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  #1  
Unread 04-29-2002, 08:09 AM
Re: Afraid

Hi - I posted on the Prayer Request message board and someone said to come here and post.

I have been putting off hysterectomony for some time. Mainly because I have heard of so many horrible things that could happen after hysterectomy and told that I am just going to be exchanging bad symptoms before hysterectomy for bad symptoms after. I've been told that unless my surgery is life threatening that I shouldn't even consider it because the doctors don't tell you everything about hysterectomy and they are only doing it for money without concern about a woman and how she feels afterwards. So I decided to keep my uterus although I have a very large uterus which presses on my other organs, makes me uncomfortable and I bleed very heavily and am anemic as a result.

I had a pelvic/renal sonogram in January ad it showed that some fluid was backed up in one of my ureters and then I had a blood test and they said it was okay.

But in the last month I have another symptom which I feel like I can't live with!! I feel like I have to urinate all the time. I went to my gyn and and I dont have a UTI. Then he sent me to a urologist who examined me and explained how my uterus is so big that it is pressing upon my bladder and causing my discomfort. He gave me a medication to relieve the discomfort and it doesn't really seem to work.

I feel like I am going to jump out of my skin because of the way that I feel. He suggested I reconsider hysterectomy and told me about the dangers of kidney damage and how eventually they can be life threatening! He ordered further tests - an IVP which I have to schedule today. He said that they need to check to see if I have any kidney damage. I have also been leaking urine for awhile now. The way he described my uterus pressing onto my bladder and resting right on the pelvic area is exactly how it feels.

I am afraid that I will need a hysterectomy soon and I know that if I had to feel the way that I feel physically right now for the rest of my life that it would drive me crazy. But I'm so afraid of my sex life changing - I've heard horror stories. I'm also afraid of vocal changes because I am a singer - not just in the choir but a soloist and I perform in local theater and other various functions.

The gyn said that he wouldn't take out my ovaries but I've read that if you have a hysterectomy without your ovaries removed that they will stop functioning within 5 years anyway. From the way all the docs have expressed dismay and shock at the size of my uterus I get the feeling that my ovaries have to be affected in some way and when I have the hysterectomy that they'll end up taking out my ovaries or at least one ovary. (another fear)

I've had two myomectomies for fibroid removal already. The fact that they grew back and have made my uterus so big now and the fact that I'm 42 years old - it doesn't make sense to me to have another myomectomy. Also the last doctor said my uterus was so patched up because I had so many fibroids that I probably couldn't have another myo.

So I feel like hysterectomy is in the close future but it depresses me so. I'm so afraid of the sex difference and the voice difference. I just keep crying because I think this is what I need to do. A friend suggested that I talk to someone - someone who knows about this stuff. So here I am.

Thanks for listening!

Didi
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  #2  
Unread 04-29-2002, 08:20 AM
Re: Afraid

You poor thing. I can tell you from my expreience...I am so glad I had a hysterectomy. I have an excellent doctor - One of the best in the country
My life after surgery has been wonderful. I wish I would have done it sooner. No pain, no bleeding, no discomfort, better sex, etc.
It sounds like your problems are getting worse. That is no way to live (constant pain, bleeding, discomfort). Find a doctor you feel confident with and reconsider the surgery.
Let me know what you decide and how you are doing!
  #3  
Unread 04-29-2002, 08:21 AM
Re: Afraid

Didi,

If it's prayers you want, you got 'em! This surgery is a very difficult decision. Some folks still think of a hysterectomy as 'elective surgery.' I guess that is correct if you consider whether or not you 'elect' to live a life full of pain, discomfort, bleeding, enlarged uterus, and whatever other symptoms may lead us to this surgery.

Please read, read, read the messages posted here. Every one of your concerns has been discussed. I am still waiting for my surgery, but have found much comfort in postings from women who are back, feeling better than ever and enjoying life once again.

I think our sex life is a concern most of us have and it is brought up often in the message boards. The general consensus is that after recovery, most women feel so much better than many actually enjoy sex even more than before, if that's possible.

I'm not a singer, but I saw a post very recently where other singers responded. As I recall, no one had adverse affects to their vocal abilities.

Our prayers are with you and feel free to post specific questions and you'll get answers. I found a lot of good information on the post-op boards as well.

Nancy
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  #4  
Unread 04-29-2002, 09:13 AM
Hi Didi

Welcome to Hystersisters.

I have had many of the same symptoms you describe. Excessive bleeding and anemia caused by fibroids, my uterus is the size of a 20 week pregnancy, and presses continually on my bladder. I'm up 4 to 5 times a night having to go to the bathroom.

My surgery is scheduled for May 23, so I can't yet tell you my experience. But I can tell you that all of the ladies that I have talked to at work that had the surgery say it's the best thing that every happened to them and they wish they had done it years earlier.

My opinion would be to talk with your doctor about your concerns and read the posts here. These ladies have been in your shoes, and can tell you how having the surgery has changed their lives.

I will be praying for you. Best wishes, and lots of s.

Lisa
  #5  
Unread 04-29-2002, 12:11 PM
Re: Afraid

I had my tah/bso last tuesday... so this post will be short.. one of the things I thought of when I first got home was how foolish I was to be so afraid.... its normal mind you but really I am telling you..... do your homework... ask questions of your surgeon, read this site and have faith.... get in the best shape you can physcially and mentally and you will be fine.... I am 80 lbs overweight and that was my worry.... but I can tell you... I am doing very well.... tired, sore, but I know I will make it through this and have my strong body back.. I already do feel better.. I had a very large endo mass, adendo in my uterus and fibroids... bleeding and daily pain before this... and the pain after the tah/bso is a healing pain so its ok...
gotta get back to bed......
have faith .... let go and let God.....
kara
  #6  
Unread 04-29-2002, 12:33 PM
SO GLAD!

I had my TAH for fibroids and absolutely horrid bleeding. I always had very heavy periods but never any pain and hardly even cramps and so I actually felt lucky LOL. Well, last year I started having really bad bleeding and it landed me in the ER the second month it happened. I was VERY anemic, it turned out, and I never even knew it. Now looking back, I know that my constant craving for ice was a sign and the fact that I was short of breath coming up the stairs. But other than that, I kept on doing what I always do, keeping busy with my kids, etc. We women tolerate SO much! I'll never forget the ER doctor who looked at me and said, "Do you realize that hematologically speaking, you are half the person you should be? You do not have to live like this." Boy, did that make me sit up and realize that this type of bleeding was not right. So, after a few months of building up my iron and taking Lupron to shrink the fibroids (worked very well), I had my TAH and I can not tell you how glad I am that I had this done. Oh, ladies, it's so freeing! I know many of us know this feeling, but when I think of all the years of heavy, heavy periods which ruled my life (and which I actually accepted as being ok!), I am SO happy that it's all over. Best thing of all is NO MORE BLEEDING!! NO MORE PERIODS!! It will be a year this summer for me and I still can't get over how GREAT it is to walk right by that feminine hygeine aisle LOL! I kept my ovaries because they were healthy and fine and at the time of my TAH I had just turned 40. My doctor said I should go into menopause normally - and it may be another 10 years before that even happens. So I just wanted to say that I know how you feel - I was very scared and ANGRY, too, - yes, angry - that after two C-sections, I had to undergo this type of surgery again. But I am SO SO glad I had it done! Oh, and this site is a Godsend - I helped me immensely and still does. You ladies are all the best!
  #7  
Unread 04-29-2002, 02:19 PM
Having a hard time, too!

Didi,

I too am having a hard time with making this decision. I have had such bad pain within the last few days that it is becoming easier to make it in favor of having the hyst. I can't help but feel worried about the post-op side effects. Whenever I think about the horror of hormones for the next year I cry. (I am being put on Lupron for 3 mos post-op before I can start HST.)

I have been reading, reading, and reading. My doctor supports my need to be informed and has answered all of my questions about my treatment and concerns. I can only say, Ask!!!

In my reading I have learned that vocal changes come about under the influence of androgens in your hormone replacement therapy. If you are worried about it, ask your dr. He can tell you about what HRT you can begin taking if the need arises.

Also, your ovaries will function or not function according to the way your body handles the hyst. You will need to pay attention to the symptoms you experience after the surgery. I was planning on keeping a journal post-op detailing my recovery, feelings, and symptoms.

Last, I have received a little comfort from the fact that the libido can be "jump started" with androgens in the HRT. Besides, my sex life is pretty bad, now, because of the pain, so I figure it can only get better. (My dr told me that the regimen for this kind of HRT is one month on and several months on another estrogen replacement.) Again, ASK! I have received a lot of comfort in asking!

You are not alone! This is a great place to be to find answers, support and friends that are in your shoes. It's also a great place to find prayers and love. These sisters are GREAT! Here are some cyber- s. I hope they help!
  #8  
Unread 04-29-2002, 02:33 PM
Re: Afraid

Hi Didi and welcome to Hyster Sisters!

I'm glad you posted here.

I have to say that I would recommend you seeing another doctor. I know that's probably not something you are looking forward to doing, but, another opinion is usually a good idea when you are considering a major operation.

I can relate to the full bladder all the time. I didn't have enough room in my body for anything as my uterus was taking up so much room! I am at the 9 week post-op mark and I can tell you that this is tons better. Sometimes I don't have the urge to go and I try anyway...well, the river comes out! Pardon my crudeness, but it's a big relief after having to go every 5 mins.!

How old was your mom when she started seeing the signs of menopause? It's important to know this as 3-6 years before the onset of her starting menopause is about the time you will see the symptoms. My first doctor thought I was in peri-menopause, I was 36 at the time. No, I wasn't in peri-menopause, my mom was 55 when she started menopause, she misdiagnosed me. So, ask your mom, if you can how old she was. That's a good gauge of when you will start.

I have only noticed no PAIN or BLEEDING when I have sex now. And I don't sing anywhere but in the shower and it didn't change with me. Why or how would it change?

Please read the pull-down menus on the main page as they contain tons of good information that will help you ask your doctor questions and answer some of yours as well! www.hystersisters.com

Sara
  #9  
Unread 04-29-2002, 04:16 PM
Re: Afraid

I am so sorry for what you are going through! My uterus was enlarged also, due to suspected adenomyosis...my decision was made because I could not live with the pain anymore...I figured that my sex life was suffering so much from the pain and bleeding and it interferred with my life, this had to be better! So far, I have to say...IT IS BETTER! I had my LAVH/BSO on April 16th (two weeks post op tomorrow) and I was put on Estrace right away...emotionally I feel 100% better than I have in years...I do not have any menopausal symptoms what so ever, and I know what they are...I experienced them with Lupron! I don't know much about keeping your ovaries as my doc and I decided that was the best decision for me, but I have read many many post here that do fine when keeping their ovaries. This is a big big decision and only YOU can make it. But from my experience (I know only 2 weeks)...I made the best decision for me! You will be in my thoughts and prayers! Keep posting!
  #10  
Unread 04-29-2002, 05:44 PM
Re: Afraid

This is a decision that only you can make. We can share our experiences, but everyone recovers differently. A positive attitude towards your surgery and recovery can make a very big difference. If you're not sure get a second, or third or fourth opinion. Check out the hysterectomy alternatives board on this site.

HysterSisters is neither pro hyst nor anti hyst. It functions as a support group for ladies who are having, have had, or are contemplating a hyst. There are sites out there that are very much anti hyst and they only tell the bad experiences that some ladies have. Check out the post op board, there are good and bad results, but the good seem to outweigh the bad.
  Quote:
I've been told that unless my surgery is life threatening that I shouldn't even consider it because the doctors don't tell you everything about hysterectomy and they are only doing it for money without concern about a woman and how she feels afterwards.
This sounds like it is directly from one of those sites. Are these people concerned with how you feel right now? Or are they only concerned with pushing their own agenda? If you think your DR is only in it for the money you need to switch to another DR.

I had fibroids and a very enlarged uterus. I couldn't go past a rest room without having to empty my bladder. I also had bouts of severe, continuous bleeding. I was on provera for 3 years to control it, and that worked until last fall. Then nothing would stop the bleeding. By that time my fibroids had grown so large that a vaginal hyst was no longer an option for me. I was constantly tired, cranky, extremely anemic, bending over to tie my shoes was difficult.

I am 12 weeks post op now and I feel wonderful. I had the usual recovery "troubles" like constipation and needing to sleep for a couple of weeks. That is behind me now. I have been on Estrace 1mg/day for the past 10 weeks and I haven't had any hot flashes or the extreme mood swings I had with PMS. I have energy again, and I don't have to take a nap in the evening before I go to bed. I am not a singer but I haven't noticed any change in my voice.

Again, Didi, only you can make this decision. You need to make sure it is the right decision for you and if you decide it is what you are going to do you have to try to get a positive attitude about it.

Good luck.
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