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Scared to death!!!!! Scared to death!!!!!

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  #1  
Unread 03-12-2007, 11:00 PM
Scared to death!!!!!

I am terrified. After years and years of suffering through endometriosis, trying all of the treatments and delaying it as much as possible, I was presented with the fact that the only thing left to do was a hyster. Last week they talked about taking my uterus only. I went in today to talk some more about it and schedule my date for the pre-op and op. and my DR told me that since my endo was so bad both of my ovaries would go as well ( she said the endo would continue growing on them ). I wasn't prepared for that news. AT ALL. I really wasnt fully prepared for the news about taking my uterus, but the past few days I had come to better accept the decision. Until today. Now so many fears and questions are running through my head. I came home and had a full fledged panic attack. I will be 30 in May. I have pretty severe migraines along with seizures.When I was on BC pills my BP went so high they were afraid I would have a stroke. So I am very worried about what HRT or menopause will do to me. Especially since the DRS in this area aren't too forgiving when it comes to pain releif. The addiction to narcotic pain killers in this area ( Eastern KY) is out of hand, so they think that anyone who walks into the ER is just looking to get high, and they don't stop to think that maybe, someone is legitamatly in pain. Unless you arrive in an ambulance they likely will not give you anything. This is what I am scared of. What if menopause, or the HRT causes my nuero system to go crazy. What if I suffer from debilitating migraines, one after another ( right now I have maybe 1 really bad one every other month)? What about my seizures, will they get worse? My moods? Will I become a monster that my husband and children hate? Will I loose who I am really? Because as of today I feel like that is happening already. Will I have the energy to participate in life, mine and my family's? I know I have to weigh the pros and cons, but right now it seems like I am trading one ailment for another. And all I want is to feel better. To get on with my life. Right now, I am so anemic from loosing so much blood every month. I am so wiped out from the pain, the blood loss, the nausea and vomiting every month. I never fully recover from one period before the next comes again. And then I am bed bound for a week once more. I have so much confusion and fog running through my head right now. I don't know who to turn to because my friends don't understand. I just want to talk about it, they dont have to have answers, but I guess it makes them too uncomfortable, and that makes me feel awfully alone. My DH wont talk about it either. How do I prepare my kids for this? They are 5 and 7 yrs old. My mom is coming down for the weekend to help, since my op is on Friday. But then she has to go back home by Monday. My Dh will return to work on Monday, and my kids will return to school. Leaving me here to get them ready to go. I am having a laparascoptic hyster, so I know the recovery time is less than a traditional, but I don't think I will be feeling that much better by Monday. Or will I? GAH!!! So much is going through my head right now. And I am taking it all out on this poor keyboard! I guess I should stop now before this gets too long. I just need an outlet right now, I need to find others out there who know what I am going through. So to all who read this, thank you. I hope to get to talk to more of you soon.
Much Love
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  #2  
Unread 03-12-2007, 11:09 PM
It will be okay

toxicbettie-

You will be okay. A LAVH is easier to recover from. If all you have to do is get the kids feed and off to the bus then you will be okay. You can go right back to bed after that. Just have easily accessible foods for you and the family. Order out or have the husband pick dinnner up on his way in from work. I know your kids are young but if you have a talk with them I bet they will be more than willing to help around the house with small stuff. Hope everything goes okay. I will keep you in my prayers.
  #3  
Unread 03-12-2007, 11:36 PM
Scared to death!!!!!

I am so sorry you are going through this. I have endo too...but only opted to have my uterus taken. My ovaries didn't have severe damage.
As for your situation. Get a second opinion if you can...your insurance has to pay for it. Also, if there has been an MRI to show the endo then your doctor is probably giving you the best option.
Maybe things won't be so bad when the doc gets in there and you can always push and beg to keep at least the better of the two ovaries to prevent yourself from HRT for the time being and see if that works.
It can buy you some time...
But...you may or may not return later for the 2nd to be taken out.
I had lapro/I am a week out and tire pretty easily/also get pain if I sit up too long.
The older kid can help with the younger. DH can have them pick their outfits out the evening before/bathe them/pack their lunch and set up your food/snacks for the day he's gone.
Also have neighbors #'s nearby in case you need a hand.
Hope this helps! Just my opinion!
I'll be thinking of you...and waiting for you on the other side!!
It will all work out! Best wishes!
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  #4  
Unread 03-13-2007, 07:09 AM
Scared to death!!!!!

I forgot to add this in with my post. This is my 3rd opinion. My gyn that I had for years and years, who I dearly loved, had cervical cancer and is no longer in practice. She told me years ago that my problems would lead to this but she would do what she could to prolong the inevitable. So last year I went to a new DR, who told me right off the only thing she would do was a hyster. I was so mad at her I never went back. So I found another DR, which pretty much told me the same thing. With my history of migraines and seizures, lupron is a big no-no, so are forms of BC. My nuero is going nuts on me and I feel pulled in two different directions. It's like my 2 DRS are at battle with each other with treatments for me. So I don't know who or what to believe, so I just do my own reserch. Right now I just feel like I am going crazy. *sigh*
Another thing to add to the list of stresses...at the beginning of this month I received a letter stating that my insurance would run out the first of April ( I got married and was on a medical card, but my husband makes too much money for me to keep it ). My DH is going to put me on his but there is a year waiting period on pre-exsisting conditions and my gyn said it would be too risky to wait a year because of the amount of blood I am loosing each month. So here I am, having a surgery on March 23rd and Insurance running out on April 1st. But she said that she includes all of the pre-op, surgery and post op visits in one charge and she would work with me on anything else. So that kinda makes me feel a bit better on the financial end of it all.
  #5  
Unread 03-13-2007, 07:46 AM
Scared to death!!!!!

i am also sorry to hear you are going through this, but i will tell you that i believe you will feel like a new person when all is said and done. i am going to be 29 in may and i had my tah three years ago. it really scared me and i had alot of the same problems that you have described. i also had little ones to think about and no one to help me, but we made it through it and i feel like a better mom to them. i don't lay in bed in pain all of the time anymore, i can actually get up and get out without back, and pelvic pain. they have def. noticed a difference.
i won't say that having this done will be the end of all of the problems, but it sounds like a step in the right direction. i am fighting with problems related to my hormone, but this fight is something with in my control (endo wasn't) and i feel like making the decision to have the surgery and celebrate the end of a very long battle with my own body is the best decision i could have made.
i hope things go well for you and your family, have faith that you won't be given more than you can handle.
  #6  
Unread 03-13-2007, 09:19 AM
Scared to death!!!!!

Thank you so much for your reply. It makes me feel better to know there are others out there who can relate. I had NO idea until recently that my back and side pain was related to this. None of my DRS ever mentioned it. I have scoliosis too and just assumed it was causing the pain. But after reading many stories it sounds just like my pain. I couldnt do house work, like vacuuming or sweeping, anything that required me to move my lower back and waist alot, without doubling over in pain. I would bend down only to be able to find that I couldnt get back up straight. So I am hoping this will end too.
  #7  
Unread 03-13-2007, 09:32 AM
Scared to death!!!!!

Please be assured that most of us here have had a very positive outcome to our surgeries. I don't have the same issues as you, but if I had wanted to know for an absolute certainty how everything would be after surgery, I never would have had it done. I just knew that I did not want to continue living with the symptoms that I had that point, and the surgery was necessary in order to make a change in things. As for talking to your children about it, if you tell them you're going to the hospital for a surgery that will make you feel better, I think you will find their questions will show you how much detail you need to get into. They likely won't be as curious as you'd think. I would talk over the ovary thing with the doctor and see if one can be kept. Good luck to you!
  #8  
Unread 03-13-2007, 09:40 AM
Scared to death!!!!!

I too have very small children (3) and after my TAH it was not as hard as I first thought it would be. They seemed to understand that mummy was not herself and all were very good. My DH had 2 weeks off, then after that I was left to my own devices. I just took one day at a time and rested when I needed to. At 4 weeks post op, I am back to most activities, cleaning, driving, etc and feel great physically. I too had suffered with endo and I wouldnt change a thing now. I was very hesitant before the op, its such a big decision to make, but I feel better at only 4 weeks and can feel the benefits of surgery already. Its a lot better than being in terrible pain month in month out. I wish you all the very best andyou are in my thoughts. Take care x x
  #9  
Unread 03-13-2007, 10:05 AM
Scared to death!!!!!

I was really really scared too going into the surgery. I have 5 and 7 kids too and was really worried about how they would be effected (this was going to be 3rd surgery in 5 months). But it all worked out, the kids were great and very understanding. They loved "taking care of mom" and being my "special helpers." It was actually good the kids went off the school so it was just quiet during the day and I could rest. My hubby helped out with everything else and we got someone else to bring the kids home from school. The house is still a mess, but we will all live. At 2 weeks now I feel "normal" again and am starting to pick up daily activites again. I wish you the best, and I'm thinking of you!
  #10  
Unread 03-13-2007, 10:53 AM
Scared to death!!!!!

Dear Scared,
I had my hyster on March 1 and wanted to tell you what I had experienced pre-op and post-op. I had been bleeding and cramping almost non-stop since Thanksgiving so I scheduled a pelvic exam right after the holidays. My internist said that I felt "lumpy" and ordered an ultrasound. Two days later I had a major flood out that landed me in the emergency room. The ultrasound there and subsequent CT scan later that week confirmed a "huge" (as my dr described it!) fibroid tumor. My ovaries weren't well visualized and one appeared to have a cyst which started to make me worry. Over the next several weeks my new gyn and I discussed ALL of the various options after the uterine biopsy showed no cancer. Our original plan was to do a TAH because of the size of the fibroid. I am 49 years old and had started to feel at peace with that since I too, suffer from migraines. I was pretty set against HRT because I was also dealing with my third mamogram and breast ultrasound since 1/5/07 .............I have 2 fluid filled cysts and a funny lymph node that they are watching. Anyways, at my pre-op appt my dr surprised me by saying that he thought he could remove just my uterus with a LAVH and would only take my ovaries if they presented a problem by being "in the way" during the actual surgery. I left feeling very unsettled and for the next 6 days really agonized over this change of events. I even dreamed that there was something wrong with my ovaries and we had to go back later to remove them! My dr had given me his pager number so I decided to call him and tell him of my fears and asked him to go back to our original decision to take everything. He agreed even though I could sense some hesitation on his part.
My surgery went well but with some surprising results! The tumor ended up being between 8 and 13 cm...........somewhere between grapefruit and cantalope size! He also discovered that I had endo covering both ovaries and cysts on both! The right ovary was completely adhered to the uterine and pelvic wall and required a lot of dissection to remove it. When he came to see me the next day he told me he had talked to his staff about me. He told them to always listen to the patient's intuition! He admitted that he never would have been successful in removing the uterus with a LAVH procedure. At my first post op visit he said the we had surely done the right thing with a TAH.
To make a long story short, I wanted to tell you that I have been on a hormone patch since the first day post op with not one problem! Not even ONE headache! The relief from my perimenopausal hot flashes has been incredible! I know that I still have to be vigilant about the breast situation but they symtom relief from the TAH and HRT has been worth it already! SO...........good luck to you, hope that you make the decision that is right for you and feel better soon!
Take care and I'll keep you in my prayers. March One
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