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Terabith

Talk to me about open hysterectomies

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So...I’ve got this growth on one of my ovaries.  GP thought it was a fibroid but ultrasound indicates probably ovarian.  It’s huge.  Like 27 cm x 25 cm x 7 cm.  So it has to come out, even though I’m not having any symptoms besides feeling of pressure from this heavy mass. Apparently that’s a good thing. It mostly just feels like I’m pregnant.   And surgeon wants to take out affected ovary and uterus.  Whether she takes the other ovary depends on what it looks like and what genetic testing says.  If she does, she will put me on hormone replacement therapy.  I’m 43 and haven’t had any peri menopause symptoms.  She thinks it’s probably benign, both because of how big it is and how it moves, but she really won’t know until she gets in there.  She has to cut from my pubic bone to over my belly button.  

I’m sad and scared, both about the surgery and about the (relatively unlikely) chance it’s cancer.  I’m kind of attached to my internal organs.  I feel betrayed by my body.  

Surgery is June 10.  She said 2-3 days in the hospital.  Afterwards I will go to my MIL’s house for a few days to a week or so  so I don’t have cats jumping on my incision.  Also her house has a walk in shower and people at home all day.  

Surgery is June 10.  Has anyone had an open hysterectomy?  What was recovery like?  What was life like afterwards?  

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I haven't, but one of my best friends had one several years ago. She was put on a hormone patch right away, and she's done fine. She came home directly from the hospital and her recovery was relatively smooth, but her husband was very supportive and her DD, who was pretty well an adult then, was also there to help much of the time. 

I hope it goes well. Will be thinking of you.

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So sorry you're having to deal with this. Sounds positive about the nature of the growth, though. I've not had a hysterectomy, but have had 4 c-sections with the last one at age 40. The recovery from the first c-section was the toughest physically and mentally, as that was the initial cut through all the nerves and the pain seemed the worst and mentally I didn't know how strong I really was and could be after surgery. The nurses and physio-therapist wanted me to get up and start doing specific things to help the recovery. I felt like a mess and was just trying to process having had my first major surgery (and a first baby). By the 4th surgery I was way more confident in myself - I wasn't going to break and never bounce back.

All the best and hope everything goes really well!

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Nm

Edited by ```
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46 minutes ago, ``` said:

I'm not sure what an open hysterectomy is, but I just had a radical hysterectomy this past December.  My surgeon also cut from the pubic bone to the belly button.  She removed everything - cervix (cancer), uterus (a 2nd cancer), Fallopian tubes, and ovaries, plus 47 lymph nodes.  Or, as one of my kids put it, 'all my guts'.  lol

Anyway, I was in the hospital for a couple of days and then home.  I walked up a flight of 13 steps when I got home, so no problem with steps.  The worst part was the stupid catheter.  There was pain from the cut, sure, but having to deal with that catheter for a couple of weeks was miserable.  I got it out at the 2-week checkup and things went much better after that.  By 6 weeks, I was feeling fairly normal.  Still not lifting heavy things or going to the gym or anything like that, of course.  But doing light housework, going up and down stairs regularly, etc.

I stayed in my kids' apartment and there was usually someone around if I needed help with anything.  They cooked, etc.  

The staples they used were huge and very annoying, too.  It was a relief when she removed those.  

The stitching stuff they used was also annoying and got kind of dry.  I smeared some Bacitracin zinc ointment the entire length of the cut and that helped with that. 

I wasn't attached to my organs much, what with the cancer and all.  It was a huge relief to be rid of them, in my case, and I feel much better without them.  But I was also almost 20 years older than you are, so there's that.  And I refused the HRT.  I just wanted to go home and get all the drugs they had pumped into me OUT of my system.  Which I did.  That also helped me feel better.

Good luck with your surgery.  As my surgeon said, "You WILL feel normal again."  Only your new 'normal' may just be way better than your old 'normal'.  Mine was. 

ETA:  Oh, and I do think that having been in fairly good shape helped speed up my recovery.  I had been going to the gym for a couple of years.  That, and eating healthy.  I still needed to lose some weight, but my muscles and gut were in good shape before the surgery and it definitely helped me recover faster. 

Thanks!  That’s helpful.  She said open just meant in contrast to laparoscopically.  I hadn’t even thought about a catheter.  I will have to ask about that.  That would really suck.  

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56 minutes ago, ``` said:

I'm not sure what an open hysterectomy is, but I just had a radical hysterectomy this past December.  My surgeon also cut from the pubic bone to the belly button.  She removed everything - cervix (cancer), uterus (a 2nd cancer), Fallopian tubes, and ovaries, plus 47 lymph nodes.  Or, as one of my kids put it, 'all my guts'.  lol

 

Wow, I'm so glad you're okay!!!

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Hugs, Terabith. I haven't had a hysterectomy, but my grandma did in her 40's and she said it was one of the best things that ever happened to her. My mom, on the other hand, chose not to have a hysterectomy for *huge* fibroids and suffered with pressure and discomfort and very heavy bleeding for probably at least a decade until she went through menopause. After seeing what she went through, I personally would have everything out and be done with it!

Hope all goes well! 

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About recovery time, mine was twice as long as expected and I was in excellent health. She said 3 weeks, it was 6.  When I asked about it she said it was likely my age.  After your late 30s you don't always bounce back. I had laparoscopic at 41 for 4 fibroids-the largest weighed just over a pound (I had the surgeon convert it to a measurement I could relate to.) I had my uterus and cervix removed, so it's different than your situation.

After the recovery I wanted to cry for my pre-surgery self. I had incrementally gotten worse for so long I had forgotten what feeling normal was like. Surgery was the best thing I'd ever done for myself physically.
 

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3 hours ago, Terabith said:

So...I’ve got this growth on one of my ovaries.  GP thought it was a fibroid but ultrasound indicates probably ovarian.  It’s huge.  Like 27 cm x 25 cm x 7 cm.  So it has to come out, even though I’m not having any symptoms besides feeling of pressure from this heavy mass. Apparently that’s a good thing. It mostly just feels like I’m pregnant.   And surgeon wants to take out affected ovary and uterus.  Whether she takes the other ovary depends on what it looks like and what genetic testing says.  If she does, she will put me on hormone replacement therapy.  I’m 43 and haven’t had any peri menopause symptoms.  She thinks it’s probably benign, both because of how big it is and how it moves, but she really won’t know until she gets in there.  She has to cut from my pubic bone to over my belly button.  

I’m sad and scared, both about the surgery and about the (relatively unlikely) chance it’s cancer.  I’m kind of attached to my internal organs.  I feel betrayed by my body.  

Surgery is June 10.  She said 2-3 days in the hospital.  Afterwards I will go to my MIL’s house for a few days to a week or so  so I don’t have cats jumping on my incision.  Also her house has a walk in shower and people at home all day.  

Surgery is June 10.  Has anyone had an open hysterectomy?  What was recovery like?  What was life like afterwards?  

Oh man I am so sorry.  I know it is scary but it will be ok.  (((hugs)))  

I went through menopause earlyish and I was completely done by age 45.  There are some good things about it.  No periods!  🙂

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46 minutes ago, MercyA said:

Hugs, Terabith. I haven't had a hysterectomy, but my grandma did in her 40's and she said it was one of the best things that ever happened to her. My mom, on the other hand, chose not to have a hysterectomy for *huge* fibroids and suffered with pressure and discomfort and very heavy bleeding for probably at least a decade until she went through menopause. After seeing what she went through, I personally would have everything out and be done with it!

Hope all goes well! 

Yes, this is true.  My MIL needed a hysterectomy at about 60 at least but she never would do it.  She dealt with a collapsing uterus and trouble controlling her urine for all these years.  Her quality of life would have been better if she had just listened to the doctor.  She is still alive at age 89 but still.  She also needed new knees and never would do it. She barely can walk with a walker now.  

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I found the pain minimal, much less than when I had my wisdom teeth out. I felt healthier than before within a couple of weeks, but the total recovery time was about six weeks. I did feel fragile and abused for a while. It was hard emotionally, and I even dreamed of buying a pink car. (Pink is normally my least favorite color ever!) My suggestion is to get counseling early on if you need it. I waited too long. ( I had the additional problem of wanting a child, so this was a big big deal for me.)

I did have weird insomnia after the hysterectomy. I would wake up with adrenaline rushing through me, feeling like I was tapping into all the mysteries of the universe. Then I would feel terrible the next morning. I don't know why that happened.

Edited by Pronghorn
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1 hour ago, Homeschool Mom in AZ said:

About recovery time, mine was twice as long as expected and I was in excellent health. She said 3 weeks, it was 6.  When I asked about it she said it was likely my age.  After your late 30s you don't always bounce back. I had laparoscopic at 41 for 4 fibroids-the largest weighed just over a pound (I had the surgeon convert it to a measurement I could relate to.) I had my uterus and cervix removed, so it's different than your situation.

After the recovery I wanted to cry for my pre-surgery self. I had incrementally gotten worse for so long I had forgotten what feeling normal was like. Surgery was the best thing I'd ever done for myself physically.
 

I think it's really an individual thing. I had a vaginal hysterectomy (also for very large fibroids) in my early 40's, and I felt incredibly better/stronger/healthier three days afterwards than I had for many years prior. My biggest issue by far was reminding myself not to overdo it for a few weeks because I felt SO much better so very quickly. I totally agree about it being the best thing I'd ever done for myself.

I also agree with what @wintermom said regarding experience with surgery. I think that makes a huge difference. My first c-section threw me for a minor loop. The second was pretty much a breeze. I think those prior experiences made the hysterectomy seem really, really easy. If this is your first major surgery, definitely be prepared to take it easy and be kind to yourself.

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I had a breast reduction about seven years ago.  She said this would be a significantly harder surgery than that.  It took about a month for me to feel completely better from the breast reduction.  I didn't have a lot of pain, although there was a fair amount of discomfort.  But I was exhausted for far longer than I expected.  I'm a bit concerned about the size of the incision.  It sounds like it will be a lot bigger than a c-section.  I've known people who have had pretty variable experiences with c sections, but a fair number of them had difficulty walking the first couple of days.  

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I had one in my very late 30’s after 3 ectopic pregnancies in a 10 month period. It was time - that emotional roller coaster just about did me in (I really wanted another baby).

They took everything except my ovaries, though I did wind up completely through menopause (as in ZERO hormones left) within 4-5 years of that. I basically had no symptoms.

Recovery was like other major abdominal surgery. I had a c-section with my first child, and had also had a tubal reversal through the same incision; this was a similar recovery to the reversal - not quite as bad as the c-section because I wasn’t also recovering from the postpartum “extras.”

Honestly, I’ve never had much of an issue. Since menopause I’ve had sex drive issues and some sexual function issues (just some discomfort due to changes in that area from lack of estrogen - sorry if that’s TMI). I did an estrogen cream on and off to help with those symptoms and have done some low-dose testosterone a few times to help with the sex drive, but other than that, no hormone replacement. I likely won’t do the testosterone again, and I certainly wouldn’t do it regularly, mainly for vanity reasons - it DOES make you grow hair in unwanted places (think moustache), and when I tried estrogen pills, I started get zits again like when I was a dang teenager. No thanks!

All in all, I’ve not had many issues and I’m about 12 years out. I did have to come to grips with the never having another baby thing, but I do NOT miss having monthly cycles a bit.

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Nm     

Edited by ```
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I haven't had it, but I did used to be a nurse on an OBGYN floor. How you feel immediately afterwards seems to be highly individual.  Some women spring out of bed almost immediately and walk circles around the hospital floor.  Others struggle.

You will come out of the surgery with a catheter.  You might not feel it until it's removed. A certain number of hours later a nurse will remove it. It won't hurt, but it can restrict movement. Then you'll probably have a nurse or a tech bring in a tiny ultrasound machine that measures the capacity of your bladder once an hour or so later.  Sometimes women can get up and pee immediately.  Others have so much swelling they need a catheter for a while.

I will say if you can force yourself to try and get up and walk a bit (even if you need a nurse to hold on to you for balance), it seems like people do better the more they walk. Improving circulation with walking seems to speed up healing.

Even if you hate drugs, try to have a loved one have an alarm on their phone to keep ahead of the pain for at least 5 days.  It's difficult to catch up to any pain when you've missed a dose.

Ask the anesthesiologist for anti-nausea meds.  Nothing is worse than vomiting for days as a side effect. 

Do call for help before you really need it.  On a general med-surg hospital floor like you'll be on your nurse will likely have 3+ patients, and the techs on the floor might have 12-15.  So if you need help to get up and pee or you're uncomfortable because you can't pee it might take them ten or twenty minutes to get to you, especially if there's less than optimal staffing.

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PSA on the catheter—I loved mine because I did not have to hurry to the bathroom.  Did not feel it at all.

I had tumors removed from both ovaries.  Cut was from side to side, so I still had some stomach muscles, but they were very tender for a couple of weeks.  Sneezing was intolerably painful—but there is a trick to prevent it which is that you put your finger under your nose and press very hard toward your upper gums, straight back, when you think you are going to sneeze and that usually prevents it.

Demerol is a great high but it makes me pretty nauseous, not worth it IMO.

They will want you to walk right away and to practice huffing deeply to get your circulation and breathing back to normal.  I found that holding a soft pillow over my stomach was helpful when walking around.  Also, standing up straight is counterintuitive but very helpful in avoiding clenching your stomach muscles.  I was in the hospital for about 5 days, and then needed help getting around at home for about 2 weeks.  Missed 6 weeks of work then had 1 week of working halftime before getting back to normal.  I had partial numbness down the front of my thighs for a couple of years afterwards, which I had not been expecting, but the nerves must have grown back because it finally went away.  

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This same scenario happened to me when I was about your age - around 43. I do have a "zipper" up my abdomen as well.

I had everything removed cervix, uterus, tubes and both ovaries. Bio-identical HRT has worked fine for me. I also started to consult a naturopath immediately after the surgery to sort of reboot and change some things, get educated, etc.

First: Hospital Stay:

Pack comfortable clothing without any buttons or zippers since it's likely that will be felt on the fresh scar.
So I took several comfy light sweater tops and loose fitting sweatpants. Plan to live in those for a few weeks. I healed fast but followed instructions religiously because I hold to the principle that I had one chance to heal right.

Just read Carol's reply and wanted to add "YES!" to the pillow. A friend of mine sewed a large pillow for me and I held it over my stomach above the seat belt on the drive home (we were a few hours away from the hospital) and this helps tremendously to hold the incision in place and nothing is moving. Sneezing or coughing is best avoided for the first couple of days.  🙂

The website hystersisters was helpful in getting pre-op advice as well as post-op.

I have felt better in the last 10 years than I had since my twenties. My problem turned out to be also an overgrowth of endometriosis, however, without the typical symptoms.

About 4 weeks after surgery it was as if it had not happened, everything healed fine. I massaged around the incision to minimize scar tissue forming - don't know if it made a difference but again I am of the opinion "If it can't hurt, it may help." 

It's a scary prospect. Ask a lot of questions. Choose a surgeon in whom you are confident and with whom you are comfortable. But I am glad I did it and probably should have done it a lot sooner.

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Nm

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1 hour ago, Terabith said:

I had a breast reduction about seven years ago.  She said this would be a significantly harder surgery than that.  It took about a month for me to feel completely better from the breast reduction.  I didn't have a lot of pain, although there was a fair amount of discomfort.  But I was exhausted for far longer than I expected.  I'm a bit concerned about the size of the incision.  It sounds like it will be a lot bigger than a c-section.  I've known people who have had pretty variable experiences with c sections, but a fair number of them had difficulty walking the first couple of days.  

 

I did nap during the day for maybe 2 weeks and evidently slept rather deeply as my ds tried to wake me once and couldn't. I woke to him inches from my face, saying loudly "Mom?" 🙂

I believe one of the most important things is to take it easy afterwards and go with your body's healing time. I walked immediately in the hospital but due to low BP, had two strong people on either side. After that I walked the hallway. I was told it speeds up healing. By the time I came home from the hospital - 3 days later - I walked carefully but there was no pain.

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Yes, this is a MAJOR shock to your system, and anesthesia is basically mild poison, and you need to rest a lot to recover.

Also, get granny panties.  Just do this.  You don’t want the elastic anywhere near the incision.  

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Nm

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I had the exact same thing at 29yo complete with large cyst (that popped on its own right before surgery).  I also had endometriosis so he had to open me up to make sure he got everything.  Recovery was simple but that was probably because of my age.  I had the “zipper” that was removed a week or two after.   I had a morphine drip but I’d advise you to try not to use it.  They removed it the next day because it turned out I’m allergic to morphine.  The nurse said recovery is quicker without it anyway.   I was sore for a couple weeks but nothing major.   I hope recovery is smooth for you!   Will be thinking of you, terabith! 

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