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Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

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  #1  
Unread 03-19-2014, 09:02 PM
Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

Hi, I just turned 29 and I was recently diagnosed with complex endometrial hyperplasia with atypia...they pretty much think I have cancer and I have a D&C scheduled for April 1st but they also say that I've only got the option of a hysterectomy if it looks like there is cancer. the doctor says my cells look so abnormal that I am definitely looking at a hysterectomy. on top of being pre-cancerous apparently i have been diagnosed as post-menopausal/premature menopause. I don't even know what to look into. I just need some direction. I guess what I mean is what am I looking at since I am "young" still? help please.
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  #2  
Unread 03-20-2014, 12:00 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

I had a hysteroscopy and d & c last week. After the surgery, my doctor said she really didn't like the look of the tissue she took out and she was pretty sure it was cancerous or at least pre cancerous (I had previously had a biopsy with complex hyperplasia w/o atypia). She called this week and said the lab was done testing my tissue and there was no cancer or hyperplasia. So they can't always tell from looking at things, but I think the biopsy result of complex hyperplasia with atypia is pretty definite. I've done a lot of reading lately and 29% of women with this diagnosis end up with endometrial cancer, which is why they treat it with a hysterectomy.

Have you had menopause symptoms? What symptoms did you have before the hyperplasia was diagnosed?
  #3  
Unread 03-20-2014, 12:50 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

I bled for 6 months straight and I'm talking shoe plus tampons AND pads at the same time. then I had like a 2 week break, then it came back and I bleed for two more weeks and it hasn't come back in 5 months. I never noticed if I had any typical menopausal symptoms? I have always run pretty hot and so a hot flash never occurred to me. if anything now I get the opposite, I feel like I am freezing. Other than that, none? well, back pain, I get bloated, I feel like I might rip someone's throat out with how suddenly I get mad, I feel like crying like every other day, and I just have zero energy....I thought maybe I was just depressed or something. I had two biopsies and the second one is what they used to diagnose me.
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  #4  
Unread 03-20-2014, 01:11 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

Horror5: I am three weeks post laparascopic assisted vaginal hysterectomy for the same diagnosis. Final pathology reports from uterus removed during surgery was uterine Cancer stage 1. What I have learned in all my research is that between 25-40% of women with complex hyperplasia with atypia turn out to have uterine cancer. As you are so young, and if you wish to preserve your ovaries, you may want to discuss with your doctor/surgeon the possibility of sparing your ovaries. Lots of information in a short period of time and your mind is whirling but do your research and talk to your doctor. Since this is such a nerve wracking time, you may want to write your questions down before your next appointment and bring someone with you who can be your second listener. My husband was present when I received the unexpected bad news and I was very glad because I only heard half of what my doc was saying after the word cancer. AND I am an Oncology nurse who does has been in the field for many years. However when it happened to me, I reacted as a patient and not an expert and was very glad for the extra support during visits. and yes i also forgot to ask important questions during my appt. So write our questions down, bring someone for support and do your research. This site is probably the best site I have found on the internet. You can do a search for hysterectomy and under 30 to bring up some forums that will match your scenario. Good luck to you. I have recovered well since my procedure and found this site the place for good answers and advice.
  #5  
Unread 03-20-2014, 01:13 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

forgot to mention that the earlier this is caught, the outcome is very positive.
  #6  
Unread 03-20-2014, 01:17 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

  Quote:
Originally Posted by horror5 View Post
I bled for 6 months straight and I'm talking shoe plus tampons AND pads at the same time. then I had like a 2 week break, then it came back and I bleed for two more weeks and it hasn't come back in 5 months. I never noticed if I had any typical menopausal symptoms? I have always run pretty hot and so a hot flash never occurred to me. if anything now I get the opposite, I feel like I am freezing. Other than that, none? well, back pain, I get bloated, I feel like I might rip someone's throat out with how suddenly I get mad, I feel like crying like every other day, and I just have zero energy....I thought maybe I was just depressed or something. I had two biopsies and the second one is what they used to diagnose me.
Have you been checked for anemia? With all the bleeding and then feeling cold and tired, you might be anemic.
  #7  
Unread 03-20-2014, 02:55 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

Thank you so much for all the advice! I have been doing a lot of research and I can see that now is better than later, but honestly I'm just scared. They intend to keep my ovaries in if it looks like I don't have cancer there or the cervix. I am scared of the procedure...I feel like I don't know what questions to ask. thank you so much.
  #8  
Unread 03-20-2014, 02:57 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

I forgot to mention that I am not anemic, which shocked them through and through. the doctor said that astonishingly I am producing blood as fast as I lost it. they think I am a sort of hybrid person. they actually called me that hahaha. thank you for the concern.
  #9  
Unread 03-20-2014, 03:36 PM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

I forgot to mention that I am not anemic, which shocked them through and through. the doctor said that astonishingly I am producing blood as fast as I lost it. they think I am a sort of hybrid person. they actually called me that hahaha. thank you for the concern.
  #10  
Unread 03-21-2014, 05:47 AM
Re: Hysterectomy for complex endometrial hyperplasia with atypia & I am so lost

Please ask your doctor about Megace. It has helped some women. And being that you are so young it may help.
My friend had a outcome using this and avoided a hysterectomy. She is fine today.
Every case is different of course but it never hurts to ask about all of your possible options.
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