Very Large Uterus, Very Scared (UPDATED) | HysterSisters
HysterSisters Hysterectomy Support and Information
Advertising Info HysterSisters Hysterectomy Support Tutorial

Go Back   Hysterectomy HysterSisters > Hysterectomy Support Posts > Preparing for Hysterectomy (pre hysterectomy)


HysterSisters.com is a massive online community with over 475,000 members and over 5 million posts.

Our community is filled with women who have been through the Hysterectomy experience providing both advice and support from our active members and moderators.

HysterSisters.com is located at 111 Peter St, Toronto, Canada, M5V2H1 and is part of the VerticalScope network of websites.

With free registration, you can ask and answer questions in our HYSTERECTOMY forum community, get our FREE BOOKLET, access Hysterectomy Checkpoints and more.

You are not alone. The HysterSisters are here for you. Join us today!
join HysterSisters for hysterectomy resources and support
Reply

Very Large Uterus, Very Scared (UPDATED) Very Large Uterus, Very Scared (UPDATED)

Thread Tools
  #1  
Unread 09-16-2011, 11:43 AM
Very Large Uterus, Very Scared (UPDATED)

I am new here (Although I have visited site for 3-4 years when trying to decide what to do and would love any help or encouragement. I have known I have fibroids for many years, but they did not cause excessive symtoms until about 3 years ago. Since that time I have tremendous bleeding, clotting, pain (at least 10 days a month) and pressure all of the time. When hysterectomy was first mentioned to me, I had just taken custody of my mentally ill sister's newborn, so I did not think it was the right time. Next, my college-aged daughter came home after Freshman year - pregnant. So, I promised all concerned family members that I would finally have the surgery after the baby was born. The first three months we were all exhausted and just when I scheduled for hysterectomy, my beloved grandson died in the care of a neighborhood babysitter. I spent the past year grieving and taking care of my heartbroken daughter. The point of all of this is: in all of this stress and time, my uterus has grown to the size of a twenty four week pregnancy, I am anemic, and one of ny ureters is being blocked from the pressure. My insurance ends in November and I am afraid it will be pre-existing if we get private insurance (husband laid off) . I am terrified of the surgery as my second opinion told me because it is so big, it is now more risky (blood loss) and will have to be a vertical cut, abdominal surgery . I was the last person he should have said that to because I am already so scared. I know the loss of my angel has caused me to have even more anxiety about my mortality, but I was scared before too. Is there anyone who had an extra large fibroid uterus that can relate? I have to get a grip, but I just start crying whenever my husband, parents, children start to pressure me to set the date. Please help me...........
Sponsored Links
Advertisement
 
  #2  
Unread 09-16-2011, 12:04 PM
Re: Very Large Uterus, Very Scared

I wish I could help. My uterus is the size of an 18-20 week pregnancy. I've been told I need a vertical incision too. I'm short and my uterus is pressing on my diaphragm so it'll probably even have to go north of my belly button. I'm still in a bit of denial while I'm gathering facts and opinions.
Have you asked about taking lupron to shrink it before surgery? That might cut into your insurance time, but I'd still ask the question since you're so hesitant.
Good luck!
  #3  
Unread 09-16-2011, 12:11 PM
Re: Very Large Uterus, Very Scared

Aw, sweetie!

Man, I feel for you. We can't help but feel scared and overwhelmed with news like this--for me, it was a mixture of anger at my body for betraying me, and anger at myself for "letting" the things get so big. (My ultrasound revealed that my uterine area was just a big mass the size of a 25 week pregnancy: the MRI was much more detailed, and it showed a footlong fibroid attached by a stalk to the outside of the uterus. The surgeon got a preliminary weight of 2800 grams of just fibroid--6.2 pounds!)

How could I not have noticed? Why wasn't I more on top of things? Around and around in angry, baffled circles. Our bodies just do things: it's weird, but we can't change it.

It's time. And you know it's time. And you're doing exactly the right thing to get this thing dealt with.

The hardest thing for me at the point you're standing in front of was to have trust: no matter how routine it all is to the doctors (for whom this really is a daily, **-hum reality), it IS a scary procedure when it happens to US. But here's the thing: medicine these days has come up with some truly amazing resources to meet the challenges of gynecologic surgery. I had an absolute ton of blood loss during my surgery--but my surgeon was never ruffled by it, because she expected it and had a Cell Saver on hand. It just caught my blood, cleaned it, and stuck it right back in the game. If need be, she had donated blood handy: I've been a donor myself in the past, but there wasn't time for me to donate my own before surgery, so it would have just been someone else's turn to do me the favor.

I have a vertical abdominal incision right now: yeah, it hurts, but that's what the Delicious Pain Pills are for, and I've found I don't need them all. The pain on this end is SO much more manageable, because your mind and body understand that this, unlike the presurgery misery, is connected to getting well.

I wrote down all my symptoms the night before surgery, because I was freaking out and needed to remind myself why I was doing this. My friend, I needed the bathroom 15 times in 6 hours, because my giant fibroid squashed everything and my bladder had no room. Every day felt like I'd just gotten back from a rough gyno exam--constant pain and pressure. I was a thousand times blessed because the fibroid was on the outside of my uterus, so no crazy period symptoms--but even without that, I could not imagine going on without my condition treated.

You deserve a comfort that you don't have yet. It's within your reach to get there, but you have to do this first. You CAN do this first, and it will be worth it. I wish you courage and strength and the support of those around you--it WILL be so much better on the other side!
Sponsored Links
Advertisement
 
  #4  
Unread 09-16-2011, 12:16 PM
Re: Very Large Uterus, Very Scared

Oh my goodness. I have no words that could possibly ease the pain of your loss beyond I am sorry for all that you are still going through. Making decisions in times of duress is always difficult, but you have so much more you have had to cope with than the average person.
I won't pretend to have an answer but I can tell you what I told my son, who is upset that he will be leaving the same day I'm having surgery: There is no "good" time. There will always be another issue to have to deal with, always something else to take the place of our focus on our own health.
I can tell you I have had 5 surgeries in the past two years, but this is the first time I have filled out an Advanced Directive, because I, too, am scared and wanted to have some measure of control, just in case.
The "stem to stern" incision is risky, but any surgery carries risks. What you have to ask is, what do you stand to benefit? Will the benefits outweigh the risks? Are you better off to your family now, or would surgery (and eventual recovery) be better for everyone in the long run?
I have spoken to a number of hystersisters on my journey toward surgery, and every. single. one has told me that it was the best decision they ever made. Yes, there is a long recovery period and I will have to relinquish control to others, I will not be able to be super woman for a while, but in the end, the pain will be gone and I will be able to function again. I am having LAH with possible BSO on Monday (a UFE was too effective, my big fibroid died and is now killing my uterus) and though I am scared (and my DH is as well) I have done as much as can to prepare and to stay in control. That includes grieving. It helps if you don't feel helpless; that's what this group and asking for help from friends and family has done for me.
Whatever you decide, make sure it is what is best for you, because if you aren't taking care of yourself, you can't really take care of everyone else. You sound like such a kindhearted woman, I wish only health and healing for you.


  Quote:
Originally Posted by brady44 View Post
I am new here (Although I have visited site for 3-4 years when trying to decide what to do and would love any help or encouragement. I have known I have fibroids for many years, but they did not cause excessive symtoms until about 3 years ago. Since that time I have tremendous bleeding, clotting, pain (at least 10 days a month) and pressure all of the time. When hysterectomy was first mentioned to me, I had just taken custody of my mentally ill sister's newborn, so I did not think it was the right time. Next, my college-aged daughter came home after Freshman year - pregnant. So, I promised all concerned family members that I would finally have the surgery after the baby was born. The first three months we were all exhausted and just when I scheduled for hysterectomy, my beloved grandson died in the care of a neighborhood babysitter. I spent the past year grieving and taking care of my heartbroken daughter. The point of all of this is: in all of this stress and time, my uterus has grown to the size of a twenty four week pregnancy, I am anemic, and one of ny ureters is being blocked from the pressure. My insurance ends in November and I am afraid it will be pre-existing if we get private insurance (husband laid off) . I am terrified of the surgery as my second opinion told me because it is so big, it is now more risky (blood loss) and will have to be a vertical cut, abdominal surgery . I was the last person he should have said that to because I am already so scared. I know the loss of my angel has caused me to have even more anxiety about my mortality, but I was scared before too. Is there anyone who had an extra large fibroid uterus that can relate? I have to get a grip, but I just start crying whenever my husband, parents, children start to pressure me to set the date. Please help me...........
  #5  
Unread 09-16-2011, 12:21 PM
Re: Very Large Uterus, Very Scared

I am so sorry for all of your loss. You sound like a very stong, loving and caring person. You have climbed so many mountains and I think that you will find your hysterectomy to be just a small hill since you are already in so much physical pain.

I share much of your story. I had my hysterectomy on the 8th of September. I have battled fibroids for over 10 years. I had one fibroid removal surgery, two blood transfusions and of late was unable to work or to go anywhere. That is not living. All of the females in my family had hysterectomys long before me and every one of them told me that it was the best thing they ever did. Not one regret. I too, had a very large uterus and looked pregnant. The doctor told me that he wasn't sure he would be able to remove it without a large incision, but I was fortunate that he was able to. I was ready to have it gone no matter how it got done! I think after you have this surgery you will be able to enjoy your family and be there for them much more.

I know it has only been a week for me and my journey has just begun, but I am already hopeful and happy to have a fresh start. You deserve to feel good and take care of yourself. I will keep you in my thoughts and I am here if you ever need to talk with someone.

Big hugssssss
Rox
  #6  
Unread 09-16-2011, 01:11 PM
Re: Very Large Uterus, Very Scared

hi I have just recently like 2 weeks ago had a total TAH and my uterus was the exact same size and had began attaching itself to my intestines once the doctor took it out i was told it weighed 3lbs. In my case the decision making process wasn't long because i was missing time from work became anemic and had a consnt sharp pain running up and down my entire right leg wich caused me constant pain while walking. i feel better now and i still have 4 weeks of recovery. In the end the final decision has to be one you are comfortable with good luck.
  #7  
Unread 09-16-2011, 02:28 PM
Re: Very Large Uterus, Very Scared

I'm so sorry to hear about your loss.

I too had a huge uterus. I had TAH on 8/15, VERTICAL incision. I was so scared and scared of the scar it would leave. It isn't so bad. It is what it is and there was no other way it could be done. I'm still glad I had it done.

Mine went from a 12 week size to almost 30 week size within 2 months. It wasn't like I was living with this huge thing in me and not doing anything about it. I had to do something quick. By the time I got through more tests, doc visits, blood work, etc. It had gotten so huge.

You will be sore for a while and in "pain" for about a good week. After that, you'l just be tired, sore and uncomfortable. By week 3, you'll be getting around much better. Just remember to REST REST REST for the first couple of weeks.

I just checked my insurance statements online this morning and my surgery ALONE was $10,832.57. That doesn't include the room, lab, doc's charges or the anesthesiologist's charges.

So, I wouldn't wait until you don't have insurance or a new one. You will be seen as pre-existing and they won't pay for anything pertaining to your issues for at least a year. I know there was no way I could've waited another year to have my surgery. The longer you wait, the harder it is to remove.

You'll be ok.

  #8  
Unread 09-16-2011, 04:18 PM
Re: Very Large Uterus, Very Scared

I'm sorry for your loss and understand how emotional all of this is. I too had an extremely large uterus because of fibroids, I think it was over a 5 month pregnancy. At first my surgeon told me that he may not be able to perform the procedure without the vertical cut, but he went in above my belly button, so my incisions look like a rainbow.

My point is that there may be way without the additional cut, but if not with your support system during your healing you will feel better in the long run.

My prayers are with you as you decide which direction to take. ((HUG))
  #9  
Unread 09-16-2011, 05:01 PM
Re: Very Large Uterus, Very Scared

hi,
i wish i could pull something out of a hat that would make everything better...
am so sorry this is all happening to you
life sure isn`t fair
i was/am/was crazy worried and mine is far less complicated
((hugs)) if ok....
i don`t know yet how big mine is, i go for an mri on the 21st...
am getting a da vinci, I was able to ask my ((second opinion)) wonderful doc questions, which he just smiled and nodded and said all the most perfect things... he said if mine was too large he would just make little pieces...i wish he could be your doctor...

the mayo clinic site has information that may help with a non surgical approach....but it kinda sounds you may be past that...
i wonder if your area might have a hospital willing to take on your case...(and if they did, am sure you would be given special care, if you were to be a case study or helping in learning...am just thinking here, i have no idea...am trying to help....and i shouldn`t think and type...
i wish i had an answer
someone once said..."you have to take care of yourself if you want to take care of others" of course the reply is "as soon as i get time..."

honest...they love you,
you not what you do for them (although that is great and above and beyond)...they love you...please take care of you hun.
warmest wishes,
~michelle
  #10  
Unread 09-16-2011, 07:25 PM
Re: Very Large Uterus, Very Scared

I am so sorry for your loss. You are a very kind, and sweet woman who has put everyone else first. Now, it is time you take care of this ASAP. Schedule this surgery ASAP ( insurance is going to run out soon). I had my surgery on September 9, I was able to schedule it in 10 days. My surgeon is in Miami, ( *** ) he is amazing, kind and gentele...I wish you could see him. Maybe he could do it ROBOTIC like he did me. I was told due to the size of my large uterus (the size of a 17 week pregnant woman ) hemay have to cut me vertically if I started to bleed our of control, that did not happen. I have 6 incissions, and also had my my left Ovary removed due to a 9 CM cystic mass, waiting for path results. Its been 8 days since my surgery, I know that is not long, but I do feel much better. Please dont't wait. I was so scared three days before my surgery, I had to go to church, I also kept my mind busy at work, training my two replacements while Im out for medical. Please take of yourself. DONT make matters worse dont put yourself in more danger. Your sisters's baby needs you, your daughter needs you and your family. Just do it! GOD will give you the strength to go through this. Take Care, GOD bless you, Mariaelana.


  Quote:
Originally Posted by brady44 View Post
I am new here (Although I have visited site for 3-4 years when trying to decide what to do and would love any help or encouragement. I have known I have fibroids for many years, but they did not cause excessive symtoms until about 3 years ago. Since that time I have tremendous bleeding, clotting, pain (at least 10 days a month) and pressure all of the time. When hysterectomy was first mentioned to me, I had just taken custody of my mentally ill sister's newborn, so I did not think it was the right time. Next, my college-aged daughter came home after Freshman year - pregnant. So, I promised all concerned family members that I would finally have the surgery after the baby was born. The first three months we were all exhausted and just when I scheduled for hysterectomy, my beloved grandson died in the care of a neighborhood babysitter. I spent the past year grieving and taking care of my heartbroken daughter. The point of all of this is: in all of this stress and time, my uterus has grown to the size of a twenty four week pregnancy, I am anemic, and one of ny ureters is being blocked from the pressure. My insurance ends in November and I am afraid it will be pre-existing if we get private insurance (husband laid off) . I am terrified of the surgery as my second opinion told me because it is so big, it is now more risky (blood loss) and will have to be a vertical cut, abdominal surgery . I was the last person he should have said that to because I am already so scared. I know the loss of my angel has caused me to have even more anxiety about my mortality, but I was scared before too. Is there anyone who had an extra large fibroid uterus that can relate? I have to get a grip, but I just start crying whenever my husband, parents, children start to pressure me to set the date. Please help me...........
Reply

booklet
Our Free Booklet
What 350,000 Women Know About Hysterectomy: Information, helpful hints as you prepare and recover from hysterectomy.
Answers to your questions
Register




Thread Tools

Forum Jump

Similar Threads
From This Forum From Other Forums
43 Replies, Last Reply 05-03-2012, Started By Dormouse
6 Replies, Last Reply 06-17-2010, Started By Joeanne
13 Replies, Last Reply 01-26-2009, Started By Portland
10 Replies, Last Reply 01-22-2008, Started By hosehag
6 Replies, Last Reply 06-10-2006, Started By jazziem
1 Reply, Last Reply 02-27-2005, Started By deke
8 Replies, Last Reply 11-10-2004, Started By sandwoman
3 Replies, Last Reply 04-22-2004, Started By newgal
4 Replies, Last Reply 04-15-2004, Started By Michelle17
22 Replies, Last Reply 11-28-2003, Started By lkovalic
0 Reply, Hysterectomy Recovery (post hysterectomy)
0 Reply, Vaginal Hysterectomy Stories
5 Replies, Hysterectomy Options and Alternatives
4 Replies, Hysterectomy Options and Alternatives
9 Replies, Hysterectomy Recovery (post hysterectomy)
8 Replies, Hysterectomy Recovery (post hysterectomy)
24 Replies, Hysterectomy Recovery (post hysterectomy)
8 Replies, Hysterectomy Options and Alternatives
5 Replies, Hysterectomy Recovery (post hysterectomy)
9 Replies, Hysterectomy Recovery (post hysterectomy)



Advertisement

Hysterectomy News

July 9,2020

CURRENT NEWS

HysterSisters Takes On Partner To Manage Continued Growth And Longevity
I have news that is wonderful and exciting! This week’s migration wasn’t a typical migration - from one set ... News Archive

TODAY'S EVENTS

Calendar - Hysterectomies - Birthdays


Request Information


I am a HysterSister

HYSTERECTOMY STORIES

Featured Story - All Stories - Share Yours

FOLLOW US


Your Hysterectomy Date


CUSTOMIZE Your Browsing  


$vbulletin->featuredvideos is not an array!
Advertisement


Advertisement