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need support for my decision
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09-15-2001, 09:03 AM
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HysterSister
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Posts: 101
Hysterectomy: October 24th, 2001
Surgery Type: SAH
Ovaries: Kept 1 or both
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need support for my decision
Hi all,
I'm a newbie, both on this forum and to the whole world of hysterectomy. I'm about 80% convinced I need some sort of hyst, but haven't confirmed with my dr or set a date. I have a large fibroid & endo, confirmed by laparoscopy, 2nd opinion, & ongoing pain. My concern is that I'm "selling out" by going ahead with surgery. I've read several books on how to avoid hyst, how to keep my uterus, etc., but feel that FOR ME this may be the right choice. Anybody else felt this way before surgery?
I'm not even ready to think about what this may do to my up-to-now great sex life!
Also, what's this "castle" stuff? Is that another word for the dread hospital?? No offense, but that strikes me as rather bizarre--I associate castles with fun, like at Disneyland, not places of loss of control, drugs, and pain.
Thanks for any help.
On the fence,
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09-15-2001, 10:47 AM
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HysterSister
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Posts: 469
Hysterectomy: August 2nd, 2001
Surgery Type: TAH
Ovaries: Removed both
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Hi Redcat
Hi
I too had a hard time deciding. I had severe endo and large ovarion cysts. I was scared to lose my ovaries, tubes, uterus, and cervix. I am 43. There are the concerns of HRT. So much to think of. I totally sympathize with you. I also read books on alternatives to hysterectomy.
I had a lot of scar tissue and adhesions, mostly fron the endo. I finally decided after 2 more opinions, that I didn't want to risk what may happen if the endo, which was stage IV in my
case, got worse. It can cause a lot of problems. If you really feel it is the right thing do it. You should trust your instincts, they are probably right. Every case for a hysterectomy is unique and indivudual. As far as a sex life, I just yesterday resumed intercourse, after a six week waiting period. It was the same as before, and my ability to have an orgasm is as good as ever. I, too, wondered why they refer to the hospital as the castle. Sounds weird, and can only say it has to do with referring to those having surgery as princesses. Oh well. Anyway, I am gald I did it. I fell so much better. HRT for me was no problem. I am on the Climara patch, 0.5. No side effects. I hope this helps you. God bless you in your decision, and do keep us posted. This site truly is helpful in my opinion. You can get all sorts of answers to your pre-op and post-op questions. Take care!!
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09-15-2001, 11:04 AM
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Guest
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Posts: 807
Hysterectomy: October 1st, 2001
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need support for my decision
I have read several books about how to keep my uterus in the event of my physical problems. They were all very convincing and sounded like that was the way to go. After all who WANTS to undergo a major procedure?
But I also realized that some of these books, while authors thinking they were being helpful, came across all too biased. I can find jsut as many advocating hysterectomies. Different views from individuals around the country.
Unfortunately, the books I read are people who have time and energy, and apparently resources to deal with their constant all-consuming pain,....if indeed they have any pain at all.
I know these books are supposed to be helpful, but all they did was convince me that this wasn't the answer....and I wound up suffering for two yrs needlessly. I go in fo my hyster Oct 1st, with the resolve that is strong. I want my life back. I need to have the ability to look forward to planning things not around my periods and pain, but around my family like I should have the ability to do!
You may have read a different book than I, but the ones I have read are from a society that thinks by removing the uterus, you are removing the very thing that makes a woman~ a woman.
This is so untrue! We are women because we carry ourselves with grace in the face of adversity, we are women because of the way we think, and act and give and recieve. An organ in our body does not make us who we are. We denote who we want and need to be with our affiliations of friends, family and God.
And most importantly how we view ourselves. With confidence and respect.
Obviously, I have a problem with the books I have read. I see no reason to suffer needlessly, nor to delay the inevitable, nor do I see any reason God would want us to do so.
I wish you peace in your journey to know what is right for you. You have my support whatever you decide And you will find tons of others here who will offer the same.
As far as the castle is concerned, I found it a little wierd at first too! Still bugs me at times. But I believe the creators of this site are merely letting us know, that whatever we do, we are princesses and ladies in waiting becasue we deserve to be. We are all special people who have been through an awful lot in our search for less or no pain.
It is jsut that when one says hospital....it seems so drudgerous....so we make it seems like it is....a place where we go and have a real chance a getting our lives back to normal....and where we indeed should be treated as queens and princesses. After all , everyone deserves to be pampered now and again...after major surgery is a perfect time to be treated as royality!
I hope you find it within you to know whatever you decide is right for you, because you decided it. There is no "selling out" if you get your life back! What would you be selling? Pain? Scheduling your life around it? Having to put your life on hold cuz of it? This is something that you must feel decent about. And there is no reason you should not. Unless you have gotten a hold of the books I have that say it screws up our bodies and does damage to us as women. It does not. I am a researcher,and have researched this to the ground.....for some it is elective, for others , like me, it is the only hope of retrieving what I have lost.
God Bless you Dear. I hope I have not spoke to long and or too much.
Peanut
PS-As far as the sex is concerned, I'll take my chances cuz at this point, I can't have it without pain and bleeding at times anyway. I have heard from many drs that the sex life you had before is a direct corrospondance to the sex life you will have after. And I can't be in the mood fro it when I am like this most of the time. I am thinkig my drive will rise to what it once was! And I can't wait! woohoo!
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09-15-2001, 11:14 AM
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Guest
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WELCOME ABOARD!
Hi there Redcat,
You have a very big decision in front of you and you are very wise to search all your options. I did all kinds of research before my hyst. Although I didn't have a choice in the matter I still wanted to know everything about my condition and the surgery.
You and your doctor must make this decision together because it is not something you cannot undo in the future. There are so many factors to consider. Are you married? Do you have children? Do you have a longing to have children? Are you physically in danger? Are you miserable with the symptoms of the fibroids and endo? Basically, what are you willing to put up with and for how long? Many women have this surgery to improve their quality of life and they are thrilled once the recovery period is over and they get back to a normal pain-free life. Yet others are faced with dealing with the emense emotional baggage that comes along with this surgery especially if the ovaries are removed.
This is a big decision with irreversible consequences so I urge you to continue your search for all the information you can find to make an informed, intelligent choice with your doctor. This site is wonderful for all the practical info you will need. If you want more factual reference type material I would recommend WebMD. Both of these sites got me through my hyst.
As for the castle and princess thing. Well we use this to give our community a common unity besides the pain, grief and confusion that brings most of us here looking for answers. It somehow brings levity to a grey situation. I hope this aspect of the site doesn't turn you away from a community of loving, caring and compassionate women. You will find us more than willing to lend and ear or a shoulder.
Hugs & Prayers,
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09-15-2001, 11:39 AM
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HysterSister
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Posts: 101
Hysterectomy: October 24th, 2001
Surgery Type: SAH
Ovaries: Kept 1 or both
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needing support
Wow, you ladies are so great! First, thank you for the beautiful replies and insight to my beginning foray into this daunting crusade--to further the castle metaphor . I've actually "only" had this problem since late July of this year. I felt a sharp pain on my right side, which didn't just "go away" like I hoped it would. A subsequent ultrasound and laparoscopy surgery just last week revealed the fibroid pressing on the ovary, severe endo, and ovarian cysts. I'll be 50 next Friday, and always sort of felt or hoped that I would be somehow be spared the whole hyster debate/decision.
Maybe I read too much. I read the books on how to "cure" your fibroids, self-help for endo, and a lot on natural medicine, which I believe has its place. I got the impression from my reading that women who opt for hyster are either intimidated by the medical-industrial-complex, not very bright, or too lazy to seek other treatments. I allowed myself to be influenced into thinking that I'm not trying hard enough to avoid this. Especially since it's "only" been going on since July. But I'm also not stupid and could see that managing this condition, even if possible, would be a full-time job, and I already have one, plus a rich life.
I got a second opinion yesterday and was lucky to get that. In my area the top gyn's/surgeons are scheduling new pts in Jan! This wonderful, attractive, 49-year-old woman dr told me she herself had uterus & cervis removed but kept her ovaries, and there was no difference in her sex life. What an angel! I also have a persistent third opinion stabbing me in my right side all day. Even I could tell from the lap. pix that the yucky fibroid and whitish endo tissue are not something I want inside my body.
While I'm not looking forward to what lies ahead (no surg date yet), I'm so glad I found this site and all you wonderful women to help me along the way. I will keep you posted.
Feeling much better,
Pat (moving off the fence)
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09-15-2001, 01:04 PM
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Hyster Sister
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Posts: 827
Hysterectomy: June 29th, 2001
Surgery Type: TAH
Ovaries: Removed both
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need support for my decision
Intimidated into surgery? I think we are too bright, too well informed, and not about to be "intimidated" into surgery by the medical powers that be.
I'm sure you'll find tons of information here and elsewhere in order to make a well-informed decision. You'll also find much love and support here to make your castle visit as easy as possible.
Do keep us informed.
Eileen
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09-15-2001, 01:06 PM
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HysterSister
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Posts: 20,817
Hysterectomy: December 14th, 2000
Surgery Type: TVH
Ovaries: Kept 1 or both
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need support for my decision
Hi Redcat, Welcome to Hyster Sisters.
I too had to make a decision as to whether or not a hyst was the best option for ME. It took me two years after my fibroid was diagnosed. In my case, it wasn't as much a matter of keeping an organ (frankly, with all the grief my uterus was causing me, I wasn't too attached to it), it was more a matter of trying to avoid major surgery when I was nearing menopause (I turn 45 next week).
I too explored alternatives to major surgery. In the end, a hyst was the best indication and, by the time I headed to the OR, I was satisfied with my decision.
Whenever we explore alternatives, we have to make sure that we explored all sides of the question. Often, people tend to be biased towards one option or the other and to not present all of the facts. Thankfully, there are ways of sorting through the issues in order to help us weigh the pros in cons.
You might want to check into the Hysterectomy Options and Alternatives message board, where you'll find others who are continuing with their search.
Wishing you the best of luck in your quest for answers. We'll be right here with you, every step of the way.
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09-15-2001, 01:11 PM
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Information Keeper
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Posts: 22,612
Hysterectomy: May 25th, 1999
Surgery Type: TAH
Ovaries: Removed both
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need support for my decision
Welcome, Redcat! I'm assuming that since you didn't quite understand the references to the castle, you haven't read the Bedtime Stories that Kathy has written. Go to www.hystersisters.com and scroll down to the Bedtime Stories for Hyster Sisters. Be sure to read the Author's Welcome. After you have read why Kathy wrote the stories, read them. I guarantee you will enjoy every one of them, and you'll more than likely read them often.
Best wishes,
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