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losing it...Update:  lesions & blood vessels in my uterus losing it...Update: lesions & blood vessels in my uterus

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  #1  
Unread 03-28-2012, 06:29 AM
losing it...Update: lesions & blood vessels in my uterus

I had a scope performed a week ago today. After, my fiance was told that I need a TAH (which I pretty much new was going to be the outcome). He was also told I have extreme endow and scar tissue, my ovaries are meshed to something (still haven't talked to my doc myself, and something all Bill could remember), doc couldn't laser anything or to dnc because my insides are such a mess, and the best part was that the doc told bill I have endo covering some sort of lining (I'm pretty confident its covering my omentum)and the doc said he had never seebn this before. I was released from the hospital and immediately had to go to Bills mothers funeral. So after that emotional roller coaster of a day (along with many prior from my nerves and his mother passing) I called my obgyn office and was told my doc was on vacation ((yay for him....insert sarcasim) and would be back April 2, so I made an appointment but was told that once my report came in another doc would call me. Yesterday I called their office again, since no one had called back. Upon a nurse calling me back, her answer to everything (after telling me another doc had looked at report) was you need to make a follow up with Dr. Abc. I ask can someone at least tell me what was found, or at least ad much as my finance was told...same answer. So I proceeded to hang up on her...not my finest moment, but I wanted yo scream at her "if a doc had told you second hand that he saw something he'd never seen before inside of you, and that you're insides are a mess, would you want to wait 12 days to find out what's wrong?" There are 5 other docs in this practice, I know someone had to be taking care of his patients while he is gone, why cant I talk to that guy? Very few of my friends have had these probs. (I am 35) We have, so no one understands, I didn't really understand til now. I thought I was ok with hysterectomy but now that I know its going yo happen I'm a mess, and the unknowns that my doc can only answer are driving me crazy. My family and friends are trying, but right now I don't even want to talk yo anyone. I've only gotten negative feedback from those I know that have had the surgery...ive been told it's the worse thing ever and ill be a diff person when I wake up. Bill is trying to be comforting, but he is a mess with the passing of his mom and my kids are too young to begun to understand. Six days til I get answers.......
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  #2  
Unread 03-28-2012, 06:41 AM
Re: losing it...

Oh sweetie. Try not to worry too much. If it was anything serious I'm sure they would have you come in. I had my hyster 8 weeks ago and had a similar mess in my uterus along with 9 huge fibroids. Try to use this time to research the different hysterectomy options available as well as whether or not you want to keep your ovaries. Go into your appt well informed and ready to make an educated decision.

As for the negative people. Ignore them. A hysterectomy is not the worse thing ever and you will not be a different person. I got the same load of bull from my mother who had a hyster almost 30 years ago. Modern medicine is amazing! I had a daVinci robot assisted hyster. I had 4 small holes in my stomach and everything was removed vaginally. I woke up with no pain, just discomfort, and I was back to work in 8 days. An abdominal hyster has a longer recovery time but the restrictions are all the same no matter which surgery you choose. I feel like a new and better person now that I no longer have excessive bleeding and pain every month. I hope this helps. Stay strong and positive and your experience will be a good one.
  #3  
Unread 03-28-2012, 06:49 AM
Re: losing it...

My main negative person is my mom as well. She had hers when I wad. 12, so 23 years ago...I'm sure, even though I have to have it done the old way that advances have been made in 20 years. The few friends that have had hysterectomy had them vaginally. I do know that everything had to be removed, the doc told Bill that everything must go (sounds like I'm having a young out of business sale lol) I have been in constant pain since my scope, more than I was prior to it...I don't want to be in pain anymore, but I also don't want yo be crazier than I already am thanks for your input...this forum has been so helpful, I'm very thankful I found it
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  #4  
Unread 03-28-2012, 07:00 AM
Re: losing it...

  Quote:
Originally Posted by nhollan1 View Post
My main negative person is my mom as well. She had hers when I wad. 12, so 23 years ago...I'm sure, even though I have to have it done the old way that advances have been made in 20 years. The few friends that have had hysterectomy had them vaginally. I do know that everything had to be removed, the doc told Bill that everything must go (sounds like I'm having a young out of business sale lol) I have been in constant pain since my scope, more than I was prior to it...I don't want to be in pain anymore, but I also don't want yo be crazier than I already am thanks for your input...this forum has been so helpful, I'm very thankful I found it
There are several options available. Check the link for "Hysterectomy Options" above if you don't want to have an abdominal incision. And if your not completely convinced with your dr's plan don't be afraid to get a second opinion. Some docs only perform certain types of surgery and don't offer the others. This is major surgery and you should feel 100% confidence in your decision and with your doctor. Good luck!
  #5  
Unread 03-28-2012, 07:10 AM
Re: losing it...

I'm sorry ppl are stressing you. I had my SAH 12 days ago and I feel fabulous. My uterus was too large (and the fibroid) to do it any other way but through my abdomen. I am 43 yr old, never had a c-section and I was very very nervous. I'd hear from ppl saying OMG the pain is horrible, sex will never be the same, etc. Well I can tell you that I spent 4 days in the hosptial (my Dr was ok with me staying as long as I wanted) and I did it without pain meds. I know pain tolerance is different with everyone but the pain meds they gave me in recovery was Dilaudid. It did nothing for the pain but got me nauseous...I just chose to deal with it because to me the pain was a 5-6 on a scale of 1-10. I was sent home with a script for percocet but didn't fill it. I'm telling you this not to make myself sound strong or to pat myself on the back but to let you know that the surgery isn't the worst thing ever. Did I have all easy days since day 1? No...on day 5 and day 7 I over did it and had excruciating pain that took my breath away...but I quickly realized that I had to really really take it easy. Once I refused to overdue things and sat around relaxing, it's been great since Day 8 up to today. I even slept without my belly binder last night.

I just want you to know that if you choose to have the surgery it's not all bad...there are many of us that have had good outcomes (knock on wood) and your mom needs to realize that surgery done more than 20 yrs ago have been greatly improved.

GL to you and I hope things ease up for you in the stress dept.
  #6  
Unread 03-28-2012, 09:47 AM
Re: losing it...

Hi
I am sorry that life is so stressful right now. You've got a lot going on, but that is how it goes sometimes, right?

I am having my hysterectomy on Friday, so I can't give advice about how it'll feel, the recover, etc. What I can support you on is the doc thing. I agree that you could use the time to do research. That is a good plan. But I also know I'd freak out not knowing what the doc said after the surgery. Personally I'd camp out at the doc's office and refuse to leave until someone qualified read the report and talked to me about it. Just because your doc is on vacation is no reason to leave you hanging until he gets back. I am sure your insurance is not waiting 2 weeks to start processing payment for the procedure. So I'll be devils advocate, and say go to the office and nicely, but firmly tell them you are not waiting 12 days for the report.

Be well and don't let any negativity bring you down. No one understands your uterus like you.
  #7  
Unread 03-28-2012, 12:13 PM
Re: losing it...

I would march my butt in there, tell them look...either get a doc that can talk to me, or give me my records and I will take them elsewhere. Period. That is very close to what I had to do when I found out I have cervical cancer (I found out by accident from another doc who thought I knew) and my doc was out. I went in, got my records and took them to another doc.
  #8  
Unread 03-28-2012, 12:48 PM
Re: losing it...

Thanks so much everyone. I'm trying to not get overwhelmed emotionally (I think it may be to late), I was having a really rough morning with my kids, and I feel like someone is squeezing my insides, I'm not sure if it was just my venting or your alls responses, or both but emotionally I'm feeling a lot better emotionally now
  #9  
Unread 04-01-2012, 08:54 AM
Re: losing it...

  Quote:
Originally Posted by nhollan1 View Post
Thanks so much everyone. I'm trying to not get overwhelmed emotionally (I think it may be to late), I was having a really rough morning with my kids, and I feel like someone is squeezing my insides, I'm not sure if it was just my venting or your alls responses, or both but emotionally I'm feeling a lot better emotionally now
I'm so glad your feeling better emotionally. That's what we are all here for. To support our sisters. Good luck with your doctor.
  #10  
Unread 04-01-2012, 09:08 AM
Re: losing it...

I can totally understand how you are feeling. First, they really need to have one of the docs talk to you. I had a exploratory lap and was told that my insides were a total mess and that a hyst was not a solution.
When I had to have my hyst, I went to a gyn oncologist. I would highly recommend that you consider a specialist. Especially if he has never seen this before. I wonder how experienced he is with dealing with endo. I would first get all the answers from what he saw from him.
Here is my big caveat. A hyst will not cure endo. Even with removal of both ovaries it will not always work. So I would find an endo specialist and consult him/her before having surgery. I didn't do this and do regret not going to one. My hyst did not cure the endo and in fact, has now led to chronic pain. I have also discovered that if you have pelvic pain, the docs have one heck of a time figuring it out.
I don't want to scare you, but you need to know the options before having the surgery. Just because he recommends it, doesn't mean you have to have it. Find out what the alternatives are and then you can decide what is best for you. There are a lot of success stories here but also some not successful stories of hyst problems after. It isn't an easy decision but getting all the info you need is critically important.
Sending tons of hugs and support.
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