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Endometrial Hyperplasia Endometrial Hyperplasia

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  #1  
Unread 07-18-2001, 10:25 AM
Endometrial Hyperplasia

Has anyone else lived with or had a hysterectomy because of endometrial hyperplasia? I've been treated for it for 11 years and now my doctor thinks I should have a hysterectomy. I've changed doctors several times because of moving to a different state, so doctors' opinions have not been consistent. I like this doctor but I thought if I held out for menopause, I'd be ok. Now I'm hearing that's not necessarily true. I'd like to hear some other experience with endometrial hyperplasia.
Basi
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  #2  
Unread 07-18-2001, 11:15 AM
Endometrial Hyperplasia

Hi, Basi. I was diagnosed very unexpectedly last January with complex endometrial hyperplasia with atypia after a D&C. I am 40 and had not had any symptoms. I went on Megace for 3 months, which nearly drove me crazy, then had an LAVH on May 30. The pathology report showed the hyperplasia was STILL there. My doc said it would definitely have turned into cancer at some point if it was that resistant to the high doses of progesterone I had taken. I decided I didn't want to live with the worry and uncertainty so that's why I went ahead with the hysterectomy. I have recovered quickly and I'm almost feeling back to normal 7 weeks later. It was something I really dreaded but I'm glad it's all over. I'll tell you what my doc says over and over: This is not something you play around with. Good luck and God bless with your decision.

Laura
LAVH (kept ovaries) 5/30/01
For complex endometrial hyperplasia with atypia
  #3  
Unread 07-18-2001, 12:45 PM
Don't forget, it's a pre-cancerous condition

I had been "holding out" also, with prolapse, off and on fibroids, pain and heavy bleeding problems. After seven years, I could take it no more and asked my doc if she would consider performing a hysterectomy. I am 48 years old, but couldn't "hold out" any longer.

In March, tests revealed that I was severely anemic and had endometrial hyperplasia. Doc said my condition was probably about two years old (I see my doc every year) and was causing the heavy bleeding. I was bleeding heavily and my periods ran 10-12 days per month, sometimes twice a month.

After researching, and speaking with my doc, the one thing that was impressed on me is that hyperplasia is a PRE-CANCEROUS condition and that there are not many options.

I'm concerned that you've had it so long. Have you ever had a biopsy? What were the results?

My doc IMMEDIATELY performed a biopsy. Fortunately, my hyperplasia was not atypic. I had a TAH June 6th and am ever so glad that I did. I'm back at work and already feel better than before my surgery.

Hyperplasia is a serious condition. Please do all you can to research it and to be certain that you understand the risks of surgery vs. "holding out" and are comfortable with any risks that you may be taking.

Why did I hold out so long? Other family needs (kids first, you know), disruption to my life and my work, hope that someday things would change. If I had to do it all over again, I'd have had surgery years ago. I wasted a lot of time hurting and bleeding that can't get back.

Good luck
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  #4  
Unread 07-18-2001, 06:22 PM
Endometrial Hyperplasia

Hello Basi,

I had atypical complex endometrial hyperplasia. Now this is somewhat different than yours because it is pre-cancerous. However, My doc did try several different remedies before she deemed it necessary to do a hyst.

First, she did an endo biopsy which showed the condition. Then she put me on progesterone to cause the extra lining to shed. It worked. Then she did a D&C to check if the provera worked. everything seemed to be okay but 2 and a half mnths later the atypical hyperplasia was back. Therefore, she suggested a hysterectomy. Her decision was motivated by the cancer issue involved. If yours is normal hyperplasia then the main question would be, How much pain and discomfort are you willing to put up with? And, Is there any concern that this hyperplasia might progress to atypical build up of cells?

This is a major decision you are faced with. Ask your doc tons of questions to determine what course is going to bring you back to a normal healthy and pain free life?

I hope you find the answers you seek and the peace to make a decision you can live with.

Hugs & Prayers,
  #5  
Unread 07-19-2001, 06:26 AM
Endometrial Hyperplasia

Thank you so much for answering. 12 years ago I was diagnosed with hyperplasia after a D&C for heavy prolonged bleeding. Went on Provera and all was fine till I moved and new Dr. took me off provera. Went on and off and finally he left me on it. Had another D&C in 94 after more heavy and long bleeding. Now there seems to be a question of whether or not that hyperplasia was atypical or not. Am trying to get lab report but Dr. retired and I'm having trouble getting it. I have had yearly biopsys since then which have been ok. About 2 years ago after more heavy prolonged bleeding I was put on 20mg. provera daily so I don't have periods but, I have occasional spotting. I thought if I held out for menopause it would all be over, but now I'm told that's not necessarily true but that I'll always be at risk unless I have a hysterectomy. Dr. also wants me to take estrogen to protect my heart and bones, which I thought will put me at higher risk for hyperplasia-cancer. I am 51 now and had been skipping periods before I was put on daily provera which has stopped them alltogether except for occaisional spotting. So much conflicting info and I'm so confused. I had a breast tumor (benign, Thank You God) removed last spring and don't want more surgery. I also had breast hyperplasia which can be caused by provera. I just don't know what to do.
Basi
  #6  
Unread 07-19-2001, 07:26 AM
Me, too, me, too

Dear Basi.

In March of this year, my regular GYN wanted to check out my ovaries and sent me for a transvaginal ultrasound, which showed no problems with ovaries but a uterine lining of 28 mm. I went for a D & C which could not be done (long story) so an endometrial biopsy was done and complex hyperplasia with atypia was diagnosed.

My regular GYN sent me to a gynecological oncologist who said hysterectomy was necessary. I am scheduled for 8/21/01 TAH/BSO. This is on the outside of how long he wanted to wait for surgery.

My understanding is the atypia increases the level of concern which is there with hyperplasia. With complex hyperplasia with atypia, according to the GYN. ONC. I saw, there is a 2 in ten chance of finding cancer at the point of surgery and an about 30% chance of ending up with cancer at some point in time. Odds I prefer not to try to defy.

It sounds like you have been through a lot and it can be rough and frustrating to try to get missing old records....

Best wishes to you.

Susan (a.k.a. Greybraids)
  #7  
Unread 07-20-2001, 06:45 AM
Endometrial Hyperplasia

Dear Susan,
I will pray your surgery goes well.
In a very unexpected turn of events, yesterday I went to neurologist who is treating me for migraines. He works out of the same hospital as dr. who did my D & C in 94 and he got me my lab report on it. It says complex hyperplasia WITHOUT atypia. I go to Gyn in August and will see what he says after he sees lab report. If they had told me I needed a hysterectomy 12 years ago I would have gladly agreed. Also if they had said I needed it any time during the past 12 years when I was having the heavy and prolonged bleeding I would have agreed. But why now when things aren't so bad? Just 20 mg of provera daily (and the weight gain that goes with it) and occaisional spotting. Why did I go through all that? I had a biopsy last month that showed no hyperplasia.
Atypia seems to be the line you don't want to cross over, so I believe you are doing the right thing.
God bless you, Basi
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