I might have to have a hysterectomy, tell me your experiences

In My Humble Opinion (IMHO)
#1

I was over on this thread bitching about my endometriosis and other female troubles, and we got on the subject of hysterectomies. I am really interested in your experiences with the surgery, how it has affected you postively, negatively, etc.

I’ve had three laparoscopies, an ovary removed, pelvic venous congestion, endometriosis, and pretty much constant pain. All of the doctors I have consulted tell me that I will eventually need a hysterectomy if I want to be pain-free. The past two weeks have been especially hellish for me regarding my pain levels and I am seeing a new gyno on Friday. I am considering the hysterectomy as a plan of treatment.

Mostly I’m worried about my sex life. I am concerned I will lose the drive or that it won’t feel the same to me. I’m also worried about HRT and if I’ll have to take it if I still have one ovary producing hormones. It’s such a permanent decision, and that might be what scares me most.

Any help or stories you can share would be much appreciated. After reading all I can on the subject and talking to doctor after doctor, I look to the Dope for wisdom in this matter!

Thanks in advance. :slight_smile:

#2

As I said in the other thread, mine was the best thing I could possibly do.

Prior to having the surgery, I had both of my daughters by c-section (the first just before I turned 17, the second just before I turned 18). When I was 21–the earliest they would let me have this elective surgery at that time–I had a tubal ligation. Unfortunately, my loser doctor left a clip in during the surgery. Later that year, I had a ruptured ovarian cyst which was extremely painful.

Over the course of the next year, I started having lots of pain. I went to a new doctor, who decided to do exploratory surgery to figure out what was wrong. I woke up to find that they had removed my tubes because of massive adhesions; my tubes were stuck to my bowel. This is also when they found the clip left by loser doc. My new doctor was very coy about whether the clip had anything to do with the adhesions; he pretty much took the line that the c-sections and tubal combined with a ruptured cyst were probably enough on their own to do the damage. Didn’t matter anyway; loser doc had already left the country (said he was joining the Peace Corps) and I had no way of tracking him down.

Later that year, they discovered abnormal cells during a pap smear. They did a biopsy and decided to freeze my cervix. What fun!

Within a year we knew that removing my tubes had not done the trick. The pain I was in, combined with the known state of adhesions in my gut and the abnormal pap smear, convinced me and my doctor that I should have the full hysterectomy. They removed my uterus, cervix, and both ovaries. They had hoped to save an ovary, but the “good” one (the one that wasn’t stuck to something else) was on the side where I was having the most pain and had the most adhesions so they figured leaving it there was just asking for future surgery.

I had an easy recovery from the actual surgery (I was a pro after 4 previous abdomonial surgeries) and went back to my life.

My sex life did not suffer. As a matter of fact, it improved. Before the surgery, I was in a lot of pain most of the time. This made me not enjoy sex as much–I even started associating having sex with pain. Removing the source of my pain resulted in me feeling better all around. That resulted in me wanting more sex.

I was a little leary about having sex the first time after surgery. It was a little different, mainly from fear I think. And, as I said in the other thread, there was a reduction in lubrication. My vagina is shorter now and ends without a cervix–most guys never noticed, but I guess it could be a problem for somebody. I still had excellent sex. My sex life improved even more when I got mr.stretch. :slight_smile:

I also suffer from depression. The hysterectomy did not alleviate my depression per se, but it did remove one worry in my life (the pain), reducing my overall stress, and thereby having a positive effect on the depression as well.

My mom had a full hysterectomy when she was 36 for various reasons, some I’m sure wouldn’t fly now. She took HRT until she was 55; she was on the combined HRT and worried about the possible side effects. Now she’s done with HRT and has gone through the equivalent of menopause with no problems.

I’ve been taking HRT (estrogen only) for 15 years. The only physical side effect of the hysterectomy I’ve noticed is hot flashes, which suck. We’ve played change-the-estrogen-dose to try to correct that but ultimately I decided to just give up and deal with them.

Mine was a very easy decision. I didn’t have to consider if I wanted to have more kids–I had already made that decision when I had the tubal. I knew I couldn’t live with being in that kind of pain every day.

If you trust your new doctor, which may take a little while, you should be able to make the right decision. I wouldn’t hestitate to have my hysterectomy done again. It changed my life for the better.

#3

I’m hoping to keep my remaining ovary and cervix.

I know what you mean about pain during sex. It’s terrible sometimes, and I know that we’d do it more often if I didn’t have so much pain. I pretty much do it anyway because it’s worth it to me, but it would be great to have sex without pain.

#4

WAAAAAAAAAAAAY TMI. You have been warned.
It was the best decision I could possibly have made.

After the birth of my second child, I had a tubal done. Things went downhill fast. I was suffering from terrible cramps, worse than I’ve ever had. As for my periods, I had always had 3 heavy days, 2 light days. That’s it. After my tubal, I was bleeding 25 days, ok 5 days. At one point, I passed out in the bathroom at work and nearly brained myself on the sink. My ob/gyn suggested a hysterectomy. I agreed, as I knew I didn’t want any more children.
The insurance company was not so agreeing. It took (I kid you not) 5 separate “second” opinions. The third one agreed with the insurance company that I didn’t need one. “Why?” She asked. “You’re barely 30. It’s not that bad. Besides. What if you decide later you want another child? Or if you lose one of your children, what will you do then.” Excuse me? Ex fucking SCUSE me? They’re children. Not appliances. I can’t get one in olive green if I don’t like how it looks in my kitchen. A baby will not replace the child I lose. My Gyn was not too impressed with her, either.
After going back and forth with the insurance company for another few months and two more “second” opinions, my Gyno finally had had it. He gave me a depo injection. Which stopped the bleeding for a few weeks. At that time, it was pretty pricey. $500/injection, to be exact. He then got on the phone with the insurance company (Can’t name them, but they have a christian symbol and an indigo color to their name) and told them if they didn’t approve the surgery, he was going to have to give me these injections every month for an indeterminate time period. Smart man. Hysterectomies are much cheaper.
After they approved it, I felt SO much better. My mood swings evened out, I wasn’t tired all the time, I didn’t have the constant pain, I was just a happier person. I gained weight, but considering what I went through in the two years prior, I considered it well worth it. It turns out I had a number of adhesions on my uterus, so it was definitely medically necessary. I don’t regret it a bit. I kept both my ovaries.

#5

I have no experience, as I’m male, but I popped in to offer support.

Sending warm thoughts your way.

#6

Is weight gain a common side effect?

Also, did you guys have your hysterectomies by laparoscope or by another method?

And how long were you off work? How bad was the pain after surgery? How long were you in the hospital or did you do outpatient?

After my last laparoscopy when I had my right ovary out, I was in some serious pain. I imagine the hysterectomy will be worse.

#7

Weight gain has been common in all the women I’ve talked with who’ve had this procedure. It’s controllable.
I had an abdominal hysterectomy. I have an itty bitty scare, barely noticeable unless you know it’s there now, below my belly button. There was some incisional pain, and some cramp-like pain for a couple weeks, but it didn’t last as long nor was it intense as my menstrual cramps. I believe for the most part, hysterectomies are performed abdominally as opposed to vaginally.
I was in overnight, just to make sure I didn’t develop a fever (infection), and was off work for about 3 weeks. Seriously, when faced with a choice of living with a couple weeks of post surgical pain vs. 20 some years, one week plus a month of being in agonizing hurt which basically precluded me from having a normal life, it was a no brainer.

#8

After my last laparoscopy when I had my right ovary out, I was in some serious pain. I imagine the hysterectomy will be worse.
[/QUOTE]

Well, pain is one of things. Before the Hyssie, I did 24 percocets per month to be able to function. Afterwards I took just about as many in the first two weeks, but I went back to work after 10 days and could stop all pain meds after a month.

Best decision I ever made. The important thing is to ASK FOR RELIEF! If you are in pain, ask for medication. Pain slows the healing process.

#9

Sorry for the minor hijack, but what exactly is “freezing your cervix”? That sounds very…uncomfortable.

Also, my mother had endometriosis, and had a tubal ligation when she was about 40. Lucky for her, she hasn’t needed a lot of treatment since then. Does anybody know the likelihood of me developing symptoms of endometriosis? I’m 23 now, and have had very painful cramps that I keep under control with birth control pills.

#10

Todays (8/24/2004) Wall Street has an article about alternatives on the front page. I didn’t read the article or this thread, but I saw the headline and the title and thought I’d mention it.

#11

Yeah, that was not a fun experience. This was eons ago, but as I remember it, they used liquid nitrogen to freeze the cervix in order to kill the wanky pre-cancerous cells they found during my Pap smear. Sort of like freezing a mole, only even less fun. They gave me a shot of lidocaine first so that the actual freezing wouldn’t hurt. :rolleyes: The shot hurt like a bastard and if it reduced the pain from the cervix freezing then I don’t even want to know how painful it would have been sans shot. :eek:

Anyway, the frozen cervical tissue sloughs off and supposedly that took care of the cells the doctors didn’t like. Because I had those nifty cells, I still had to have yearly Pap smears to make sure I didn’t develop vaginal cancer. A couple of years ago, my doctor agreed that the risk of me getting vaginal cancer after having potentially cancerous cervical cells is not great enough to warrant yearly Paps–now I get to have them every two years. I’m so lucky!

#12

It’s been over 10 years now since I had the last of my internal female organs removed. I’d lost one ovary about a decade or so before that because of a tumor that seemed to grow to grapefruit size in 6 months, but turned out to be “borderline.” I’d also previously had a few abnormal pap test results. The final straw was the uterine biopsy (which is indescribably painful) that the m.d. said I’d need at least annually without a hysterectomy. I was already entering menopause.

Anyway, the hyst. was no big deal compared to other surgeries I’d had. Not an especially painful recovery; it was done IIRC vaginally. Just the normal recovery from general anaesthesia. I’d had worse discomfort after laparascopic surgery for a tubal lig., because of the incredible amount of gaseous substance they pump into the abdomen for that, which has to go somewhere. Yuk.

My doctors have all said there is no point whatsoever to leaving the cervix in place. It serves absolutely no functional purpose if the rest of the uterus is gone. It makes no difference at all in sexual activity, in my experience.

I’d gotten by with one ovary and no HRT for quite a while with no problem. I’m not a doctor, but from what I’ve heard and read one ovary is quite sufficient to supply all the hormones you need. Women have completed full-term pregnancies with only one functional.

I’ve gained weight, but there are a lot of other contributing factors for that. It’s not as if I ballooned up right after the operation. Sex drive is not a problem. My current gyno was a little skeptical that a hysterectomy had really been needed, but I did NOT want to have any more of those uterine biopsies. Ever. She, like my previous doctor, insist that annual pap tests are still necessary, since the vagina can still develop cancerous cells. I am skeptical about that need, and have read numerous articles saying that’s not needed, but I go for an annual physical anyway, so I tolerate it.

On the frozen cervix thing, I’ve had one of those too and did not find it to be all that terrible.

#13

I have a minor hijack – what exactly is involved if they remove your cervix? I’m assuming they don’t just leave your vagina open at both ends, do they close it up top somehow? Or is this not the problem I’m thinking it would be?

#14

I didn’t gain any weight as a result of my hysterectomy, nor did any of the other women I know who had them. YMMV

I had mine through the old c-section scar (which was a six-inch bikini cut incision), as did my mother. One of my friends had hers done vaginally and had no difficulties. A couple of other women I know had the surgery done laproscopically and had no problems either. I don’t know what works the best.

I was in the hospital for 4 days. The pain was bad, because it was full-on abdominal surgery. I had a wonderful on-demand demerol pain relief system–can’t recommend it enough. I was a college student at the time, and I ended up taking spring quarter off due to the scheduling of the surgery and needing enough recovery time–not that my recovery took all quarter, I was back to doing my normal routine after six weeks.

#15

There’s a special procedure – I forget the name of it – whereby the top end is closed up and securely attached to other tissues. Neither you nor your intimate partner will ever know the difference.

#16

I’m surprised no one’s commented on the one positive aspect of hysterectomies - no more periods! It’s kind of nice not to worry about that anymore, or dealing with birth control.

I had a partial hysterectomy when my son was born 8 years ago. I had placenta previa (the placenta was covering the cervix and I had to have a c-section) and when the doctor cut into the uterus, I started hemorraging. Turned out I also had placenta acreta (sp?), where the placenta grows into the uterus and is attached so firmly that it just won’t detach like it normally should and I had to have one right then and there in the OR.
I still have my ovaries, so my sex drive is fine, and I have most of my cervix.
The pain was pretty intense (throbbing, really, rather than actual pain), and the surgeon had to increase the incision to do what he had to do, and I ended up being cut from hip to hip. I was also taking care of a newborn and trying to nurse him, and dealing with the after-effects of losing a lot of blood, and was really tired for several weeks. I’d get exhausted taking a shower.
There’s still a spot on my right side about the size of a fifty-cent piece that’s numb. I guess he cuts some nerves, maybe.
My experiance was rather unusual, though. If it’s planned, and you’re ready for it, you’ll be able ot deal with it.

#17

The Wall Street Journal article referred to above reported on a treatment called uterine artery embolization, a non-surgical procedure which surgeons sometimes forget to tell their patients about. NBC tonight had report on same subject.

WSJ website is by paid membership (perhaps unique in the world of internet publishing), but here is some information:


http://www.obgyn.net/ah/musings/musing_1.htm

#18

That’s what I thought, but not being a doctor or a candidate for a hysterectomy I didn’t know. Another bit of ignorance shed…ahhh, that feels good.

End hijack.

#19

Uterine artery embolism has it’s uses, and but it will not cure all ills. It works against fibroids, not against endometriosis, adhesions, scarring, or pre-cancerous cells.

It does carry a certain amount of risk. There have been serious complications and at least a few deaths. The larger the fibroid the more likely you are to have a complication.

Nor does it always work.

By all means, explore all your options, but sometimes a hysterectomy IS the best solution. I mean, geez, the OP has already tried a couple different procedures. Clearly, your uterus/other reproductive bits are not functioning as they should. If they can’t be fixed why on earth suffer chronic pain?

Get the best advice you can, then make your decision. Yes, it’s scary, but you can do it, whichever way you decide.

#20

The sister of an old friend of mine wrote a book called No More Hysterectomies. According to my friend, her sister got into a lot of trouble for it. She worked at Cedars Sinai in L.A., and the story went that the hospital made a buttload of money from hysterectomies. My friend’s sister was fired, and it was charged that she was only trying to promote her own (expensive) reconstructive surgery instead of “what was best for the patient” – which was a hysterectomy, of course!

I’ve never met the woman. From what I heard, she mayn’t have been above the charges of self-promotion. But even her sister (who had some unkind words to say about her) said that she was wrongly treated by her employer and colleagues.