Downside to a hysterectomy?
June 13, 2016 1:53 PM   Subscribe

I’m considering a hysterectomy. I had an endometrial ablation a few months ago, but did not see any improvement in my symptoms. I have an upcoming appointment with my doctor to discuss the specifics of a hysterectomy as the next option, and want to gather info so I can go into that conversation as prepared as possible.

I’m considering a hysterectomy to deal with my debilitating periods (issues with both pain and bleeding). I have fibroids, and the doctor says adenomyosis may also be a possibility. I've had a hysteroscopy and transvaginal ultrasound to try and "see" what the issue is, but there's nothing definitive beyond noting the (not giant) fibroids. The ablation seems to have had no effect on the quantity or rate of flow during the period (including occasional clots the size of the center of my palm). The accompanying pain (intense enough to wake me at night/keep me from getting sleep; sometimes accompanied by nausea, or overall weakness) is the same, or even worse—starts a few days before the period, and can last up to 5 days after. So I’m in pain and dealing with crazy bleeding up to half of each month.

This situation has gotten steadily worse over the past 5 years, bringing me to where I am now. I am so over it. I realize hysterectomy is a big deal, but it feels warranted at this point. The doctor is supportive, and has said given the results of what we have tried so far, it is a reasonable next step, and that insurance should cover it.

What I really want to know, though, is what are the downsides of the procedure? It is easy for me to focus on the hoped-for upside (no more bleeding! no more pain!), but I want to make sure I know what I’m getting into. I’m done having children, so that isn’t a concern. I believe I’d keep my ovaries (that’s on the list for discussion with the doctor). What else do I need to be sure to ask/understand?

If you had a hysterectomy, what would you advise? How did the surgery itself go, and is there anything you’d do differently in terms of choosing it, or scheduling it, etc.? How long was your recovery, and was there anything unexpected about it? Now that time has passed, would you still make the same decision?

Thanks in advance for any advice you have.
posted by msbubbaclees to Health & Fitness (21 answers total) 7 users marked this as a favorite
I had a total hysto due to a diagnosis of endometrial cancer, stage 1-A. This was last August.
I had hoped for the "robot" but it wasn't available on my day. I then hoped to have a horizontal incision (think the Amazon "arrow") but no go to that plan. So I got the good ol' zipper cut, stitch-free (closed with tape.)
Surgery was, for me, utterly uneventful. Suggested time off from work: four to six weeks. I went back to work as dog walker after four weeks, albeit very mellowly. We moseyed rather than walked, really.

I can't think of any downside. When my mom had her hysto, she said, "I'm so glad to be rid of the damn thing," and I feel the same!

No problems from the incision and resulting scar, no depression, no impairment of movement, no hindrance to going up and down stairs. My general stamina had returned after about six or eight weeks.

Since ablation hasn't worked well for you, good heavens, a hysterectomy is your jam! Don't be looking for downsides.
posted by BostonTerrier at 2:11 PM on June 13, 2016 [2 favorites]

I had my hysterectomy almost 9 years ago and honestly it was one of the best decisions ever made for me. I was supposed to have it outpatient laparoscopically but due to a weird thing that will probably only ever happen to me, I ended up with an abdominal incision. If it had been able to be done with the lap, I was supposed to be home the same day.

Recovery wasn't bad, no lifting for several weeks but able to return to a desk job in 8 weeks (would have been 4 if I'd had the lap). I agree with BostonTerrier, I can't think of any downside if you're done having children.
posted by hollygoheavy at 2:20 PM on June 13, 2016 [1 favorite]

I would make the same decision. I had episodes of very heavy bleeding from fibroids, and after having several procedures and medical interventions over several years for intermittent bleeding I finally had a bleeding episode on a week-long vacation that had me weak and short of breath. I'd been putting off actually doing something definitive about the situation, but facing a trip to a strange hospital in a distant location was also scary. I recognized that I had to do something about it.

Hysterectomy was not on my radar, having heard for years about women who had "unnecessary" hysterectomies, but during one of my GYN appointments to have a uterine biopsy my Nurse Practitioner suggested I consider it. My hemoglobin was down to 8 gm/dl (from my normal 12 gm/dl) and I couldn't climb a flight of steps without stopping to pant for air. She suggested I meet with a GYN surgeon, someone who typically treats women with ovarian cancer, but also performs other GYN surgery. This was a wonderful suggestion I would recommend. He was great, and used a partial laparoscopic and partial manual approach ( via the vagina) , so that I didn't have an abdominal incision except for a couple of small incisions for the laparoscopic instruments. I chose to have my ovaries removed because my mother had ovarian cancer and it seemed prudent.

I am a total pain wimp, and I did hurt post-op. I had one overnight in the hospital with a PCA pump, patient-administered pain medication, and went home the next morning. I spent a couple of days recovering on the couch and was up and around a week or so later. I had taken several weeks off from work, but I could have returned earlier than I did. Once I recovered from the surgery I never looked back.
posted by citygirl at 2:22 PM on June 13, 2016 [1 favorite]

I had a hysto this past December (completely laparoscopic, took out the ovaries as well but I'm on T so I can't speak to the hormonal specifics). Surgery was completely uneventful. I had someone stay with me for the first 24h but didn't really require any assistance, I just slept. I had a friend walk my dog once a day for the first 3 days but after that I was fine to shuffle to the park roughly 300m down the street a few times a day (we had no back yard); it was a bit taxing but I had nothing else to do, I just napped and watched documentaries. I took the pain meds when I needed them and had a very comfortable recovery despite being largely on my own the entire time. I was back to normal within 4 weeks.

I would make the same decision in a heartbeat. I thought I would be a little more emotionally impacted by it (because I do want kids and this was my one biological ticket to them) but really I'm just glad the darn thing is gone. They aren't kidding about no lifting though, I tried to move a sizeable dog bed while in an awkward position the second night and oh boy that was not fun (a lot of shaking and weakness for a few hours but I was fine, no lasting effects).

I don't understand why you're looking for downsides for what is now almost a routine procedure. My surgeon was incredibly confident in the procedure because she does so many. If your uterus is giving you this much trouble and you're willing to have a hysto just do it.
posted by buteo at 2:27 PM on June 13, 2016 [1 favorite]

I had one too, abdominal incision because of too-big fibroids, and I've had no regrets.

It did hurt for a while post-op, but the pain from the surgery wasn't as bad as the pain it was treating, so even that wasn't a big deal. And I really don't miss that uterus at all. I was done with it.
posted by ernielundquist at 2:33 PM on June 13, 2016

My hysterectomy was done almost thirty years ago and, even if the laparoscopic and vaginal options had been available at the time, my very large fibroid tumor precluded any method other than cutting through the muscles. That meant a longer recovery period and some odd gyrations when I needed to cough or sneeze, but I managed. Oh, and I recall emptying the dishwasher one plate at a time because I couldn't lift a whole stack.

I was told it would take four to six weeks before I could go back to work even part-time. But because I worked hard at maximizing my health and faithfully performed the "flatten your stomach" exercises in the month-long run-up to the surgery, I was back schlepping luggage and traveling to my clients in about three weeks. Mind you, I collapsed into the hotel bed by six o'clock each night, but I was able to work.

If you decide to have a hysterectomy, make sure they take the cervix as well. My philosophy is that you really don't need a doorway to a room that no longer exists. But having no cervix makes sex so much better.

One upside is that, for years afterward, when the doctor asks you for "the date of your last period", you will always know the answer without thinking about it or looking at a calendar. And it was fun to pass along all the tampons and other paraphernalia to my sister (who thought I'd gone a bit over the top by gift-wrapping every box) and reclaiming a whole drawer in my bathroom.
posted by DrGail at 2:34 PM on June 13, 2016 [3 favorites]

A really great place to get more info and perspectives is Hyster Sisters.
Possible downsides:
- If you decide to have your ovaries removed, you may need to take hormones. Even if you retain your ovaries, you may have some menopausal symptoms after the surgery, like hot flashes, while your body adjusts.
- Some patients have had complications from the surgery, like incontinence or other pelvic floor issues.
- You'll need to have the insurance or funds to cover being out of work for 4 - 8 weeks. I had a laproscopic-assisted vaginal hysterectomy, and I was out for 4 weeks. I needed them. Even when I went back to work, I did a lot of work from home, where I could lie down for a stint if I got tired. Even sitting for an hour or two was tiring at one point, because of using my abdominal muscles.
- You will need help at home with cooking, laundry, cleaning, and other chores. Your ability to do all of the usual household work will be affected during your recovery period.

I'd do it again, because ultimately my life is so much better without constant bleeding, pain, and bloating. Planning for being unable to work (both at work and at home) will alleviate a lot of the bother. Also, ignore anyone who tells you they had a hysterectomy and two weeks later than ran a marathon or what have you. Results not typical! Let yourself rest and heal.
posted by tuesdayschild at 2:48 PM on June 13, 2016 [3 favorites]

It's almost a year to the day since my TAH with retention of ovaries.
- I had a second surgery due to bleeding afterwards, which was scary
- Recovery was slow - you do need to take it seriously. I had some periods of mild depression and anxiety during this time, mostly due to spending too much time googling negative outcomes. And the effects on your digestive system take a while to resolve which is unpleasant!
- I still have a band of numb skin across my stomach but I hardly notice it any more
- I have a weird 'cut up' feeling in my abdomen which comes and goes, and seems to get worse with stress. It's not painful, just odd and disconcerting.
- And I have a 24 cm scar which is slowly fading

But my life is infinitely better without the bleeding. Sometimes I have to stop and force myself to remember how profoundly rubbish living with fibroids was.

Pleas mail me if you like
posted by Heloise9 at 3:10 PM on June 13, 2016

Given your symptoms, get two additional opinions from other doctors. At the very least, get an additional opinion from a pelvic pain specialist, if there is one in the area.

My suggestion is that you need a doctor to consider endometriosis and/or fibroid removal surgery, both of which are doable laparoscopically and which might help identify other issues.

Furthermore, you want to find the absolute best surgeon that you can find for any kind of surgery, but it is especially necessary for pelvic/abdominal surgery -- adhesions (scar tissue) from surgery is a major contributor to post-surgical pain, and a skilled surgeon with the best tools can minimize adhesions.

Good luck!
posted by internet fraud detective squad, station number 9 at 3:10 PM on June 13, 2016

For me, the most painful thing in the first week was getting up from a reclining position. A foam wedge pillow helped a bit -- I slept and rested with it under my back and head, and it was easier to get up from the raised position.

After the surgery, I was told not to drive until I could step on the breaks hard. It took more than four weeks. Even after that, just pushing a shopping cart around a supermarket was difficult and tiring. After 7 weeks I felt a lot better.

I had the old-fashioned surgery, no laparoscopy, with a horizontal incision. For many weeks my lower abdomen would swell and get kind of jiggly late in the day. Wearing a support panty (used to be called a panty girdle) helped because it prevented the jiggle, which I guess was caused by fluid under the skin. Get a cotton support panty if you can find one.
posted by wryly at 4:38 PM on June 13, 2016

Hysterectomy for fibroids 15 years ago, vertical abdominal incision. Was off work for about 5 weeks. Was careful the first 2 weeks- slept in a Rent-A-Center recliner instead of trying up the stairs during that time. Had a bit of an issue with a staph infection at the incision, but proper care took care of it. Seconding Hyster Sisters as a resource. Their recommendation was to get up and and walk ASAP, post-op, which I did, and I think spurred my recovery. Period-free is the BEST!
posted by sarajane at 7:04 PM on June 13, 2016

I had a laparoscopy-assisted vaginal hysterectomy three years ago, and kept my ovaries. I was 41, but never had kids. Mine was for uterine prolapse, after years of heavy bleeding, fibroids, PCOS, etc.

The surgery itself was a piece of cake. I had very little pain, just bloating from the procedure itself. I took four weeks off to recover at the advice of my doctor. I tried to work some from home, but my brain was MUSH from the anesthesia, and I was hormonal, even though I still had my ovaries.

The weirdest thing I've noticed since then is that I still get PMS symptoms from time to time, so my ovaries are still doing their thing (I'm 44 now). Not often enough to track on a calendar, just occasionally. No other symptoms of note, but it is WONDERFUL not having periods anymore!
posted by jhope71 at 7:41 PM on June 13, 2016

OH MY GOD it's been 2 years since i threw my godawful fucking uterus (multiple large fibroids, pedunculated polyps protruding from my cervix, severe adenomyosis) in the trash where it belongs and it has been glorious, wondrous, my god. it's not just ending the monstrous agonizing periods, it's also that the vast VAST majority of my horrific pms symptoms are gone JUST GONE GONE FOREVER FREE AT LAST. no gastro upset, no severe mood swings, no randomly exploding butt troubles, i think i've had maybe 3 hormone related migraines in 2 years, no fainting on the L train, etc.

i had everything out but the ovaries in a transvaginal removal, which means my cervix is also gone so yay no more horrible pap smears. it was an outpatient procedure and i spent the next week wrecked on oxycontin sitting on the couch playing video games. honestly the worst part was not being able to poop for almost 10 days. in my efforts to do so i busted open a couple of stitches, which had to be corrected a month or so later at my followup, but otherwise there were zero complications. I think i ended up taking 3 weeks total off of work but in all honesty i could have gone back after 2.

my main super serious advice is to take as many laxatives as you can during that first week, just huge fistfuls. people were like "oh, just take stool softeners, just eat a lot of fiber, just have some prunes!" NO. THIS WAS NOT ENOUGH and it was fucking agony. even a triple dose of my usual adderall could not get things moving.
posted by poffin boffin at 7:47 PM on June 13, 2016 [4 favorites]

my only regret is that because of medical waste laws i was not allowed to take my uterus to the chelsea rifle range to nail it to a wall and shoot at it with guns
posted by poffin boffin at 7:49 PM on June 13, 2016 [25 favorites]

I suffer from the fibroids and the thing holding me back is that I have heard it can affect your sex life. What is sex like after Hysterectomy for you all?
posted by crazy sniffable at 8:45 PM on June 13, 2016

PLEASE consider looking into uterine artery embolization, a mostly non-invasive procedure performed by an interventional radiologist. Under a general anesthesia, I had a teeeeeny (like, less than 1mm -- no stitches, no bandage) incision in my upper leg, and (for want of a better word) a wire was conducted up to my uterus where tiny sand-grain size doo-dads were placed to block the uterine arteries. Within weeks, the fibroids, my uterus, and my whole abdomen, had started to shrink, and all of my discomfort and frustration disappeared. My insurance covered it completely. This was in 2009, and since then, life has been nifty.

My wonderful OB/GYN had offered a variety of solutions that did not work, and various specialists kept calling for a hysterectomy. One male gynecological oncologist (whom my doctor has asked for a consult) was so rude about his insistence that I needed a hysterectomy, I ended up pointing out (in front of his residents) that while I understood that most of his patients had cancer, I did not, and when you have a hammer, everything looks like a nail. (A colleague of his later told me that I recommended hysterectomies for all women over 40 because it was more "convenient." Indeed? For whom.)

Although I was in my 40s and unlikely to have children, and had an unrelated health concern that, combined with the fibroids, caused a deep vein thrombosis, I was unwilling to have a hysterectomy barring other conditions making it more essential. I did the research myself, lobbied the doctors, found an AMAZING interventional radiologist, and although I had (most of the rare) complications, I would do it again in a heartbeat. And FWIW, my fibroids were, indeed, huge. If yours are not, it's unlikely you'd have any of the complications.

My uterus is not your uterus, but UAE is a solution that far too few women are made aware of, and it's only right that you have all the information (including about hyst., which I can't provide). Good luck and well wishes in making your decision.
posted by The Wrong Kind of Cheese at 9:02 PM on June 13, 2016 [3 favorites]

I had a (somewhat confusingly named) "total" hysterectomy (removed uterus, cervix, and fallopian tubes but kept ovaries) just over a year ago (at age 30) for very similar reasons. No regrets! Leaving behind the pain, stress, fatigue, and copious bleeding has been amazing. Periodically (heh) I suddenly remember that I will never have a period again and I cackle gleefully.

Mine was a laparoscopic (4 tiny, tiny incisions: 1 in belly button, 1 above each hip bone, and 1 above pelvic bone) with vaginal removal. That was one thing I didn't realize at first: that the location of the surgical incisions -- i.e. where they actually put in the instruments to do all the cutting -- and the incisions where they actually remove the uterus might be different. For example, my sister also had a hysterectomy and hers was done entirely through the vagina. If I recall correctly, your options will depend on size and location of the fibroids, and the type of surgery will affect your recovery.

Surgery and recovery was a breeze. I had a fantastic surgeon who inspired utter confidence, which I think is important. (James Robinson, if you're in the DC area.) He told me I would need 2 weeks off from work, and that was the perfect length of time. I live alone and had a dog at the time, so my mom stayed with me the first week. The second week, I managed ok, but if I had a do-over I would have had someone stay the full two weeks. You're not supposed to lift anything over 8 pounds or strain your abdominals at all, and you use your abs for so many things besides lifting: opening windows, walking a dog who's pulling on the leash, etc., so it would have been more convenient to have someone around.

Checked in for surgery early in the morning, was out around noon. Went home and slept, but was up and walking around the same day, and the next day I walked (slowly and gently) around the block.

I had very little pain during recovery. Mostly my abs just felt sore, as though I had a couple thousand sit-ups. They gave me ibuprofen and percoset, but I barely touched the percoset. I took the ibuprofen on schedule as prescribed (I think it's important as an anti-inflammatory even if you're not in pain...?), and occasionally used the perc at night to help me sleep. (I'm normally a stomach/side sleeper but that was uncomfortable while I was healing.) My doctor sent me home with a laxative/stool softener; if yours does not I recommend picking some up, as constipation post-surgery is normal. (My sister' doctor failed to mention this and she had a very uncomfortable few days as a result!)

Holding a pillow to your abs when you have to laugh or cough helps.

The first couple weeks I could get around, but slowly, and I tired easily. After the first couple weeks I had to remind myself to take it easy, because my energy was back up and I felt really good, but I was supposed to refrain from anything strenuous until 8 weeks (I think).

I had zero complications. I have tiny scars that are barely noticeable. I feel like a superwoman. I do have the occasional mild dull ache that Heloise9 describes (mine also seems to flare up during times of stress) but it's nothing compared to the fibroids, and I just figure it's scar tissue. If that's the price of admission for getting my life back... totally worth it.

Things to discuss with your doctor:
--type of surgery. As I said, I think it largely depends on size and location of your uterus and fibroids (and possibly the expertise of the doctors in your area).
--whether to remove ovaries. My understanding is, there is no need unless cancer is suspected or you have family history of ovarian cancer. Removal of the ovaries will send you into early menopause.
--whether to remove cervix. Several factors at play here. This will affect how they remove the uterus/fibroids; my dr. said if I kept it, we could not remove vaginally, meaning a bigger scar and longer recovery. Keeping the cervix means you may have spotting. As it is technically part of the uterus, keeping it means slicing into the uterus, which carries the risk of spreading any cancer that may be lurking. Tiny risk, but nasty cancer. I was mostly concerned with sexual function. As of last year, the research was split about 50/50 on whether removal had a negative effect. Since I had had some cervical discomfort during sex even before the fibroids, I opted to remove.

Speaking of sex:
I suffer from the fibroids and the thing holding me back is that I have heard it can affect your sex life. What is sex like after Hysterectomy for you all?
I had the same fear. Ultimately, I realized that the pain and bleeding from the 'roids had made my sex life somewhere between miserable and nonexistant anyway, so there was only room for improvement. My doctor said most people find their sex lives improve for this same reason; additionally it becomes more spontaneous because you no longer have to worry about birth control. My own anecdata: can't speak to penetrative sex, but orgasms are unchanged and sex drive is the same (or higher; see: no pain/bleeding/exhaustion). My sister also reports no ill effects on her sex life, and she's 5+ years on at this point.

One thing I would recommend NOT doing is reading HysterSisters. I did that initially and it just freaked me out. I found it much more helpful, and more realistic in terms of my own experience, to talk to people I knew IRL who had had the same or similar procedure, to discuss with my awesome doctor, and to consult the parts of the internets I find to be more reputable/useful/knowledgeable (i.e. Metafilter). I would be happy to pay that forward, so if anyone is on the fence and has questions or wants to discuss, feel free to memail.

TL;DR: A+++, would remove uterus again.
posted by leeloo minai at 3:43 AM on June 14, 2016 [1 favorite]

One last note... when I brought it up, I found that SO MANY women in my life had had a similar procedure, and once I brought up mine they were all game to talk about theirs. (I didn't realize that monster uteruses (uteri?) were so common!) The most helpful information I received ended up being from a coworker who very kindly offered to talk with me and share her story even though we barely knew each other, and that in itself ended up being a really warm, positive experience. So, if you're comfortable, maybe float the topic with female friends/family/coworkers and see if anyone pipes up?
posted by leeloo minai at 3:55 AM on June 14, 2016

You don't give a list of meds that you have tried, but I assume you've run the gamut with continuous or extended-cycle birth control pills (ie theoretically only one period every three months), tranexamic acid, and been offered a mirena IUD. I would exhaust all medical treatment options before going to surgery because there are more potentially life-altering complications from surgery. That being said, surgery is the most definitive option.

If you are less than 50, it's better to keep your ovaries (unless you have a family history of cancer) as your overall life is shortened with oophorectomy. No one knows quite why, but it's theorized that estrogen is protective against cardiovascular disease.

There's a large AJOG article which shows that greater than 90% of people who undergo hysterectomy are satisfied with the results: Patient satisfaction with results of hysterectomy.
AUKjerulff KH, Rhodes JC, Langenberg PW, Harvey LA Am J Obstet Gynecol. 2000;183(6):1440.

OBJECTIVE: The objectives of this study were to measure patient satisfaction with the results of hysterectomy and to determine factors associated with dissatisfaction. Study Design: A total of 1299 women who underwent hysterectomy at 28 hospitals in Maryland were interviewed before and at 3, 6, 12, 18, and 24 months after the operation.

RESULTS: At 12 and 24 months after the hysterectomy 95.8% and 96.0%, respectively, reported that the hysterectomy had completely or mostly resolved the problems or symptoms they had before surgery; 93.3% and 93.7%, respectively, reported that the results were better than or about what they expected; 85.3% and 81. 6%, respectively, reported that their health was better than before the hysterectomy; and 87.9% and 93.1%, respectively, reported being totally recovered. The factor most strongly and consistently associated with patient reports of negative outcomes was readmission because of a postdischarge complication.
CONCLUSION: Postdischarge complication necessitating readmission plays an important role in patient dissatisfaction with the results of hysterectomy.

Most studies show that sexual function after hysterectomy is the same or improved after surgery (likely since you won't feel so miserable so much of the time!).

Best of luck!
posted by eglenner at 6:49 AM on June 14, 2016 [1 favorite]

On the question of post-hysterectomy sex, my experience is that it's better. Much less painful to me. Apparently I had a "short" vagina, and when sex got vigorous he bumped my cervix. Now that my cervix is gone there is no pain whatsoever. I suppose YMMV, but this n of 1 is happy.
posted by citygirl at 7:54 AM on June 14, 2016

Well, I worried intensely about this, especially the decision about whether to keep my cervix.
You can't make the decision by reading individual stories.
You have to go with the clinical data, and my doctor told me that the best trials indicated no significant correlation between loss of the cervix and loss of orgasm
So I put my trust in the science and had a total hysterectomy (ie removal of cervix)
That's all you can do - trust the clinical trial data.
As it happens, I had a great outcome, no change in my orgasm at all, and obviously sex without tidal wave periods is fabulous.
But you can't mess with your head by reading individual good - or bad - outcomes. You will always find people who confirm your fear or hope. As I said in my earlier post, dwelling on Internet stories caused me some misery during my recovery.
posted by Heloise9 at 11:10 AM on June 14, 2016

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