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Old 02-27-2008, 05:12 PM   #1
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jupiter14 HB User
Hysterectomy or Not? New & need help!!!

Went to a new Gyno and he has done hysterectomies on 4 women I know (with good results.)

I am 51 in Peri, pap smear test was good.

My symptoms: Very painful sex, making it almost impossible, clotting heavy periods,Large fibroid pressing next to my bladder making me pee all the time, and waking up in middle of night every night to pee! Multiple fibroids, bloating, pain, and protruding abdomen.

My Pelvic ultrasound transabdominal results: Enlarged anteverted uterus measuring 15x10x6. Several fibroids largest measuring 21 x 20 x 19 in the fundus. Prominant endometrial thickness of 10mm noted. Right ovary measures 3.6 x 2.0 x 1.5 without any free fluid in cul de sac.

Uterus measures larger on current exam (last exam 1 yr ago)

DR says strongly advises removing ovaries and tubes as well.
He wants to dothe lapro proceedure (not a candidate for vaginal.)

Admittedly I have read quite a bit about this being an over abused surgery.
I feel so awful, I can live with the bleeding and clots, but this peeing thing and the not sleeping cause I have to pee (yes I stop all fluids at 3:00PM), and the no sex is killing me, and my husband.

Could use some insight. Is this the right proceedure?
I will not give up ovaries with out a fight!
The mention of right ovary size, is that bad and why?
Mother has horrible osteo and I am frightened about losing ovaries.
I could really use some help here!

Thanks

Last edited by jupiter14; 02-27-2008 at 05:15 PM.

 
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Old 02-27-2008, 07:15 PM   #2
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jules3 HB User
Re: Hysterectomy or Not? New & need help!!!

hello, i am kinda in the same boat as you..no painful sex tho..im waiting for the results to come back from the transvaginal sono..possibly tomorrow..my issue is the bleeding is so bad my blood counts are always low..and i have the same bladder thing as you..but im 6 yrs younger. i was told that when you hit menopause those fibroids shrink....I guess im confused about some things..my doc keeps telling me my utures is big and bulky..does that mean its big from the fibroids? or is it just big? I did have 3 c-sections..i guess when he calls me with the results i will ask him..it does kinda sound like a silly question huh?

 
Old 02-27-2008, 07:56 PM   #3
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hearts4120 HB User
Re: Hysterectomy or Not? New & need help!!!

Hello Jupiter,

Sorry to hear you are going through all of this. I had a Hysterectomy and bilateral salpingo-oophorectomy, which means they removed the uterus, cervix, ovaries, and tubes. Mine was done in 2000. I was 34 at the time and my family was complete. I had total faith in my GYN doctor, he had been my doctor for years and I have complete trust in him, he is a very caring man. From day one after my surgery I was placed on HRT (hormone replacement therapy).
The best advice I could give you is to say that this is a personal decison, the best thing you can do is take all the facts you have, and weigh your pros and cons. For me it was a very wise decision. My pain is gone I have no ill effects from the surgery.
I have read some pretty harsh words against a hysterectomy on this website, even to the point of calling it "castration". I don't agree with this but nonetheless everyone has their own opinoins and has to make their decisions.
Just because a surgery is deemed not right for someone does not make it a bad thing, for many women it is necessary, proven helpful, and gives them a better quality of life.
The best thing you can do is read alot about it, but more importantly talk with your doctor and think about getting at least one more opinion.
But despite the horror stories some women may tell you, there are success stories, quite a few of them actually. Take care....

Lori
__________________
L.


DDD, Spinal Stenosis, Fibromyalgia,
ALIF surgery on December 10, 2007, numerous Injections, SCS December 2010.

 
Old 02-27-2008, 09:30 PM   #4
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Re: Hysterectomy or Not? New & need help!!!

Hi jupiter, sorry to hear of your troubles. I was pretty much in the same boat 2 years ago (except for the painful sex part, for some reason) but I chose to have a uterine arterial embolization.

I've posted on other threads about it because it's a very good alternative to hysterectomy. It cured most of my symptoms (no more anemia, no more funny looking gut, or constant pressure on my bladder, killer periods...) the only thing that isn't 100% back to normal is that my periods are still heavier than I remember them, but not nearly as bad as they were.

Anyway, the procedure leaves you with all your parts, is usually done on an outpatient basis and when you compare the recovery time from the UAE to the recovery time from an abdominal hysterectomy (usually required when large fibroids are the problem), it's definitely got the advantage there.

(But even if you decide to have the hysto, fight for your ovaries for sure!)

 
Old 02-28-2008, 04:18 AM   #5
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Triple777 HB User
Re: Hysterectomy or Not? New & need help!!!

Quote:
Originally Posted by jupiter14 View Post
Could use some insight. Is this the right proceedure?
Hi Jupiter, I'm sorry to hear about all the pain and problems you're having. Hysterectomy is an abused surgery. It should be recommended as the last resort, not the first line of defense. The reason for it is doctors are accustomed to doing it and they get paid far more for cutting your organs out than for doing less invasive alternative surgeries. It sounds hard to believe, but it's true. It's a business driven by profit. If you had a tumor on your kidney, they would NOT think of removing your kidney (even though you could live without it), they would just remove the tumor and leave your body intact. There is a myth that female organs are throw away and not needed. Nothing is further from the truth. Fibroid tumors and ovarian cysts can be removed while leaving your organs intact. They've known how to do this for over 100 years. A lot of women think that vaginal hysterectomies are something new, but they've been doing vaginal hysterectomies for over 100 years too. Medical studies show that there is a much higher complication rate for vaginal hysterectomy. The risk of damage to other organs and your vagina is quite significant compared to the abdominal cut.

Medical studies show that when the uterus is removed, women have a three-times greater incidence of heart disease. When the ovaries are removed, women have a seven-times greater incidence of heart disease. Sexually speaking, if you experience uterine contractions with orgasm, you obviously will not after your uterus is removed.

Myomectomy is surgery that removes fibroid tumors. It is the best way to remove fibroids if it is necessary. Doctors don't tell you about it because it is more time consuming and the insurance companies pay far less for it. Plus, many surgeons are not skilled at just removing the fibroids, so you have to do some searching to find one.

If you can hold out until you reach menopause, that is the best choice, but if not, having the fibroids removed by myomectomy would be far the best option for your overall health and sexuality. Good luck to you.

 
Old 02-28-2008, 11:26 AM   #6
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Join Date: Oct 2007
Location: Minnesota
Posts: 61
Elaine444 HB User
Re: Hysterectomy or Not? New & need help!!!

Quote:
Originally Posted by jupiter14 View Post
Went to a new Gyno and he has done hysterectomies on 4 women I know (with good results.)

I am 51 in Peri, pap smear test was good.

My symptoms: Very painful sex, making it almost impossible, clotting heavy periods,Large fibroid pressing next to my bladder making me pee all the time, and waking up in middle of night every night to pee! Multiple fibroids, bloating, pain, and protruding abdomen.

My Pelvic ultrasound transabdominal results: Enlarged anteverted uterus measuring 15x10x6. Several fibroids largest measuring 21 x 20 x 19 in the fundus. Prominant endometrial thickness of 10mm noted. Right ovary measures 3.6 x 2.0 x 1.5 without any free fluid in cul de sac.

Uterus measures larger on current exam (last exam 1 yr ago)

DR says strongly advises removing ovaries and tubes as well.
He wants to dothe lapro proceedure (not a candidate for vaginal.)

Admittedly I have read quite a bit about this being an over abused surgery.
I feel so awful, I can live with the bleeding and clots, but this peeing thing and the not sleeping cause I have to pee (yes I stop all fluids at 3:00PM), and the no sex is killing me, and my husband.

Could use some insight. Is this the right proceedure?
I will not give up ovaries with out a fight!
The mention of right ovary size, is that bad and why?
Mother has horrible osteo and I am frightened about losing ovaries.
I could really use some help here!

Thanks

My situation is a bit different than yours as I had my total hysterectomy and bilateral oopherectomy 2 1/2 years ago at age 33 for endometriosis. I did not have fibroids. But some things in your post stand out for me that concern me. The first is that your doctor strongly advises you to have ovaries removed also. What is his reasoning for this? The ovaries continue to function and produce our natural hormones, especially estradial and testosterone, long after menopause. They are important for our health and wellbeing, and help to protect against heart disease and osteoporosis among other things. Hormone replacement can not replicate what our ovaries do for us so naturally and efficiently.
I now suffer with severe osteoporosis of the spine and osteopenia of the hip and this is despite using hrt and doing weight bearing exercise, taking calcium and vitamin D, and eating a healthy diet. The drugs to treat osteoporosis can have wicked side effects and cause serious long term negative effects so can not be taken lightly. Building bone back in surgical menopause is extremely difficult. One would almost require testosterone replacement for protection and any chance of reversing osteoporosis, and testosterone replacement is one of the hardest hormones to get a doctor to prescribe. Only synthetic testosterone such as that in Estratest (which also has synthetic estrogen in it) is available at regular pharmacies (even though technically even Estratest is not FDA approved) and it may or may not work for a woman. I had severe side effects with it. You can get natural compounded testosterone from a compounding pharmacy that is more natural to what a woman's ovaries make but you have to find a doctor knowledgeable and willing to prescribe it first and most compounded hormones are not FDA approved (although the ingredients are) or owned by any drug companies and therefore insurance companies will not pay for them.
I could go on and on about the nightmare that surgical menopause for me has been even with hrt, but I will say that I would think you'd have to have something as serious as ovarian cancer to benefit from removal of ovaries with all of the studies out there about their importance (I would post them here but do not want to get in trouble for posting links). If your doctor is pushing to have your ovaries removed, IMO he is not showing concern for your total wellbeing or respecting your wishes. I would run from him and seek multiple opinions elsewhere. A lot of doctors are still old school and automatically recommend a woman have her ovaries removed at the time of hysterectomy if she is over 45. To me this practice simply does not hold it's weight anymore.

For me sex has been impossible since my hysterectomy. I had pain before it but now my vagina feels shortened and I have a loss of sensation down there. I can't even wear vaginal rings (for hormone replacement issues) without severe pain. As far as urinating, I never had a problem with it before but since my hysterectomy I have suffered with urge incontinence (and I am thin, young, never had kids so no other reason) and if my hormone replacement is not adjusted just right I have to go to the bathroom a LOT. I now have pelvic floor dysfunction that I am seeing a physical therapist for, and have had to have more surgery due to adhesions and scarring from my hysterectomy. And don't get me started about sleep. One of the lovely effects of surgical menopause and lack of ovarian hormones is insomnia. Geesh, I wish with everything that ALL I had to deal with was endometriosis (and believe me I had SERIOUS pain with that too) and that I had kept all my parts. I am on more pain meds, have had more proceedures and surgeries, and am seeing more teams of doctors than I did before.
I share all this because too often I see women convinced that all of their problems will go away with a hysterectomy and that life will be happy ever after. But that is often not the case (people tell me it's rare to have all the problems I have but I beg to differ; I was very healthy before aside from the endometriosis). It IS still major surgery and not without serious risks and possible consequences, and doctors/researchers etc. have a reason for showing concern about overuse of hysterectomy.
There are always alternatives to try first. I have heard of women who used progesterone for a time to shrink their fibroids and then go on to have a myomectomy with an excellent outcome. I know a whole forum full of women (near menopause) who simply did nothing to treat their fibroids and eventually they shrunk on their own and the women have entered natural menopause with no more problems with fibroids. Looks like a few others here have made excellent alternative suggestions as well.

I wish you the best with your future health and hope that you find a solution that works for you and takes into account your whole self!

 
Old 02-28-2008, 06:00 PM   #7
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jupiter14 HB User
Re: Hysterectomy or Not? New & need help!!!

I really appreciate these thoughtful responses. And if anyone else wishes to weigh in I would appreciate it.

I now need to research UAE.
I am real confused though about the enlarged uterus, size of grapefruit. Dr said suspected a condition similar to endomitriosis,which would be resolved by the surgery.

2 questions

Enlarged utererus will the UAE proceedure resolve it?

If I chose to do the hysterectomy and keep ovaries (only way I would consider it) By doing it with lapro proceedure with harmonic knife,
Is down time really just 1 week? I have a desk job but I am vital to the firm.

Ladies, my heart felt thanks.

 
Old 02-28-2008, 06:47 PM   #8
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Elaine444 HB User
Re: Hysterectomy or Not? New & need help!!!

Quote:
Originally Posted by jupiter14 View Post
I really appreciate these thoughtful responses. And if anyone else wishes to weigh in I would appreciate it.

I now need to research UAE.
I am real confused though about the enlarged uterus, size of grapefruit. Dr said suspected a condition similar to endomitriosis,which would be resolved by the surgery.

2 questions

Enlarged utererus will the UAE proceedure resolve it?

If I chose to do the hysterectomy and keep ovaries (only way I would consider it) By doing it with lapro proceedure with harmonic knife,
Is down time really just 1 week? I have a desk job but I am vital to the firm.

Ladies, my heart felt thanks.
If you are talking about adenomyosis (endometriosis deep in the uterine wall) than no, a UAE will not resolve it, nor will an ablation. Most doctors generally agree that only a hysterectomy will resolve this problem. However, if you do an internet search typing in "adenomyosis alternatives to hysterectomy" there are several doctors that do surgical techniques to remove the adenomyosis and reconstruct the uterus so that it can be preserved. Unfortunately they are few and far apart. There are hormonal agents that can be used temporarily to provide relief while you decide what to do next . It would give you more time to research and arrange things at work, as well as interview different doctors to find one you are comfortable with treating you.

As far as laparoscopic hysterectomy, it depends on how it is done. I had an LAVH (laparoscopic assisted vaginal hysterectomy), in which my uterus was removed vaginally, and recovery time was four weeks for me (which was not long enough). I have heard that with a strictly laparoscopic hysterectomy that does not involve removing the uterus through the vagina (although the top of the vagina is still sewn into a vaginal cuff to prevent prolapse once the cervix is removed therefore there is still scarring that needs to heal) the recovery time is more like two weeks. But to me this seems ridiculous, because no matter how advanced a surgical technique a doctor uses, organs are still removed, ligaments and arteries severed, and things are moved around in there and you still have internal stitches involved with the vaginal cuff unless you kept your cervix (which may not be an option with adenomyosis or fibroids since the cervix is actually part of the uterus and therefore there would still be a risk of disease developing there or being left behind). I have had two laparoscopies in addition to the hysterectomy that did not involve removal of any organs (just removing scar tissue and diagnosing endometriosis) and it still took me a week to be able to return to work. At a bare minimum with a desk job I would allow two weeks. One week is not even enough time for the anesthesia to clear your system. I say this not as a medical expert but a concerned person with personal experience with surgery. You do NOT want to risk complications. Work is never more important than your personal health.

Wouldn't it be nice if you reached menopause soon and didn't have to deal with any of this at all! I will say a prayer for you!
Elaine

Last edited by Elaine444; 02-28-2008 at 06:48 PM. Reason: spelling

 
Old 02-28-2008, 07:14 PM   #9
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jules3 HB User
Re: Hysterectomy or Not? New & need help!!!

jupiter, i agree that you need to research all options..im still not sure about enlarged bulky uterus..is it all fibroids ? or is it a large size organ? i will speak to my doc tomorrow..i am deciding about hysterecyomy too..it is a major surgery that will require 4-6 weeks out of work that includes a desk job. People on the boards are very helpful and you will get all kinds of responses..But the bottom line is it is your decision because it is your quality of life that we are talking about..nobody knows exactly how you are feeling...my question is since you are 51 shoudnt your periods be stopping soon..because of menopause..the uterine fibroids will shrink some than?

 
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