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Adenomyosis - anyone else "diagnosed" with this? Adenomyosis - anyone else "diagnosed" with this?

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  #1  
Unread 10-06-2011, 09:26 AM
Adenomyosis - anyone else "diagnosed" with this?

My dr thinks this is what is causing all of my issues (SUPER heavy bleeding, crazy irregular cycles, debilitating cramps, swollen uterus - and belly!), and we've decided that a hysterectomy is the best solution (after discussing all the possible alternatives). The diagnosis can't be made until AFTER surgery though as they have to see the uterine lining to be sure. I have NO fibroids or polyps...just a history of painful, debilitating periods. I'm exhausted, bloated, and in pain constantly....and I'm praying that this surgery is the right decision. Has anyone else been diagnosed with this, and was a hysterectomy the end result? What was your recovery time? Desperate for more information!!
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  #2  
Unread 10-06-2011, 09:35 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

I'm pre-op, but highly suspected of adenomyosis as well. Same symptoms as you, and extra-thick uterine lining. Looking forward to hearing what others have to say.
  #3  
Unread 10-06-2011, 11:05 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

I was suffering from the same symptoms as you but I also had cysts on both ovaries. After suffering for years with the surprise periods, heavy bleeding, cramps, you name it I opted to have the surgery. At my 2 week follow up I was advised of the Adenomyosis. 9 weeks post op and can finally say I'm glad I went through with it. Good luck.

Tracy
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  #4  
Unread 10-06-2011, 11:16 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

I may have it too... I am waiting for my surgery date...
I have all the same symptoms.... the cramps are the worst part for me.
They never go away... I just have different degrees of pain.
Right now I have been place on a hormone to control the periods and bleeding. I was not suppose to have a period anymore. I was to be on the hormones till surgery so I would not bleed and keep my iron up... Well I started this week and it is a killer.
I see my Doc on Wed. so I am hoping that I have a date then.
All I know is I am looking forward to being pain free and having my energy back...
BTW what I have read the only cure if you do have it is surgery...
Good luck... we may have dates that are close..
  #5  
Unread 10-06-2011, 11:25 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

Luv2Hum - I did the hormones to stop my period, too. Still came right on schedule. Grr... I wonder if that's typical of adeno sufferers.

Do you guys ever feel like you're walking around with a bowling ball in your belly?
  #6  
Unread 10-06-2011, 11:43 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

Oh yes... even with the cycle I still do... I lay on my tummy to sleep and there is a ball inside of me.
No one but someone who is going thru this would understand how the cramps are. One hour I can feel just a little cramped and can make the day, the next hour I feel like I can not even walk...

Are you always cramped too?

Some days I can not wear my favorite pants because they are too tight and hurt.. I feel like I am always on pms bloat and emotional roller coaster...

I wonder if break thru bleeding is normal for this too...
I was reading the drug I am on and it said I should not have any break thru bleeding for the first 6 months.. made it 6 weeks.

all I can say is I am so ready for this to be over...
  #7  
Unread 10-06-2011, 11:53 AM
Re: Adenomyosis - anyone else "diagnosed" with this?

The "bowling ball" belly is a PERFECT description! I did a search on the posts about Adenomyosis here...lots of great information! I've been spotting constantly for the past 4 months....and that's WITH being on BC to help regulate the flow. Prior to that, I was having a HEAVY HEAVY flow every other week, with heavy spotting on the "off" weeks. My periods have gotten consistently worse every year since my late twenties....and I thought I was just "getting old" and that this was normal!!! SOOOO glad to know it's NOT, and that I'm NOT being a whiny girl!! I've realized, after reading the posts, that things I thought were just MY 'quirks' are actually symptoms....the sharp rectal pains, which I thought were maybe just super painful weird gas issues; the increasingly swollen belly, which I thought was from doing crunches the wrong way (until I had to go up two sizes in clothes!); the fatigue, the constant cramping and back pain, blacking out due to blood loss and pain.... I'm so very thankful for this site...so much great information - I feel like crying with relief knowing that others "get it" when it comes to this issue, and that there IS a support system in place!!
  #8  
Unread 10-06-2011, 12:12 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

Oh the blacking out... Man, that's only happened a couple times for me. Sharp rectal pain - did not know that was a symptom; I've had that for eons. I swear I learn something new each time I come here!
  #9  
Unread 10-06-2011, 12:40 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

It brings tears to my eyes knowing that you gals understand that it is not all in my head....
If I had a broke arm or some other thing people would never question that I feel bad and in pain..
I tell them it is a woman issue and the pain is bad and they look at me like I should just suck it up and take it.
kinda gets me mad...
But then I wonder until I felt it all... the cramps into the hips... the passing out from blood loss and yes even the rectal pain and feeling like your uterus is falling out from the weight... would I have been so sympathetic?
It is kind of losing a parent. until you do, you really do not understand...

I am so pleased I found this site. It has really helped me to be able to say "I do not feel well today" with no guilt and to know that it really is not all in my head....

Thanks to all of you for being there....
  #10  
Unread 10-06-2011, 12:43 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

Luv - I am not always cramped per se, but generally feel pressure in my abdomen. Just a heaviness. I tend to get cramping on my sides, sharp, when AF is around. Don't know if that's adeno or just weirdness....
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