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Going in on February 19th, feeling fear.
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01-31-2014, 08:24 PM
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HysterSister
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Posts: 19
Hysterectomy: February 19th, 2014
Surgery Type: DvH
Ovaries: Kept 1 or both
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Going in on February 19th, feeling fear.
I feel the need to give some background. I did a bit in my introduction. But a quick recap.
I'm Jami, I'm 37, single, I have Polycystic Ovary Syndrome and severe anemia.
My iron levels have gotten as low as 7. Even after a year on Irospan (iron pill just for women) I never got above a 16. So I had infusions and for awhile I felt great. But every time I had my period my iron would drop dramatically. I'm now back to where I was - tired all the time, hair breaking, nightmares, restless legs, even moments where I feel utterly without hope.
The doctors did all sorts of tests, even scoping me, and it all led back to the fact my body doesn't absorb iron and my extremely heavy and long periods.
I did a lot of research - the usual treatment would be an ablation, but my sister-in-law had one and within five years she had to have a hysterectomy because the scar tissue was falling out. I decided it was best to cut out the middleman.
But my usual gynecologist wouldn't even discuss it with me. (And she's the one who suggested the ablation in the first place.) She wanted to put me back on the pill even though it does not work for me and even the non-estrogen ones mess me up majorly. (High blood pressure, mood swings, headaches, bleed throughs, etc.) She's normally a great doctor, but she had made up her mind she wasn't going to do this for reasons I'll talk about privately, but after reading the TOS I'm not comfortable mentioning here.
Seems like most of my doctors felt that way. But my endocrinologist sent me to another GYN who listened to me on the subject and agreed with me. Especially since I've got four big risks for cancer of the uterus - fat, PCOS, over 30, and celibate. I saw the surgeon today and I'm already scheduled for the 19th. (In fact, they wanted to do it sooner but I really needed the time to make arrangements at work plus I have an appointment to have a cavity filled the day after they wanted to do it.)
The reason I'm afraid is because of my weight this negative voice in the back of my head keeps telling me I'm going to die on the table. My oldest brother died during a surgery, but they brought him back. He was a lot heavier than me, of course, and he was having a major operation on his leg. Now admittedly I have that voice every single time I have any sort of anesthesia. Even Novocaine gives me the willies.
I'm also worried about the cost. I don't make a lot of money and while I have good health insurance, I'm afraid this will be something either my parents will have to pay for me, or I'll have to raise money to pay off through a site like Go Fund Me.
They're going to leave the ovaries. After this I can start iron infusions again and not lose as much.
I can't believe it's happening this fast. I thought it would be months before it would be done. I thought they'd put me on a strict diet first.
I can't believe what I wanted so badly is now scarring me terribly.
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01-31-2014, 08:52 PM
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HysterSister
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Posts: 51
Hysterectomy: February 11th, 2014
Surgery Type: TAH/SAH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
I am having mine on the 11 th. If they were able to get a good enough endometrial biopsy. I am over weight too and nervous about anesthesia. I am ready to get it done and over with though. Mine is from very large fibroids. Will have to be abdominal too. I had 2 csections so that part doesnt scare me too much. Oh....and i have had thermal ablation. It bought me 5 years of no anemia till now.
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02-01-2014, 10:28 AM
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HysterSister
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Posts: 15
Hysterectomy: January 23rd, 2014
Surgery Type: TLH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
JamiJR,
I know it is scary, and there is so much to think about. I am 9 days post op and has some of the same concerns. I think you will be amazed how quickly some of the things that have plagued you are resolved.
As far as your weight, if you were not a candidate for surgery, they you would not be on the table. You are in the hands of skilled, trained experienced professionals. Take a deep breath... and start thinking of how life is going to be WITHOUT all the troublesome symptoms holding you back in life! Good Luck!
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02-01-2014, 12:05 PM
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HysterSister
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Posts: 19
Hysterectomy: February 19th, 2014
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
Thanks. I'm still scared but I feel somewhat better.
I'm also trying to plan for other things. I have a little dog. (7.2 pounds.) I guess someone else will have to walk her for me. Luckily I live with my parents. Mom's handicapped which is one of the reasons I still live here. And I just can't afford to move out.
Mom and I are having a disagreement on one thing. She thinks when I tell my boss & supervisor I should tell them what kind of surgery. At this time, even though they're both women, I think it's none of their business. Maybe I'll change my mind, but I can't right now think of telling them.
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02-01-2014, 01:04 PM
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HysterSister
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Posts: 609
Hysterectomy: September 30th, 2013
Surgery Type: DvH
Ovaries: Removed both
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Re: Going in on February 19th, feeling fear.
One time after my surgery I forgot to have a pillow on my lap and my little dog's nails hurt so much when he suddenly decided to leap off my lap. I'd recommend padding between you and the dog after your surgery! :-)
Probably your bosses are trained about not needing to know details, you certainly shouldn't have to tell them what kind of surgery.
I told everybody at work and it turned out my manager's manager and one of my teammates had each had hysterectomies in the past (as well as gall bladder and appendectomies)! I guess it is not uncommon surgery.
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02-01-2014, 01:55 PM
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Posts: 17,510
Hysterectomy: May 17th, 2011
Surgery Type: TAH
Ovaries: Removed both
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Re: Going in on February 19th, feeling fear.
This surgery is much to digest and process. The mix of emotions is normal. Having a hysterectomy is a BIG DEAL, and it is a surgery that should not be taken lightly. You need to weigh the pros and cons of having this surgery for your long term health with your doctor. Is it better to have it or not to have it?
I understand your concern about being overweight. Here is an article that my provide some information:
Special Considerations for Overweight Hysterectomy Patients
Ultimately, you need to make the decision that is right for you. We will support whatever you decide.
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02-01-2014, 02:14 PM
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HysterSister
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Posts: 19
Hysterectomy: February 19th, 2014
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
I've already explored all the other options - it's taken two years to get to this point. My doctors did all sorts of tests right down to scoping me at both ends and making me swallow a capsule camera to check the places the camera can't reach.
My GYN originally suggested an ablation but then suddenly changed her mind. I won't repeat what she said as after reading the TOS on user names I'm uncomfortable mentioning it.
I can't do birth control, I can't have an IUD, ablation would just mask cancer should I develop it.
The only thing at this point that would stop me from doing it is if Blue Shield says they won't pay for it.
So it's happening. I'm just scared cause of the paperwork mentioning that death is a possibility. And there's so much I want to do. I want to get discovered as a singer. (I put myself out as much as I can, but my energy is so low I often can't even get up to practice.) I want to catch at least a ten pound trout if not bigger. I want to go to Comic Con. I want to meet Stan Lee. I want to see Peter Capadli as the 12th Doctor. I want to be the inspiration behind a great fictional character. I want to go to New Orleans. I want on an adults only cruise. I want to go ghost hunting. I want to make a music video where I sing "You're So Vain" to a Loki cosplayer. I also want to make a Doctor Who themed music video with me singing "A Foggy Day In London Town."
There's so much I want to do and right now I have difficulty doing it cause I'm tired all the time. And I don't want to die without doing those things.
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02-02-2014, 10:28 AM
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Posts: 17,510
Hysterectomy: May 17th, 2011
Surgery Type: TAH
Ovaries: Removed both
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Re: Going in on February 19th, feeling fear.
Oh Sweetie,
I know that the paper work says "risk of dying". Any surgery has that - not just this one. I have had four surgeries over the years, and the paperwork for all stated that. And while that is true, it is rare. I know it happened to your brother (they did bring him back, though), so for you it makes it even more real. Surgery is scary - you are not alone in this fear. Know that you will have many doctors and nurses watching over you, monitoring you, and they will see you through this.
You have a wonderful to-do list. I am sure you will be able to do those things when your surgery is over and you have recovered. I understand that you have tried other options, and that this is the best solution given your condition.
You are not alone - we are here for you.
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02-02-2014, 11:07 AM
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HysterSister
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Posts: 27
Hysterectomy: January 23rd, 2014
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
I was so sure the anesthesia was going to do me in! The only thing that happened was being greeted by a huge team of very positive professional caregivers. It was amusing to see jow each individual had such a specific role and were very good at doing it! I ate as healthy as I could a couple weeks prior to surgery and avoided inflammatory foods. I felt protected in every way. Even the gown was awesome and warm. I was so worried about being exposed but did not feel that way at all. The gown covered my body and arms and was full of thick warming chambers. I dreaded the mask and surrendering by counting, but apparently they didn't even have to do that! I went out with the pre-anesthesia medicine. I woke up feeling very peaceful and had no nausea until I took pain medicine at home. I only took them that once then ibupuprofin to keep the swelling down. I am 10 days post-op and feeling good. Try to stay positive and focus on having only a good outcome! It is very scary, but none of my fears were even close to the real reality. I am so relieved to have it over with. You will feel that way soon then go do all those things you want to do and do it with more vigor and energy! Sending prayers to you all.
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02-07-2014, 08:54 PM
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HysterSister
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Posts: 19
Hysterectomy: February 19th, 2014
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Going in on February 19th, feeling fear.
I had my pre-op exam today. Getting closer. I'm having panic attacks at night though when I think of the anesthesia. The surgery doesn't give me the willies at all. It's just the anesthesia - while I've been under it before lots of times from childhood on (LOTS of bladder and kidney problems that required me going in and being put under while they filled my bladder with water) - I just don't like it at all.
I wish I could've talked to the anesthesiologist today.
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