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Adenomyosis - hysterectomy recommended (2007) Adenomyosis - hysterectomy recommended (2007)

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  #1  
Unread 01-01-2007, 07:39 PM
Adenomyosis - hysterectomy recommended (2007)

I just joined this forum today in search of answers as we all are I imagine.
I was diagnosed with Adenomyosis about 2 years ago, as I kept on having heavy and painful periods. My gyn told me that I would soon be in menopause so to just wait (I was 39 years old at the time)!!!!!
The pain gradually got more frequent, it's bearable but very uncomforable, about 3 out of 4 weeks and still heavy periods. I changed gyn and went to a new one who scheduled a pelvic IRM. Results back last week with adenomyosis spreading and now in several parts of the Uterus, she is recommending vaginal hysterectomy, leaving ovaries and cervix in place.
I am terrified at the idea, and after reading what to expect afterwards I really don't know if I should be doing this at all! I could cope a few more years like this, can't I?
I have 3 children, 9 yr, 7yr and 6yr old and a very supportive husband so I would get lots of help.
Could anyone give me some advice on what to do?
Thanks for anyone's help.....
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  #2  
Unread 01-01-2007, 07:55 PM
Adenomyosis - hysterectomy recommended (2007)

Hi Beevy,

Only you know how much you can take. I kept putting off my hyst waiting for menopause to start and finally at 49 years old (after testing and still not close to menopause) I had my hysterectomy. By this time, I had reached the unbearable point and was losing the anemia battle. My entire uterus was "mushy" {Dr's term). I looked at all of the posible problems and decided that while I might be trading one set of problems for another set (which I did) that it could not be much worse.

If you aren't sure, why not get some additional opinions from other Dr's? They could look at your unique situation and give you their best advice.

If after reading about what you can expect afterwards has made you have second thoughts, then maybe you still have some time to wait for natural menopause.....

While the women here can share their personal situations and outcomes ( everyone is unique), it is wise to listen to the advice of your Dr's.

If you should decide on a hysterectomy, we will be here to help you prepare and recover.

,
Kay
  #3  
Unread 01-02-2007, 01:56 AM
Adenomyosis - hysterectomy recommended (2007)

Hi, Beevy. I too have adenomyosis and it has gotten quite severe. I have waited three years to decide about having a hysterectomy. The pain is truly, truly unbearable and (as my doctor likes to say) Percocet is not a plan. My anemia is bad; my ferritin levels are too low; I live on iron pills, pain killers, and hot packs; I plan my life around the times I will be bleeding; and something has to give. My uterus is very boggy, meaning the bleeding each month will just get worse as time goes on. The uterus just can't contract like it should. So, on March 21, I'll visit the castle.

As far as I know, your adeno will never get any better. It does have the potential to get worse. I'd rather do the surgery while I'm 37 (well, 38 by then) than wait until I'm any older.

If you aren't taking iron pills and pain killers yet, you can wait to see if you can "hold out" until menospause. Whatever you do, take your time in deciding and make the decision that is right for you.
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  #4  
Unread 01-02-2007, 06:46 AM
Adenomyosis - hysterectomy recommended (2007)

Hi Beevy. My gyn states that I have adeno as well. I am in my mid 40's, and our plan was to monitor my cycles & maybe I won't need the hyst(hoping menopause will kick in)..well, it will be 5 years, now that it is 2007...and I am SO READY for surgery. I also have heavy bleeding, but for about 3-4 days, then it is light for approx 20 days. My main issue is pain/uterine cramping. I do not take pain medication other than ibuprofen, since most narcotics would just make me drowsy and/or fall asleep, plus I have to work. But, having horrific cramps seems to be a frequent occurrence for me whether I have my period or not. But, talk it over with your gyn, speak to your friends and as Kay said, maybe get a 2nd opinion. If you think you can handle a few more years, well, only you would know. Best of luck to you and take care.

Lizzie
  #5  
Unread 01-02-2007, 07:31 AM
Thanks!

Thanks to all of you for responding so rapidly. This site is really impressive! I have never seen such support from people I don't even know!
My gut feeling is I should hang out a while longer before going for the H, when I read what is happening to many of you, I am realizing that I am not that bad yet and perhaps will be able to keep going until the menopause without undergoing any surgery.
Without any of your comments I would probably have followed the insistent advice of my ob/gyn and had the H. done and I think it would have been a big mistake now because I am not ready.
Thanks again everyone and I will return to the forum again if I have to have it done in the future! Good luck to you all,
  #6  
Unread 06-05-2008, 07:02 PM
Adenomyosis - hysterectomy recommended (2007)

What is the "castle"
  #7  
Unread 06-05-2008, 07:10 PM
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What do you mean by "castle"?
  #8  
Unread 06-05-2008, 07:30 PM
Adenomyosis - hysterectomy recommended (2007)

Castle=Hospital
  #9  
Unread 06-05-2008, 07:36 PM
Adenomyosis - hysterectomy recommended (2007)

The hospital/castle is the Greenwich hospital. I still have not had a hys. am holding off as it depends on the month. You just had yours done in April, how are you feeling? Obviously no pain! So it was worth it for you?
  #10  
Unread 06-06-2008, 08:34 AM
Adenomyosis - hysterectomy recommended (2007)

I'm officially 6 weeks post op and I have zero regrets about having it done. I don't have my 6 week checkup until next week though so I haven't gotten my official all clear yet.

My tummy is still a little tender but nothing much. I have been lucky that I didn't have any serious complications during my recovery and once I got out of that germy hospital I started bouncing back fairly quickly. I still have to watch my activity level but I am pretty much back to all of my usual activities except for the ones that require lifting more than 10 pounds and vacuuming. I don't get tired near as quickly now as I did even a few weeks ago and I haven't taken anything for pain in over a week.

Gone are the terrible cramps, the daily pelvic and lower back pain, the heavy bleeding/gushing and the massive sized clots(we're talking they were almost as big as the palm of my hand-YUCK!). No more not knowing when my period is going to come and no more having to be a recluse for fear of having an accident in public.

For me personally it has all been worth it, it is truly the best thing I have ever done for myself.

Good luck to you in whatever you decide to do!!!
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