Hysterectomy: A lifechanging event?

[Pamela H in Texas]

Okay, doc and I talked about several different things and I had some testing and and and....

 

But I have talked to several women who have said that having a hysterectomy, especially at the time they were as miserable as I am, was a life changing event and if they had it to do over they would have done it at _____ (age, usually the age they had their last child).

 

Does anyone here feel that way? Anyone have one and NOT feel that way?

I was actually scheduled for a hysterectomy 16 years ago. Doctor and I both chickened out, mostly because of my age and mental state about it. Through the years, I hung on thinking that this stupid uterus DID give me 2 kids despite the odds, maybe it could do it again. I'm past that. The chances are slim to none (reproductive endocrinologist thinks I *may* be able to get pregnant with IVF but because of how my uterus is, we can implant only one at a time. I have a HUGE issue with the idea of "leftover" embryos so it just isn't an option. Because I have one tube and it is on the opposite side as the useable part of my uterus (which is almost divided completely in half), the chances of me naturally getting preggo is...well, it ain't happening. Also, I think it is so much less of an issue now that we have "the three" and could have as many more as we wanted this way if we decided to (ummm, yeah, well....lol).

 

Anyway, so I have options, but if the testing comes back how we think? I'm *really* considering "the big one." Never to have another period with no hope of a baby "one day" and to get rid of all these issues? And my mom was able to shed the extra weight (size 16 down to an 8) after hers too just because she felt so much better (well, she used a diet too obviously!).

 

Okay, so experiences welcome!

 

I was thinking if I'm going to do this, I want to do it in late March, early April (not sure that is a possibility really, but)...I want it to be after the children's adoption, but ideally allowing me to recuperate while they are still in school.

[Amber in AUS]

I don't have any personal advice to offer. I know my Mum hasn't looked back since having hers. She has probably dropped a dress size and has certainly been less moody. She had the op about 5 years ago now.

[Down_the_Rabbit_Hole]

My mom said she didn't know how awful she felt health-wise until she had hers and felt terrific after. Swears it was the best thing she did for herself.

[southcarolinamom]

I had a hysterectomy at the age of 38 after suffering with painful endometriosis. It was the best thing I could have done - I felt soo much better after. Still do. But it was disappointing to know I could not have anymore children. I had so much scarring in my uterus/tubes area from the endometriosis, the GYN said I had a less than 10% chance of ever getting pregnant again.

 

God gave us 2 beautiful children when I turned 32 and 34. I'm happy!

[Pippen]

My mom said she didn't know how awful she felt health-wise until she had hers and felt terrific after. Swears it was the best thing she did for herself.

 

:iagree: I had it easy until perimenopause and then all hell broke loose. Two D&C's, one uterine ablation and BC pills did little or nothing to help. In hindsight I should have given it six months instead of five years. If I would have been working outside the home at the time I wouldn't have tolerated it that long. As it was because I was home I could deal with it so kept putting surgery off hoping a lesser treatment would take care of things.

 

Run and get your calendar and call your doctor!

[Spryte]

I had a hysterectomy at 27 (I might be the youngest person here, on that score). I have no regrets. None. It was the best decision that I could have made, and doing it gave me my life back, and made everything I have now possible - including 2 beautiful kids through adoption.

 

I could write volumes about the experience, about the feelings DH and I both experienced (we had been married one year when I had the hyst), and about the physical experience... but I'm not sure what you're looking to hear. You're welcome to ask or to pm me with specific questions.

 

Lifechanging... Yes.

[RoughCollie]

A friend of mine had a hysterectomy 10 years ago, when she was 42 years old. Her biggest problem was that the hospital kept giving her green jello on her lunch tray. She lived with us during her recuperation, which is how I know this.

 

She would not have been able to take care of kids or do housework for the first few weeks afterward. She had my kids and I to take care of her, which consisted mostly of bringing her meals, making sure she was well hydrated, doing her laundry, and keeping her entertained.

 

Her pain meds worked, and she slept a lot during the first 10 days. Her doctor would not let her go back to work for 6 weeks, but she felt able to do so after 4 weeks. She was a cashier in a grocery store back then, and did not go back to work until her 6 weeks were up because standing up for long hours could have been a problem.

 

It was the best thing she ever did, according to her. Mind you, her only child was grown, and she did not want to have more children.

[Miss Marple]

I had a hysterectomy a year ago (I'm 49). If I hadn't it would have just kept falling out. No problems with my cycle, though. I was surprised at how many symptoms I had that I blew off as age, etc. Those problems are gone! I love the absence of my uterus! I can't say it was life-changing, but it certainly has not been a problem :) to have it gone and, in fact, has been rather enjoyable. It was interesting to me, though, to find out that it was about 2.5 times normal size and full of fibroids!

[Pamela H in Texas]

Wow. I'm almost in tears. This is seriously what I have wanted for years. I was just so scared to give up that tiny chance we could have another baby. But now that I don't have that pull (well, as badly). The pain, the periods (of torture), etc.

 

I have extreme endometriosis (the original reason for the hyst plan when I was very young). It even got worse during pregnancy! I also had SEVEN other diagnoses of "those parts" and had had 5 surgeries by the time I was 22. A few years ago, I had a full fertility work up. That is how we found out that one half of my uterus (which is divided into two parts) wouldn't open at all anymore and that the tube on the other side was completely blocked.

 

Now add all the hormonal issues throughout my cycle, from day one til day 30. It's CRAZY. And painful. And worrisome. It has just gotten SO much worse over the last year. The doctor said that my symptoms would be early for a 40yr old and I've still got a few years til then! And I don't feel the need for holding out for a baby anymore.

 

I'm almost to the point of calling and moving my appointment with him up so I can get the ball rolling.

 

For those of you that have had one...with kids in the home....is THAT part hard? If I ran into summer or had to wait til fall and was homeschooling? When my mom had hers, my kids and I went and helped her for the second week (my dad stayed home with her the first week). It looked rough, like it really would be better if I could do it this spring before school lets out, especially since my teens went and got jobs! I do have plenty of people to help. Hubby gets home early (just before kids). I have a friend two streets over who'd do anything I needed and be a good help in an emergency. Next door neighbor is a stay at home mom if I needed anything. And then plenty in my congregation could help. If I did run into summer, my mom could come up.

Edited January 9, 2012 by 2J5M9K

[Rose in BC]

I had a hysterectomy 5 yrs ago at age 41. It changed my life for the better. I was so anemic severely affecting my quality of life. When I recovered i felt like I was ten years younger.

[Mom-ninja.]

My mom chose to have one at the age of 28. She had three dc by then. The Dr. told her she shouldn't have any more. So she had it done. She still says it was the best thing she did.

 

She has her ovaries though. She has not needed hormones.

[cougarmom4]

I had one a year ago (age 39)...I would say that it has changed my life for the better for sure. No more periods so heavy that I couldn't leave my house!

 

I will say that I have struggled with knowing I can't have any more babies. These feelings come and go for me--dh and I hadn't entirely felt 100% sure we were done...but my hysterectomy came after I almost bled to death one weekend and that trauma kind of changed my mind. But there has been a little bit of an emotional 'healing' that I'm still going through.

 

The recovery will depend on the kind of surgery you are having. I had laporascopic (sp?@?) and they didn't take out my ovaries--so I only had three small incisions and not so much of a hormonal change to deal with. My recovery was actually not so bad at all--I did stay in bed for a few days and then had to take things really easy for awhile--mostly my hardest part was overcoming the anemia due to so much blood loss.

 

I'd recommend this website: www.hystersisters.com

Fabulous site! It really helped to answer a lot of questions and help me know what to expect, before surgery and during recovery.

 

:grouphug: Best of luck to you as you make decisions!

[Carol in Cal.]

I was actually scheduled for a hysterectomy 16 years ago. Doctor and I both chickened out, mostly because of my age and mental state about it. Through the years, I hung on thinking that this stupid uterus DID give me 2 kids despite the odds, maybe it could do it again. I'm past that. The chances are slim to none (reproductive endocrinologist thinks I *may* be able to get pregnant with IVF but because of how my uterus is, we can implant only one at a time. I have a HUGE issue with the idea of "leftover" embryos so it just isn't an option. Because I have one tube and it is on the opposite side as the useable part of my uterus (which is almost divided completely in half), the chances of me naturally getting preggo is...well, it ain't happening. Also, I think it is so much less of an issue now that we have "the three" and could have as many more as we wanted this way if we decided to (ummm, yeah, well....lol).

 

 

Regarding IVF, pro-life Christians sometimes do IVF but make sure that they are fully committed to implanting all of the embryos over time, no matter how long it takes or how many they are ultimately blessed with. The freezing technology is quite advanced, so there is no reason to 'discard' any. And even if there were, as a pro-life Christian one would not do so. I would not rule out IVF if that is your desire.

[mchel210]

My sister is having one the first week of Feb with DaVinci (I believe that is what it is called) It is the computer that does the surgery with the dr. Said it had a little easier or shorter recovery period.

[Tammyla]

No personal experience, but my dear friend, sister and mil all had them.

 

My sister was young, mid-twenties and had her's for medical reasons. She's glad she did it, but experienced side effects from taking hormones. Loosing the possibility of carrying another baby weighed heavy on her heart or a long time.

 

Mil...had her's at 40, she was still a nightmare woman going through the change; her sister dragged her to the dr. for replacement hormones. (Her personality stuck at pre-hormone replacement, but he symptoms lessened.)

 

My df/43, had her's 1.5 years ago and has been very happy.

[Amy in NH]

:iagree: I had it easy until perimenopause and then all hell broke loose. Two D&C's, one uterine ablation and BC pills did little or nothing to help. In hindsight I should have given it six months instead of five years. If I would have been working outside the home at the time I wouldn't have tolerated it that long. As it was because I was home I could deal with it so kept putting surgery off hoping a lesser treatment would take care of things.

 

Run and get your calendar and call your doctor!

 

My mother had this same experience. I was a teen at the time, so I remember her misery. She finally had a laparoscopic hysterectomy as an outpatient. It was a brand new procedure when she had it done in the late 1980s. Her recovery time was 2-3 days of discomfort.

[Laurie]

My advice: Find out if you can have a da Vinci hysterectomy:

http://www.davincihysterectomy.com/index.aspx

 

The recovery is so much easier! I had this type of surgery several years ago. My surgery was at about 9am in the morning, I was back in my room around noon, and home the next day by lunchtime. I took one pill in the hospital to try to get some sleep...the sound of the air pressure wraps that they put on your lower legs after surgery was very annoying to me and was keeping me awake. Once I was off the iv and home I didn't need anything to help me sleep at night or for pain in the daytime(...I filled the pain med. prescription just in case though!) The most discomfort I had was from the gas they put into you during the surgery...I had pressure in my rib cage area on one side for a couple of days.

 

I took it easy for the first week, and my dh was able to take some time off. I wasn't supposed to drive for two weeks; my first day back behind the wheel was to drive to my 2 week post-op appointment.

[StaceyinLA]

I had experienced 4 ectopic pregnancies (3 within a 9 month span), and just couldn't let my body continue to go through that (physically OR emotionally). I still really wanted another baby, but was getting on the verge of being past it. I knew I didn't want to pursue anything like in vitro, so I just went ahead with the surgery.

 

I won't say it has been life-changing for me (I still have my ovaries, so I'm still gonna get to have all that fun with menopause), but life has been much more pleasant.

 

I did have the abdominal incision and recovery was rough, but I'd do it again given the same circumstances.

[Carol in Cal.]

I have a friend who had a hysterectomy in her late 40's or early 50's. She never has gotten the hormones right in the 10 years since then, I don't think. She changed from a nice, funny person into a really mean, sharp-spoken one. And she has no idea that this is so. When she had the surgery, I had known her very well for the prior 5 years, and had helped she and her husband make the case to adopt a second child. So I saw the change very clearly--night and day.

 

I have read that if you leave your ovaries, the after effects are far less drastic. If at all possible, I think that it is worth looking at whether you can do that.

[Pamela H in Texas]

Okay, I'm sure the doctor can explain this but since I was really not so sure, I didn't ask much...

 

But if you have JUST your uterus out, then how come it still makes such a difference when all the issues are because of hormonal changes which are because of instructions from the ovaries in the first place?

 

ETA: My mother had everything removed, I think. She hasn't had hormone replacement. She's better than ever emotionally. I would LOVE that aspect though it is only part of my worries.

[Miss Marple]

If your ovaries are left, you should not have any hormonal problems other than those you will normally have through menopause.

[garddwr]

Hi Pamela,

 

OK, I don't want to discourage or scare you. Just a caution that this is surgery and has all the risks of surgery. Sometimes surgery is necessary.

 

My SIL had a hysterectomy two years ago, everything seemed fine but a few days after she got home my MIL felt she should go check on her, got to the house and found her not looking well, checked and found a fever and convinced her to go to the hospital. She had contracted an MRSA infection, the Dr. in the emergency room told her her body was shutting down and she might have two hours left to live. We all feel it was a miracle and answer to prayer that she pulled through.

 

She's now very healthy, has lost weight, looks younger...

 

Any surgery can result in infection. I suppose the only real advice I can offer is be very alert for signs of problems after the surgery and get to the doctor if anything seems not right!

 

Blessings,

Sarah

[Colleen in SEVA]

I am faced with this decision right now myself. My situation is different than yours of course, but here is my current train of thought. Hopefully some part of it may help you or someone else decide what is best for your own situation.

 

Since I had breast cancer at a young age (symptoms started at 32), my surgeon strongly suggested removing my ovaries "at some point" because breast & ovarian cancer often show up together and there are no reliable ways to test or screen for ovarian cancer (basically, by the time they find it during an exam it is too late and has spread). I have done a lot of reading and research, and I agree that FOR ME and MY SITUATION I need to have my ovaries removed. I just have to decide when... and that is hard!

 

Chemotherapy put me into full menopause, and it was not fun. It was beyond hot flashes -- I was so irritable and snarky (had to ban myself from message boards and facebook as I became brutally honest and felt the need to share my strong opinions with those who maybe didn't need to hear them LOL!). There were also many other side effects that are too personal to discuss here (pertaining to marital relations). In the months following chemo, some of the menopause symptoms subsided, and I am much happier.

 

I know I need to do it eventually (I asked the doctor if I should wait until closer to natural menopause age, and she said no way -- especially since my mother is still pre-menopausal), and for me there are about the same number of reasons to do it sooner rather than later:

 

Reasons to do it sooner:

 

1. There are no screening tests for ovarian cancer (blood tests for the marker are unreliable). There is no way to see it coming.

 

2. There is no way to catch it early. By the time a doctor can feel it during an exam, it is very large and usually has spread to nearby organs. When the ovaries are removed AFTER they find cancer, they also take tissue samples from many organs and basically wait for it to show up.

 

3. I am done having children. This is not a factor for me to keep them.

 

4. I am young and healthy and would recover faster/stronger now than I would when older.

 

5. We have good insurance now. This may not be the case at some point in the theoretical future. It will probably cost many thousands of dollars if I have to pay for it, or free if I do it now.

 

6. I don't want to get cancer again. Cancer really stinks, chemo really stinks, the surgery would be much more involved if it is done after they find cancer, etc. This should be reason #1!

 

7. No more periods. OK, I really should NOT complain because mine have never been a big deal, I don't have any of those things they advertise drugs for on tv.

 

Reasons to do it later:

 

1. My life is finally returning to normal after 3 years of dealing with breast cancer stuff. I have just started running, am losing weight, and would have to take a break from all of that to recover from surgery.

 

2. It will put me back into menopause, which I got a taste of and am not looking forward to.

 

3. There are MANY medical concerns with early menopause -- increased heart disease and osteoporosis are the ones I am most worried about.

 

4. Hormone replacement therapy is SCARY. There are SOOOO MANY bad side effects from all hormone replacement therapies I am aware of.

 

5. It is SURGERY. With every surgery there are so many risks! Infection, reaction to meds they use, medical errors, DEATH. It was different with my mastectomy -- I had the surgery for a very obvious, necessary reason. This would really be classifed as elective surgery.

 

6. I will have longer to decide how much I want taken out. Ovaries obviously, but also the cervix, uterus, fallopian tubes, parametrium, upper vaginal wall... where does it end?!?! Each of these things has a cancer risk associated with it and is not necessary for survival... but there are considerations to factor in!

 

7. There are new discoveries all the time. Another option may become available in the next few years. I would hate to remove everything listed above, and then in 2 years find out it is no longer necessary. In fact, there is already an opinion that ovaries should NOT be removed as a preventive measure because statistically women who have them removed die earlier than women who do not (though it isn't that simple for me, since I had early onset breast cancer).

[Liz CA]

I have a friend who had a hysterectomy in her late 40's or early 50's. She never has gotten the hormones right in the 10 years since then, I don't think. She changed from a nice, funny person into a really mean, sharp-spoken one. And she has no idea that this is so. When she had the surgery, I had known her very well for the prior 5 years, and had helped she and her husband make the case to adopt a second child. So I saw the change very clearly--night and day.

 

I have read that if you leave your ovaries, the after effects are far less drastic. If at all possible, I think that it is worth looking at whether you can do that.

 

I've had a complete (tubes, ovaries, uterus) hyster in 2007. Has anyone here noticed a change in my posts??? :D Seriously, I had no choice but I refused to let it change my life. I did a lot of research on hormones and have found a naturopath who is very good with bio-identical hormone replacement. I feel fine. My estrogen levels are very low but due to a medical condition I am careful of not getting estrogen too high (endometriosis) but I take Maca (a herb) and it seems to balance me fairly well. I don't have hot flashes (either due to the Maca or I am lucky) and I do take bio-identical progesterone which helps me sleep better. It may take a little time to find what works but I would never give up until you feel good again. There are countless options out there - finding the right one for you is a path but it's not impossible.

[mum]

I almost cried hearing about your troubles and so wanting a release for you. I had a hysterectomy 5 years ago at age 33. It was also best thing I could have done for my overall health. It was a pretty standard recovery after the first few days of feeling pretty rough, and a week of feeling OK in general, but still a bit tender. My kids were 12, 10 and 7. I had it done the day after Christmas so that my husband who is PS teacher would be around to help as much as possible.

All the very best to you. I will be watching for updates!

[Liz CA]

I have a friend who had a hysterectomy in her late 40's or early 50's. She never has gotten the hormones right in the 10 years since then, I don't think. She changed from a nice, funny person into a really mean, sharp-spoken one. And she has no idea that this is so. When she had the surgery, I had known her very well for the prior 5 years, and had helped she and her husband make the case to adopt a second child. So I saw the change very clearly--night and day.

 

I have read that if you leave your ovaries, the after effects are far less drastic. If at all possible, I think that it is worth looking at whether you can do that.

 

Carol, I wanted to PM you but your box is overflowing. :D

[MrsJewelsRae]

This is giving me a lot to think about too. It is reassuring to hear so many positive stories. I also have endometriosis, as well as PCOS, I've hard 3 surgeries that were basically unhelpful. I was able to have our first 2 children after experiencing infertility, but by 26 my endo was so bad and I could not get pg again. My doctor started talking hysterectomy at 27 and I couldn't go through with it until I knew we had exhausted all viable options to get pg (short of ivf- too $$). We went to an RE and after a year of treatments we got pg on our third IUI attempt. Our baby is now 3 and I still want more! I just can't let it go. We've decided to go back to the RE and see if we can get lucky again. I'm not sure how long we'll try, I don't want our kids spaced too far apart, not that we had a choice. I also have they deep down "what if" feeling that holds me back. I'm still many years from menopause, at which point I will happily hand the uterus over without looking back, but in reality, I'm afraid it'll need to come out sooner.

 

I wish you luck and peace in the decision you have to make!

[Tammyla]

Okay, I'm sure the doctor can explain this but since I was really not so sure, I didn't ask much...

 

But if you have JUST your uterus out, then how come it still makes such a difference when all the issues are because of hormonal changes which are because of instructions from the ovaries in the first place? You still go through menopause, but don't have the pms / menstrual monthly visits.

 

ETA: My mother had everything removed, I think. She hasn't had hormone replacement. She's better than ever emotionally. I would LOVE that aspect though it is only part of my worries.

You should check with your mom and doctor.

 

I'm not sure of the changes/ advancements made since my sister had her full hysterectomy, (no ovaries left) but she had to go on the hormone therapy. Mil and df, kept the ovaries and didn't have take them, although mil desperately needed them.

[Carol in Cal.]

Carol, I wanted to PM you but your box is overflowing. :D

 

Cleared it!

[eloquacious]

The wife of my husband's friend had a partial hysterectomy a few years ago, and when he realized what that would mean for their ... ahem ... marital life ... I'm pretty sure he secretly started wishing I'd need one after we were done having children, too. No more preventative measures, no more Flo. As long as you can keep your ovaries and hormones, and the surgery will help alleviate your suffering... :)

[hsbeth]

I had a hysterectomy last year. For me, it was life changing in a very positive way. Since the birth of my 4th child in 2006 I began suffering from terrible cycles and was diagnosed with several large fibroids. They mentioned ablation as a temporary measure, but I opted against it as I have an abnormally shaped uterus. B/c my fibroids grew so quickly (I was waiting for the "perfect" time to schedule and eventually figured out there wasn't going to be one) I ended up having to have old-fashioned open abdominal surgery. It was supposed to be the most grueling and have the longest recovery time compared with all of new vag. and laproscopic methods. I found it to be an easier recovery than my c-secs. I spent 2 nights in the hospital and went home on the third day. I did take it easy for 2 weeks or so, but gradually got back into my full routine by 4 weeks.

 

Before having surgery, I was sluggish and tired all of the time (low iron), was planning my life around my cycles, and had gotten sedentary. Today, I feel like a whole new woman... seriously. Once I recovered from surgery I had the energy to excercise again (now run 10K's) and have lost weight as a result. I feel more emotionally balanced as well. I had uterus, cervix, and one ovary removed. Once inside they also found certain parts that were a bit "saggy" and lifted them. I seriously feel 15-20 years younger.

 

I was concerned about whether our marital relations would be different, they have- but in a good way.

 

The website hystersisters.org has good info., but beware of some horror stories that I don't think are typical.

[Live2Ride]

I was a bear before mine. I was also young. I was having trouble conceiving and carrying to term. I had a few miscarriages, a D&C and multiple other issues. The hormones were making me nutty. I had endometriosis, cysts, a prolapse that was twisting to the left, an inverted cervic, of course this was affecting my bladder, and during surgery, found that my poor right ovary had been flipped and was being pulled down a bit because of everything shifting left...fun fun.

 

My doc finally felt bad enough for me that he went ahead and did it. I have felt 150% better!

[Just Beachy]

Please check out www.hystersisters.com. It is a very encouraging site with great information. You will read about women who have had various types of hysterectomies and can follow along with them in their recovery so you know what to expect.

 

For me, I went into my dr begging for one. He talked me down and felt that an ablation would help me. It has been almost 2 years, and so far so good. I waited far too long to have it though and am saddened at the things I missed out on because I was never feeling well. I have promised myself that if I start to have problems again. I will not hesitate to have the operation. In most cases, it is much easier and quicker recovery than in years past.

 

:) Beachy

[JessReplanted]

My mother went crazy after her hysterectomy.

 

So, it was 'life changing' in that we had to live with a crazy person

for several years, and my parents divorced.

 

Just make sure you take the hormone supplements!!

[RoughCollie]

I think whether someone needs to take hormones depends on the person.

 

My friend had a complete hysterectomy. She is not taking hormones. Her personality has not changed. She has since made many changes in her life for the better.

 

Maybe that is unusual.

[leeannpal]

I will be having one later this year. I have PCOS and endometriosis. I've also entered perimenopause and have dizzy spells, nausea and lots of pain during the second half of my cycle. I am truly hoping that it will be a life-changing event for me!

[luvnlattes]

I can't speak from personal experience but I have a close friend who had one a few years back. She was so happy with how everything turned out she said she'd do commercials for them! I didn't realize she had been that miserable. They removed everything, yet she doesn't take any hormones which surprised me. I hope the procedure brings you the relief you need.

[KungFuPanda]

Nobody has addressed this, so I'm going to ask with all the bravery my secret identity allows . . . how does a hysterectomy effect your response to TeA? Can you still have your . . . um . . . Oolong? Or is it just that any sort of TeA is better than the pain and suffering that lead you to the procedure in the first place?

 

FTR, MIL loved her hysterectomy and was delighted to leave the hospital 8 pounds lighter.

[Miss Marple]

Nobody has addressed this, so I'm going to ask with all the bravery my secret identity allows . . . how does a hysterectomy effect your response to TeA? Can you still have your . . . um . . . Oolong? Or is it just that any sort of TeA is better than the pain and suffering that lead you to the procedure in the first place?

 

FTR, MIL loved her hysterectomy and was delighted to leave the hospital 8 pounds lighter.

 

No problems with TeA. In fact, I would say it's better than before (possibly all psychological, but who cares?). :D