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Confused/scared about side effects - Partial hysterectomy in two days Confused/scared about side effects - Partial hysterectomy in two days

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  #1  
Unread 04-16-2006, 05:10 PM
Confused/scared about side effects - Partial hysterectomy in two days

Hi!

My partial hysterectomy is scheduled for this upcoming Wednesday in the early morning, but I'm confused about the potential side effects. I have a uterine prolapse...it's been a chronic and gradually worsening problem since I gave birth six years ago. No pain, no discomfort, but it does extend outside my vagina and is pretty uncomfortable. My upcoming surgery is hopefully going to be done laproscopically, though they won't know for sure until I'm in the surgery room...the plan is to remove the uterus but to leave the ovaries.

My ob-gyn reassures me that after six weeks, I should be pretty much back to normal. She's told me that her patients have full recoveries with no side effects...no lasting pains, sexual drive no different than before the hysterectomy, no adverse effects. My good friend, who used to work at a gynecologist's office, agrees and was excited that I'm going to have the surgery. However, my husband and I are extremely disturbed by the conflicting information we see on the hystersisters website and on the "H-E-R-S.com" website as it seems quite different from the picture the ob-gyn and my friend have painted. On the HysterSisters message boards, we see numerous women who, post-surgery, complain about various problems, including bladder issues and a loss of both sexual drive and sexual enjoyment without pain. On the "H-E-R-S" website, the charts suggest that around 50% of women (plus or minus 10%) post-surgically experienced sexual problems, personality changes, bone and back pain, memory loss and fatigue, insomnia, anxiety, and constipation. And all the women from the "H-E-R-S" survey say they were not informed of these side effects by their doctors, as is the case with me.

I don't know what to believe any longer. My surgery is scheduled for three days from now. Since I'm currently in no pain, the surgery is elective, though I don't know if it would become a necessity in the near future. I really need immediate guidance as to what is the reality of what I can expect so I can make an educated decision. What should I REALISTICALLY expect post-surgically? How much weight should I give to what I'm reading about long-term sexual, cognitive, and physical after effects on the H-E-R-S and HysterSisters message boards as contrasted to the minimalization presented by my ob-gyn?

Please help me. Any advice that those who are "in the know" can quickly give me would be very much appreciated.

Sincerely,

LifeCoach
  #2  
Unread 04-16-2006, 05:26 PM
Confused/scared about side effects - Partial hysterectomy in two days

LifeCoach,

I am in the same boat as you. My prolapse is not as bad but my gyn said it could become a life threatening problem if not taken care of. I also looked at the information on the Hers Foundation site. At first it scared me and started having second thoughts. But then I took a look at the NUMBERS. There are a lot more women here than in any of there studies. And some of those studies included women who were only a few months out of their surgery. So I considered the sexual and libido effects to be incorrect. I have learned here that it could take 2 to 3 mos for your ovaries to start fully functioning again. (thus the poss. sexual problems). As for the other things listed I think alot of that has to do with age. And some things like the bone loss has to do with removal of the ovaries. It also could be do to diet. Lets face it...once we hit 30 we need to be diligent about our calcium intake. I know my personality will change...It will be better!!! Aunt Flo and the pain from the prolapse make me a very irritable person. So when this is all said and done I know I will be a much happier, and more pleasant person to be around.

I hope that this has helped ease your fears a little. Besides you have to remember this. No matter what happens...in the end you and your DH will figure a way to get thru it.

LOTS OF ((((((((HUGS))))))) for you!

Fallflower
  #3  
Unread 04-16-2006, 05:35 PM
Confused/scared about side effects - Partial hysterectomy in two days

LifeCaoch,

I had a Total Abdominal Hysterectomy on October 28th, 2005. It was a good decision for me. I have had an uneventful recovery with no side effects. I wish you luck with your surgery.
  #4  
Unread 04-16-2006, 08:42 PM
Confused/scared about side effects - Partial hysterectomy in two days

Yes, some women do have negative, long-term side effects from hysterectomy, but they seem to be a lot more common when the ovaries are removed. And remember that the vast majority of women have a smooth recovery, and so they don't come back and post about it--it's the people who are in pain who keep returning to post, so you're automatically getting a biased sample. In many large studies, some 20% of women report a decrease in sexual satisfaction after their hysterectomies--but about 25% of women report an increase in sexual satisfaction. So much depends on the individual, but for women who were happy sexually before surgery, they tend to be happy afterwards, or even happier.

I'm just over 2 weeks post surgery, and I've really felt fine. Some pain, but not much, a minor complication from an earlier hernia surgery this spring. To be honest, having the flu last winter was a lot more exhausting and debilitating than this, and hernia surgeries hurt much more. I also wasn't having horrible symptoms, so the decision was hard (the uterus had gotten to be the size of a 20 week pregnancy, and it may have been causing the hernias, but no one really knew for sure. I never had heavy bleeding or pain, just pressure, so I was uneasy about a major surgery with potentially huge side effects). But I'm very glad I did it. Prolapse is different than fibroids, but the vast majority of women do feel much better a year after their hysterectomy than they felt before it. The H-E-R-S website also really disturbed me, until I realized they were equally negative about every single other treatment for fibroids. What do they think we should do? Take a few herbs and suffer silently? Hysterectomy is major surgery, but it's the safest major surgery for women. Good luck.
  #5  
Unread 04-17-2006, 12:09 AM
Confused/scared about side effects - Partial hysterectomy in two days

Hi (((LifeCoach))) It can be very scary and confusing to read all the posts here and the pages at H-E-R-S. You are lucky, though, because your situation is not currently life threatening, so you have time to think things through until you are comfortable with your decision.

I had a very severe uterine prolapse, which came on rather suddenly. I also had a cystocele and rectocele (bladder and bowel prolapse). I had a vaginal hysterectomy, which is the usual route for severe prolapse. I'm confused as to why your DR would suggest removing yours laparascopically and leaving the cervix (which is already prolapsed). In order to remove your uterus laparascopically they will first have to pull it back all the way up to the top of the vagina. Then, in order to keep your cervix, it will have to be suspended - that is, the ligaments that used to hold it up will have to be shortened and reattached to something. I would be surprised if that procedure can be done well laparascopically. Has the DR talked about how he/she plans to restore your pelvic support through a lap hyst? This would be the first I've heard of a hyst for severe prolapse being done any other way but vaginally. Based on that alone, if I were in your position I would get a second opinion from another surgeon, preferably one who is expert in pelvic floor disorders.

It's hard to look at the possible outcomes of hysterectomy in terms of percentages. It's true that the majority of women who have a hysterectomy do just fine; complications occur in a minority of cases. (BTW, the complication rate is higher for laparascopic hysts than for vaginal ones; see our Pre Op Resources directory for the data on this.)

Recently a study came out which stated that, on average, women experience an improvement in their sex lives after a hysterectomy. However, that "on average" thing is the key. You see, some women are anything but happy with their sex lives after the surgery, and to those women, few though they may be, it's a disaster. They really don't care that their odds of being happier afterwards were favorable. It's important to go into surgery with a positive outlook, but be aware that bad things do occasionally happen to good people.

About the ovaries... a substantial number of women do experience their ovaries shutting down after a hysterectomy, due to a disruption in their blood supply. Many times, after a period of several weeks to months, the ovaries may start working again. Sometimes they don't. "On average", women who keep their ovaries after a hysterectomy may find that they keep working, though they may produce slightly less, necessitating at least the use of a little vaginal estrogen for dryness, and find that they enter a natural menopause a few years earlier than they would have without the hysterectomy. Again, that pesky "on average"... the minority of women find that their ovaries don't work at all, and must deal with surgical menopause. This means either trying to balance their hormones using HRT's, or, if they cannot or choose not to use HRT, finding medications that will make their symptoms tolerable and preserve their cardiac and bone health.

I'm not suggesting that you shouldn't have a hysterectomy -- that's not my call, and besides, for severe prolapse, there is usually no other viable option other than to "live with it", which isn't much of an option if you are a young, active woman. I just think your DR should be informing you more completely of the possible outcomes of hysterectomy, so you aren't blindsided if things don't go perfectly. It's much easier to accept a less than perfect outcome if you had already understood that it was a possibility and accepted that possibility and decided to go ahead with the surgery anyway to (hopefully) improve your quality of life. I know because it happened to me.

If you are not absolutely sure you want to go ahead with this particular surgery, with this particular DR, at this particular time... at least postpone it and get another opinion. Find a DR who will take the time to fully answer questions rather than sweeping them under the rug. I think you will be glad you did.

Good luck with whatever you decide to do.
s,
-Linda
  #6  
Unread 04-17-2006, 07:47 AM
Confused/scared about side effects - Partial hysterectomy in two days

Dear LifeCoach:

I had a vaginal hyst 7 years ago, removing uterus & cervix only. I had been diagnosed with prolapse, but I was still only at the stage of *kind of uncomfortable*, and there was no urgency for my surgery. I kept my ovaries, and they have puttered along ok the last few years. Just recently, I have noticed some changes that are probably related to estrogen deficiency. I am nearing age 50, so I suppose it is inevitable , and not really related to hy hyst.

85% of hysts are elective, done for quality of life, not to SAVE a life. It's a difficult decision, and being informed of the risks involved only makes it scarier to decide. Weigh all the pros and cons... ask yourself what would happen if you DON'T have a hyst. Unfortunately, prolapse victims don't have lots of options

Get smart about your symptoms and your options, and make the best choice for YOU. I am sending huge cyberhugs
  #7  
Unread 04-17-2006, 08:38 AM
Confused/scared about side effects - Partial hysterectomy in two days

Lifecoach--
Just a clarification--your description actually appears to be that of a total hysterectomy, not partial. Partial (now typically called subtotal or supracervical) refers to retaining the cervix (not the ovaries), which would not be what your surgeon would do for a prolapsed uterus.

The ovaries are a separate procedure (often done at the same time as a hysterectomy); women either have an oophorectomy (removal of the ovaries), or not.

If you're not ready for the surgery yet, it's fine to delay it until you can get a second (or third) opinion and do more research. If you do have any side effects, you'll feel a lot better about them if you know you investigated all options first.
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