Hysterectomy experiences and advice

August 6, 2005 9:33 PM

Experiences with hysterectomy. Either yours or SO's or close friend, relative, etc.

I'm contemplating one due to mother and grandmother history of cervical cancer, and some other complicating factors. DES daughter, abnormal pap smears. I have an appt with my gyno in a few weeks after being diagnosed with ovarian cyst and fibroid on my uterus, and I expect that she may suggest a hysterectomy.

I guess the question most on my mind is, if your cervix is removed, can you still have an orgasm? When I come, I get a really stong sensation of cervical contraction. Even when I just get a brief little fleeting sexual thought or turn-on, I always feel a wonderful little flip-flop right there. And I'm afraid that I won't be able to feel anything at all without a cervix.

But also what hormonal changes should be expected? Especially if ovaries are also removed. Did you take hormones? If so, for how long?

How was recovery? I live alone and with a recent round of surgery due to perforated appendix found out that I've got to be able to care for myself. Staying with others just didn't work out. Did anyone else have the experience of coming home on their own and how did it go? How long before you could go back to work full time?

Any other things I should be considering, planning for, concerned about, etc?

YES, I WILL BE ASKING MY DOCTOR THESE QUESTIONS AND MORE. But my appointment with her isn't for another few weeks, and I'd really like to hear from someone else who's gone thru this, either first or second hand.

Thanks all!

posted by anonymous to health & fitness (11 comments total)

Certainly explore Hyster Sisters. I know my mom found it really helpful both before and after her hysterectomy.
posted by katieinshoes at 7:51 PM on August 6, 2005

My mum had a hysrectomy some time back. It was actually a relief because she had been putting it off for years and it was only making her suffer.

She did need some recovery time - the pain from the scars lasted a while. She did manage to follow me to Canada (from Malaysia) a couple of weeks after for a few days' trip, so she wasn't bedridden or anything.

There were - and are - some hormonal fluctuations. Sometimes my mum would try to stop taking the HRT but she gets major moodswings sometimes.

Don't lift heavy objects...don't put any strain on your lower abdomen basically. But don't worry; it won't impair you.

Best wishes!
posted by divabat at 8:32 PM on August 6, 2005

Been there, done that. 'Bout a year ago, and I'm older than you, 58. (One year tomorrow.)

I refused for 10 years, while I bled for sometimes months at a time because of fibroids, for basically the same reason you have. I was concerned it would make a difference in my sexual function. (Just because you're old doesn't mean you don't care about those things, you do.) It didn't. I'm completely happy, I don't bleed any more, and I can actually ejaculate, which I haven't done in years. (I don't care to hear from those who don't believe in female ejaculation, nor do I care to hear from those who think you're just wetting yourself and have a bad case of denial, I know what I know, thanks.) The details don't matter, it's just that my sexual function was actually better afterwards, not worse. It's more like when I was younger, which is the part you care about. The orgasms are as good as when I was younger, and better than they were the last few years.

They couldn't get my ovaries, they were too far up to reach, because it was a vaginal procedure, but I'm so old they don't function anyway; I've been on HRT for years. Doc says at my age, they just ultrasound them once a year, and eventually they'll simply disappear. If you're younger, they can still do ultrasounds and see exactly what's going on in there, ask your doctor when you see her.

They told me 4 to 6 weeks on the recovery, I was back to work in 3 weeks. You can only watch daytime TV on narcotics for so long, and I work sitting down. I had help in the evenings, but was alone in the daytime. I walked bent over for the first couple of weeks, but I was able to nuke a can of soup, bath and toilet myself without help, and I went home from the hospital at 36 hours. Forget housekeeping, but you can keep yourself clean and fed for the first couple of weeks. You're not supposed to lift or bend over for several weeks, but I could shove my feet into bedroom slippers (or some kind of flip-flops) without help.

If you have an abdominal incision, it's going to bother you more, and longer, but they do a lot of these vaginally these days. If you have yours vaginally, you may notice a "discharge" for a while. If it gets to be 6 weeks, stop by the doc and get her to pull out the sutures. They are dissolving sutures, and if they don't fall out by then, they're due anyway, she'll just pull them out and it will stop. It's nothing awful, it's just the sutures dissolving.

Summary: I only wish I'd done it 10 years earlier, and not been afraid it would screw up my sex life, which was the only reason I held off.

I had abnormal pap smears for a long time, and a family history of that package, breast/prostate/colon/female cancer. One of the big factors in my decision was, it's going to turn on me one of these days, I'm better off losing it while it's benign.

Your doctor will tell you all the usual stuff, but I'm glad you asked about other peoples' experiences. That's what I did before I did it, and most of what I heard was positive, and that was a factor in my decision.

Disclaimer: This is my sock puppet account. I use it to reply anonymously to questions like yours. YMMV, IANAD, whatever. All you asked for was other's experiences, and I'm glad to share mine. I wish you all the best, and get well quick and all that.
posted by deep_cover at 8:35 PM on August 6, 2005

A friend who had endometriosis and fibroids deeply regrets her hysterectomy, although she hasn't really gone into specifics why. I think she found that it didn't help as much as she'd hoped, and that she wished she'd been able to undergo a less drastic procedure like myomectomy.

My mother had a non-elective hysterectomy, and has had an overall improvement in her life as a result. She's never complained about adverse affects of any type (of course, we don't really discuss sex, so I don't know about that).

Of the people I know well who've had them, all said it took a long time (months) to fully recover, although they all returned to work after 8 weeks or so (from the same site as above, this forum thread is entirely devoted to the post-op/return to work question). I would be surprised if you could have a completely independent recovery period without some serious advanced planning (perhaps someone to bring you some meals and do a little housework?).

The google search hysterectomy alternative yields some interesting sites that you may find helpful (at least one of them is anti-hysterectomy, but many look in a fairly balanced way at the pros and cons of hysterectomy and alternative procedures).
posted by carmen at 9:05 PM on August 6, 2005

I've had a couple relatives who have had hysterectomies for different reasons... they were in the hospital for a for a few days, and it took a few weeks for them to get back to work, a few months to get back up to full speed. They were told not to lift anything heavier than a gallon of milk for the first couple weeks, so other people had to help with the laundry/dishes/etc.

It was worth it, though--they're in waaay better shape now than they were before the operation. In one case, the (temporary) mood swings were nothing compared to the ones beforehand (when she had fibroids the size of a three-month pregnancy), although she didn't have her ovaries out. YMMV.
posted by strikhedonia at 9:16 PM on August 6, 2005

If your risk factor is cervical cancer, then the choice may come down to changed orgasms or cancer risk, and that's something you'll have to weigh. Prevailing opinion from a lot of women on postop sex is "different but still good," but no one can judge that but you.

This is major surgery. The women who can accept the inevitable (and impossible to predict) costs are those who can face the results with equanimity; those who think it's a magic wand being waved and they'll be perfectly well only without those pesky organs are those who suffer the worst regrets.

Be careful with hystersisters: it's big on support and real light on solid info--I've seen some pretty bad misinformation gain a whole lot of "me too" weight there. Their site policy is that they aren't in the business of providing good info and their "hostesses" have no background other than willing to work for free.

Try the HysterList blog for better solid info about the surgery and recovery (and a long list of questions to ask your doctor), and the Survivor's Guide to Surgical Menopause for hormone stuff. Yeah, they're both on freebie sites and use yahoo lists for support, but that also means they're not pitching sponsor products and nagging you for site support.

If you keep your ovaries, stats show that 50% of women who retain their ovaries after a hyst undergo natural menopause within 5 years. Clearly that means that any one woman's experience can be anything from immediately after surgery to when she'd otherwise experience menopause, but it's useful to know the odds. Surgical meno is an entirely different thing: you're taking a complex feedback system and putting it on manual, and there are just things that aren't going to work as well. As for taking HRT--if you don't have your ovaries any more, you are possibly looking at the rest of your life. Surgical meno isn't something you get over--it's like deliberately becoming a diabetic by having your pancreas removed.

Ovarian cysts may or may not be a good reason for oophorectomy. A single fibroid may well not be an indication for a major surgery from which no matter which route is used, the internal healing will be 80% complete by six months and not 100% for a full year. Fatigue will dog you at least half that year. And pushing only buys you more internal scarring and slower healing, not faster results.

You don't need advice; you need to do a lot of reading, especially about alternative procedures and your cancer risks. Steer clear of HERS unless you really relish scare tactics--they'll tell you that every broken toenail you'll have for the rest of your life will be a result of a hyst. Best way to approach a hyst: when you've tried/investigated every lesser procedure and a hyst holds out your final hope for better health. Many women have great hyst results--and I'm one of them--but don't let anyone tell you that there's a free lunch here. There will be a scar, internal damage of at least a slight extent, a long recovery, some numbness where nerves are cut...and that's if everything goes great. Make sure you feel your situation is dire enough that if everything doesn't go great, you can still live with that.
posted by salt at 9:56 PM on August 6, 2005

How was recovery? I live alone and with a recent round of surgery due to perforated appendix found out that I've got to be able to care for myself. Staying with others just didn't work out. Did anyone else have the experience of coming home on their own and how did it go? How long before you could go back to work full time?

I had a partial hysterectomy in December 2003 (I still have my ovaries and cervix), and went back to work on 1 March 2004, partly thanks to being in a union that has a good health & safety policy, so I wasn't rushed back to work. I started back part-time, and was full-time by 1 April, albeit working from home two days a week, which continues to this day.

I live alone, and was concerned about how I would cope. I planned ahead - before I went into hospital I stocked up on all the heavy/bulky things I needed (non-perishables, of course).

I called on friends to help out and they were glad to, I think because I asked lots of people to do little bits each, rather than one or two people to do a lot.

So when a friend would call round to see me, I'd ask if they could, for example if they were a 'cat person', empty the cat's litter. Other people I'd ask if they could help me change the bed linen (I'd do the pillow cases and they'd do the rest), or run the Dyson over for me. Each visitor would be asked to do just one 5-minute task.

I got my groceries online (Tesco.com is best in the UK) and said on the form that I couldn't carry anything, so it was all brought into the kitchen where I could unpack piece by piece.

I made sure I had lots to read, I have the computer and satellite TV, so I was never bored, although I did develop a serious 'Countdown' addiction that continues to this day.

There's not much I can add to what others have said about the physical recovery - the pain was bad but manageable provided I took the meds I was prescribed. I was surprised at the numbness around the wound, but that has gone now.

Tiredness was a problem for me for about nine months.

It wasn't until about a year after I had the op that I realised how very ill I'd been for years and years. When you live with it, you get used to it and work your life around it. I have to say that the hysterectomy was the best thing I could have done for my health, after years of gynae problems and trying every different/new treatment available.

Oh, and one last thing that nobody ever told me. No matter how many laxatives you take, the first couple of bowel movements after the operation will be agonising. A deep anasthetic slows down the metabolism, so it was a week before the first one (I couldn't leave hospital until I'd had one) and a week until the second one. It was the worst pain I've ever had (I've got no kids, but I would guess giving birth is akin to this). Sorry if this is TMI, but I wish someone had told me about that so I could be prepared for it.
posted by essexjan at 1:49 AM on August 7, 2005

My mother was so happy after her hysterectomy she offered me one the first time I got my period. Her recovery wasn't bad, although the exploding egg didn't help.

My SO had one years ago. It does not impair her sex life at all. They took the cervix, too. She has had to remain on HRT. Otherwise, she gets very bad mood swings and worse hot flashes. The later really annoy her.
posted by QIbHom at 8:06 AM on August 7, 2005

I can't offer you any personal experience, but if you are uncomfortable/unwilling to rely on friends for help, you might consider looking into getting a home health agency to provide services for a week or two after the surgery. (I work for a company that helps arrange this service for people.) There's usually a 4-hour minimum per visit (so it can be 1 4-hour visit/week, or 2-3 visits, or up to 24/7--although you definitely won't need that much if it's a straightforward procedure), and they can do things like change the bed, run some laundry, do some meal prep/light housekeeping, help you take a shower, etc. Rates can range from $10 - $25/hour, depending primarily on where you live (rural areas are usually more expensive - NYC is something like $12-14/hour because there's so much competition), and I believe that some health insurance policies do cover it--although of course I don't know if yours does. It might be worth investigating, anyway.
posted by fuzzbean at 9:47 AM on August 7, 2005

Mom had a hyst 25 years ago. The doc only left one ovary behind. I remember she was in the hospital for a week and that we all stayed with my grandparents for two weeks afterwards. She has always spoken positively of having had it done and I know, from being awakened on many occassions, that her sex life was not diminished by it. She never went on HRT and menopause didn't kick in until about 8 years ago.
posted by onhazier at 7:08 PM on August 7, 2005

Metafilter: You can only watch daytime TV on narcotics for so long.
posted by matildaben at 7:50 PM on August 7, 2005 [1 favorite]