from the doc, about the fibroid tumor, when I went in to ask about ablation, I'd have scheduled the hysto without a second thought.

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I haven't had a hysterectomy, but I've talked about it with my doctor, who is also a good friend of mine. One thing she told me that gives me pause is that because the uterus provides support for the rest of the pelvic structure, removing it puts women at higher risk of bladder prolapse and vaginal vault prolapse down the road. More surgery is then required and it can be tricky and complicated to repair those issues. Just wanted to mention that because she said that many doctors don't tell women about the increased risk, and then they are caught by surprise when it happens.

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I haven't had a hysterectomy, but I've talked about it with my doctor, who is also a good friend of mine. One thing she told me that gives me pause is that because the uterus provides support for the rest of the pelvic structure, removing it puts women at higher risk of bladder prolapse and vaginal vault prolapse down the road. More surgery is then required and it can be tricky and complicated to repair those issues. Just wanted to mention that because she said that many doctors don't tell women about the increased risk, and then they are caught by surprise when it happens.

 

 

I appreciate you pointing this out, Selkie.  My doctor didn't mention this, so I will ask the surgeon about it at the consultation, and do some more reading online as well.  

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100% I would make the same decision again (I had mine due to a severe uterine prolapse).

 

I haven't had a hysterectomy, but I've talked about it with my doctor, who is also a good friend of mine. One thing she told me that gives me pause is that because the uterus provides support for the rest of the pelvic structure, removing it puts women at higher risk of bladder prolapse and vaginal vault prolapse down the road. More surgery is then required and it can be tricky and complicated to repair those issues. Just wanted to mention that because she said that many doctors don't tell women about the increased risk, and then they are caught by surprise when it happens.

 

My surgeon is a specialist in pelvic floor surgeries so she did tell me about those risks.  I am at extra risk of further prolapse because my hysterectomy was due to one in the first place (also did a rectal repair and bladder repair - my bladder was totally out of place before the surgery).  The first doctor I saw basically said future prolapse would be a thing (not if, but when) and I'd have to see someone else to get those fixed because she wasn't trained to do them.  When I switched to the one who did my surgery, she made a list of all the things she would do to prevent future prolapse.  They were standard for her to do and her long-term outcomes are excellent.  So I would be very careful to choose a surgeon who is very experienced and will take the time to help prevent future complications/prolapses.

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I had a full hysterectomy, with ovaries removed. For me, I feel like I just exchanged one set of problems for another. Yes, the reasons why I had the hysterectomy in the first place are gone, and I'm grateful, but I feel like my hysterectomy has really taken a toll on my life. It has really aged me, and hormonally I'm a wreck. I've had difficulty finding HRT that works for me.

 

However, if you keep your ovaries, I think that your outcome will probably be much better, and your quality of life will improve. Just realize that this is a major surgery and give yourself plenty of time for recovery.

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I was 37. I was very concerned based on things that I had read, so I also asked people here too  :lol: . But, I am very glad i did it. My issues were related to endometriosis and what turned out to be adenomyosis. I was concerned about changes regarding desire for/during TeA. I am happy to say that there were only positive changes in that dept.  ;)

 

 

ETA: my ovaries were not removed. I think that makes the biggest difference in outcomes.

Edited by jewellsmommy
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1. You could check with someone - most likely a naturopath - who may work with you on reducing the fibroid with increased progesterone unless you have already tried that.

 

2. I had little choice since my endo had overtaken everything but no regrets. The best 10 years of my life.

If you have everything taken out - including ovaries - bio-identical HRT has helped me. Find a surgeon who specializes in this type of surgery even if you have to travel and if it's inconvenient. Dh and I drove about 3 hours one way and it was very worth it.

After I ended up in this situation I switched to a naturopath as primary care doc. So some of my suggestions reflect this. 

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I had a full hysterectomy, with ovaries removed. For me, I feel like I just exchanged one set of problems for another. Yes, the reasons why I had the hysterectomy in the first place are gone, and I'm grateful, but I feel like my hysterectomy has really taken a toll on my life. It has really aged me, and hormonally I'm a wreck. I've had difficulty finding HRT that works for me.

 

However, if you keep your ovaries, I think that your outcome will probably be much better, and your quality of life will improve. Just realize that this is a major surgery and give yourself plenty of time for recovery.

 

 

I am sorry to hear that. That's difficult. Have you tried the bio-identical stuff? 

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I had a full hyst (abdominal incision) at 45 and if you like, Greta, you can PM me for details but I will say this...

 

BEST. DECISION. EVER.

 

:)

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I had one a few years ago due to fibroids and a benign cyst. I had periods like you described for a few years. The doctor left one ovary.

It was one of the best things I’ve ever done. Swear to god, I wish I’d had it done 5 years earlier. A week of soreness, a bit of tiredness while walking, and that was it.

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I had a full hyst (abdominal incision) at 45 and if you like, Greta, you can PM me for details but I will say this...

 

BEST. DECISION. EVER.

 

:)

 

Ditto! Regretted not doing it years earlier.  

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Thank you all so much for the help.  I really appreciate every reply.  I do intend to ask about organ prolapse, but overall I am feeling much more optimistic about things.  

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I had a full hysterectomy due to the brca gene 8 years ago. I will be honest - I have had mixed results, but my troubles come from lack of ovaries. Fibroids run in my family (I had two removed before my hysterectomy and another one in there when I had my hyst). Both my aunt and my mom had hysts for fibroids. Both say their lives got better after their surgeries. My aunt did have a complication because they accidentally did something to the bladder, but a second surgery corrected it quickly.

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Only regret is that I suffered so long! I should have done it earlier. I was 42 and I am 50 now.

 

I will say menopause sucks (I kept one ovary), but as far as I can tell it sucks for everyone!

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I am still recovering from mine. It was 6 weeks ago today.

I had a tumor on my ovary that had to come out, so it really wasn’t a choice. After the surgery, lab work showed that there were other issues we were not aware of. So hopefully I will feel really amazing once I am recovered. The recovery process has been so long and so slow though.

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I am still recovering from mine. It was 6 weeks ago today.

I had a tumor on my ovary that had to come out, so it really wasn’t a choice. After the surgery, lab work showed that there were other issues we were not aware of. So hopefully I will feel really amazing once I am recovered. The recovery process has been so long and so slow though.

 

 

I'm sorry that your recovery is going slowly, Jess.  I sure hope you feel better soon.  :grouphug:

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Yep, been there, did that, and wish I had done it sooner.  

Heavy periods, serious PMS.  I had cysts over the years, fibroids, and PCOS.  And the endometriosis.  My female parts were a mess.  

I had a Dr tell me about her hysterectomy and how happy she was.  I met her OB Dr and this Dr agreed it needed to be done.  Left my ovaries.  Supposedly my cervix according to records but no Dr has been able to see one at check ups LOL.   I haven't had any sudden menopause.  My kids were younger and it was a hard 8 weeks of no driving, but in hindsight I'm glad I did it.    I did have random bleeding for half a year.  During s*x for over a year.  Eventually it stopped.  But the pain and heavy bleeding are over!  I feel so much better now.  The recovery was painful.  Definitely don't drive for 8 weeks.  It's so easy to hurt yourself if you push it sooner.  My kids watched a lot of tv those weeks.  They ate a lot of cereal and sandwiches they made for themselves. It's worth the effort to do the surgery.  

 

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Ok I have no BTDT, but I recall being warned against the practice of morcellation.  So I recommend googling that...

 

Pretty sure no one does this anymore.

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Ok I have no BTDT, but I recall being warned against the practice of morcellation.  So I recommend googling that...

Sometimes they still do it.  It's an issue when there is cancer in the uterus.  The morcellation allows the cancer cells to "escape" and spread.

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Sometimes they still do it.  It's an issue when there is cancer in the uterus.  The morcellation allows the cancer cells to "escape" and spread.

 

Yeah I would say no...cancer or no cancer.  Just seems like too much of a risk.

 

Seems they now often do something where they contain it in a bag.  That's not perfect either though.

 

But from what I read, this is a risk any which way (spreading cancerous cells). 

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Yeah I would say no...cancer or no cancer.  Just seems like too much of a risk.

Definitely... since sometimes they don't think it's cancer and it turns out to be or there's cancer just starting but not detected yet.  I'd opt for vaginal if they were going to do a morcellation (actually I'd opt for vaginal if possible no matter what).

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