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*THIS* close to backing out!  Help! *THIS* close to backing out! Help!

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  #1  
Unread 10-17-2011, 05:53 PM
*THIS* close to backing out! Help!

Hi there! Okay, so I'm scheduled to have a partial hysterectomy in 1 month (I don't know all of the abbreviated thingys here I do know that I will be cut horizontally along the bikini line, my uterus and large fibroid tumor will be removed, leaving my ovaries and cervix intact.) I'm freakin' petrified! Not only of just not surviving the surgery in general, but the aftermath. I've been doing some looking around online and even here, reading a LOT here about hormone problems after surgery (even though I am keeping my ovaries.) I do NOT want this surgery. My dr. discovered my large fibroid back in 1999 and I have had no problems with it until the last couple of years, when I started having sciatic problems (other than that and some pelvic "heaviness" around my period, no other problems, not even heavy bleeding or irregular periods!) My fibroid is now supposedly as large as a small grapefruit (14 weeks gestation.) I started having hormone fluctuations a few months back and have recently started having major problems with hot flashes and losing my hair. All hormone testing seems "normal" with the exception of my Estradiol levels indicating perimenopause. So I cannot do any HRT without it "feeding" the fibroid. Dr. is saying that partial hysterectomy is the way to go (I do trust him to not push me into anything as he has left the "ball in my court" since the discovery of the fibroid.) I have a couple of days a month when I feel really good (today is one of them), but most days I have trouble with hot flashes, sciatic pain, pooched out belly, etc. but at least I'M ALIVE and relatively normal. Now I am worried that a) I might not survive the surgery and b) if I do, I'll be some sort of fat, irritable, depressed, balding freak who never wants sex again and who won't be able to work out (exercise is a BIG part of my life) with a huge belly due to what I've read here referred to as "swelly belly." Geez!! What am I getting myself into? How do I calm down? Should I just not have the surgery at all? I realize that waiting in hopes that my fibroid will shrink with menopause can cause other problems and might lead to even more involved surgery in the future...and it still won't help the current hormone problems I'm having now...but I'm going to have MAJOR hormone problems after having the surgery (according to stuff I've read here and other places?) I'm petrified and getting too wordy and obnoxious, so I'll stop for now. Totally freaking out and near tears. Thanks to anybody who has read this annoying post. Sorry for being so negative.
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  #2  
Unread 10-17-2011, 06:37 PM
Re: *THIS* close to backing out! Help!

I can understand how you feel. For me, it's a little easier because menopause doesn't seem to be in sight and I spend a lot of time bleeding and feeling awful. Lots of various pains that may be coming from the fibroids.

I think a lot of us have the same thoughts as you. I know I'm really scared and think of all the things that can go wrong. While a hyst isn't going to stop your menopause if you still have your ovaries it will probably progress as it would have if you didn't have fibroids. so that's sort of a wash. It will probably make a lot of your other problems feel better.

It seems that people who get swelly belly don't have it last more than a few months and many people seem to have it for a shorter period. You've got a grapefruit in there now, how much worse can a poochy belly be?

Take a deep breath. Keep reading. I know sometimes there is scary stuff but other times there are great stories.

After a hyst they can probably give you HRT which would probably help with the menopause symptoms.
  #3  
Unread 10-17-2011, 06:56 PM
Re: *THIS* close to backing out! Help!

I am sorry to hear how scared you are. Only you can determine if you want to take this course of action, get a second opinion, or wait and see if things get worse.

When I went in, I cried all the way to the hospital because I was afraid I would die. The alternative for me was unbearably heavy bleeding and pain each month from a fibroid which was the reason I made the choice I did. I kept telling myself this would lead to a better life for me.

I am now just over two weeks post surgery and feel great - no swelly belly, no early menopause (I kept my ovaries and I haven't had an problems), no emotional seesaw and just a few constipation issues (probably TMI). Remember, each of us will have different post-surgery outcomes and its impossible to guess how it will will turn out until its done. I just want to emphasize that it doesn't always turn out bad.

Remember that even if there are scary stories out there, there many people who have had this surgery are out there enjoying their lives.

You'll make the best decision for you. In the meantime, I wish you the best in your decision and remember there is a great support system here.
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  #4  
Unread 10-17-2011, 07:06 PM
Re: *THIS* close to backing out! Help!

Have FAITH. I am scared crazy since they found a ufo (unidentified floating object) during my pre-op biopsy. But I have to sit myself down and fill myself back up with FAITH. The chances of you making it thru the surgery are wonderful, but the chance of you living a full healthy life without the surgery are much smaller. Odds are, it's going to have to be done at some point in your life and the older you are, the harder healing is. May as well knock it out while you are strong and healthy! I am sorry for your fears and hope you the absolute best.
  #5  
Unread 10-17-2011, 07:12 PM
Re: *THIS* close to backing out! Help!

Thank you so much Whirlygig and Colleen! I need to hear positive things. There's so much anti-hysterectomy info out there online as well as some stuff here on this site that has not been real positive. I mean, I had never even heard of any of this "belly binder" stuff...do I need that? What will happen if I don't have one? Will my stomach muscles just never heal and leave me with a pooch for the rest of my life? I'm 46 and although I'm as regular as clockwork with my periods and they don't cause me too much trouble (no heavy bleeding, bad cramping for the first couple of days, relieved by Motrin), I'm experiencing these other hormonal issues (or at least they appear to be hormonal...thyroid tests and other bloodwork looks normal) so I was looking into HRT, but that's not an option with my very large fibroid. I know that a swelly belly doesn't sound much worse than a pooched out belly due to the fibroid...but I only really get pooched out/bloated right before my period. I work very hard on trying to keep my weight down and am freaked about gaining weight and not being able to work out. I know that all women are different and heal differently...I just need to find a way to calm down and hope that the positive stories I'm hearing are more the norm than the negative ones. I think I'm majorly stressing my husband out too. I'm trying to do some yoga to de-stress, but really don't know what else to do. Thanks so much ladies for your kind responses and so glad to hear that your surgery went well, Colleen...Whirlygig, have you had surgery yet? If not, I hope it goes well for you. Thanks again so much!
  #6  
Unread 10-17-2011, 07:14 PM
Re: *THIS* close to backing out! Help!

Thank you, Chryvine! What you say makes sense...I know that if I wait, the fibroid will more than likely grow even larger making for a more involved surgery and a more difficult recovery. I suppose it's the right thing to do...it's just hard waiting. I want it over with and to move on with my life. Thanks for the replyDS!
  #7  
Unread 10-17-2011, 07:43 PM
Re: *THIS* close to backing out! Help!

Raquel2B, I am 49 and had a TAH (removed uterus, cervix, tubes, kept ovaries - 4" bikini incision) 3 months ago. I completely understand your fear, terror, angst, etc! I didn't know I had a giant mass of fibroids until about 2 years ago. I needed another surgery first (gall bladder) and I just didn't want to get operated on again. With one thing and another, I was finally ready to face my fears this May, and had my surgery in July. I was so terrified, and you're correct, the horror stories and anti-hysterectomy information out there on the internet doesn't help.

So, my story and hopefully it will give you a little comfort. My periods were fairly regular, but heavy and full of clots, until about 6 months before my hyster. I started having terrible troubles with anemia, pain, and bowel problems. My cycles started getting closer together and much longer and I was getting weaker and more exhausted. I knew I was in peri-menopause, but the symptoms got worse fast. My gyn said the fibroids were still growing and multiplying (she said my uterus was like a fibroid universe) and that even with shrinking after menopause they would still cause symptoms because of their invasive size. It was really just time.

My surgery went well, and I'm healing well. It hasn't been a fun experience, I won't lie, but I do feel better now than I did before. I was in much less pain than I expected after surgery and truly the waiting was much harder than the surgery itself. I'm one of the women whose ovaries quit after surgery so I am on vivelle-dot and estrace cream to help with the symptoms. Honestly, that part makes me a little honkerblonked, but since I can actually treat the symptoms with HRT now, I'm doing better than I was before the surgery. All in all, I'm glad I did this.

With all that said, each of us has to do what is best for us personally. I really believe if we aren't ready to have the surgery, we won't heal well. I also think if you have any doubts or questions, getting a second opinion might help. I'm sending good thoughts your way and hope you find the answers you need to feel comfortable and safe with whatever decision you make. Good luck and remember to breathe when you can! Sorry this is so long - your post really struck a chord with me!
  #8  
Unread 10-17-2011, 07:45 PM
Re: *THIS* close to backing out! Help!

The first thing I would suggest is not to get info on this from the internet. All you do is freak yourself out. Also don't read the post op boards because it is where you will find more problems-that is why we post there for help. Any surgery can cause problems and there are risks. However, I was active before and am still active. You have to weigh the pros and cons. No one can decide for you. The odds are that the fibroid will probably cause you more problems but that may take time. I was scared about not making it through surgery but here I am!! Just keep telling yourself why you are having it and before you know it, it will be over. Also with keeping your ovaries you may not have as much of the hormonal problems. I am sure you will do fine.
  #9  
Unread 10-17-2011, 07:52 PM
Re: *THIS* close to backing out! Help!

Do you have the option of having just the fibroid removed? If you do, this might buy you enough time to get through menopause.

Although it's true that the post-op boards here can focus more on problems, I don't agree that it's best to avoid them. If you don't read them, and if you go through with the surgery and THEN have problems, you'll be posting over on the post-op board saying you had "no idea" that x, y, or z could happen to you. Better to be forewarned.

There is some good to be found on the Internet (after all, that's where you found Hyster Sisters) but there's plenty of bad information out there, too. Read the reputable sites and leave the conjecture to others!

But, even after reading the post-op boards, understand that most women really do very well after this surgery. Even the difficulties on the post-op boards rarely are about truly serious complications. I was one of the women who DID suffer a rather serious post-op complication in the form of a hematoma... but most complications are simply things that happen sometimes.

If you are truly regretting your decision to have this surgery, there's nothing keeping you from postponing it or just calling it off altogether for now. Unless your situation is an emergency, you have time to continue researching your options.
  #10  
Unread 10-17-2011, 08:36 PM
Re: *THIS* close to backing out! Help!

Omg I know exactly how you feel! I created the thread "The shock wore off ...." I was in the emergency room yesterday after being taken there by ambulance because I couldn't breathe, I was dizzy, lightheaded and thought I was going to pass out. I was hemorraging and was was sure I was losing too much blood. My tests were all normal. They summed it up as an anxiety attack from the anticipation of the operation. I called my dr. today and said "what if you're wrong - I have to live with the consequences" ... this is the state I am in. I feel too like this is the worst thing to have happened to me. I just pray for a miracle siince the surgery has not been scheduled as of yet. You are better than me ... I'm letting this destroy me and it hasn't even been scheduled!
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