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Has anyone else experienced this with Adenomyosis?
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06-28-2011, 04:25 PM
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HysterSister
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Posts: 42
Hysterectomy: July 14th, 2011
Surgery Type: DvH
Ovaries: Kept 1 or both
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Has anyone else experienced this with Adenomyosis?
Hello all! So glad I found this site!
I have been having pain for over a year now. During the last year my pain has become stronger and stronger. Now I am very uncomfortable or in pain everyday. My doctor said it's Adenomyosis. My uterus is three times as large and three times as thick as it should be. When I read about Adenomyosis online the symptoms only list increased pain during a cycle but I have pain all the time. Has anyone else experienced this?
I'm scheduled for a hysterectomy on July 14th, in my heart I feel that this is the right thing and I'm so excited to be pain free. However, my biggest fear is that it's not Adenomyosis and I will have the hysterectomy and still have pain. Please share your experiences with Adenomyosis.
Thank you!
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06-28-2011, 05:34 PM
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HysterSister
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Posts: 118
Hysterectomy: March 21st, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
Hi LoveChocolate (me too! on chocolate and adeno),
I hear you, I have Adeno, among other things, but it is the constant pain of the Adeno that finally drove me over the edge, and into the Dr's office to seek help.
I take ibuprofen almost daily. It was a long slow process to get me to where I am now, 10 years of difficult Peri-Menopause symptoms culminated in this.
I kept thinking, if I can just wait it out, surely I'll go into menopause, and this will all stop!
I finally scheduled a DaVinci Hyst for 9/2/11. It will take me that long to save up enough time off work to do it, otherwise I'd do it A LOT sooner!
I finally just reached the point where I am ready.
I too have moments of doubt and of course there's a small risk of what you mentioned. I'd love to hear from others with adeno who are now post hyst.
From what I have read, adenomyosis can be a mysterious thing. I think for years when they thought I had a fundus fibroid in the wall of my uterus, it was really adeno, which can masquerade as a fibroid.
Only time will tell for both of us, but I feel confident I am making the right choice and a step toward a healthier pain-free life.
Wishing you a successful hyst, and a healthy and speedy recovery!
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06-29-2011, 09:41 AM
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HysterSister
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Posts: 170
Hysterectomy: July 26th, 2011
Surgery Type: LSH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
How was your 2 adenos dignosed?
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06-29-2011, 01:39 PM
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HysterSister
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Posts: 64
Hysterectomy: June 16th, 2011
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Has anyone else experienced this with Adenomyosis?
Yes I Had Ando And Endo And I Hurt All The Time It was awful I had my complete hysterectomy and overies taken out on june 16th and that pain is gone I had A Tah best thing i ever did for my pain !!!!
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06-29-2011, 01:49 PM
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HysterSister
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Posts: 170
Hysterectomy: July 26th, 2011
Surgery Type: LSH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
I don't understand how everyone else can be diagnosed and I can't. Is there something wrong with my ob? He says he can only tell after the fact and just tells me to decide what I want him to do, but isn't he the Dr.? So frustrating.
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06-29-2011, 03:53 PM
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HysterSister
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Posts: 42
Hysterectomy: July 14th, 2011
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
Thanks for your input! I do feel much better knowing that others have pain all the time. I hope we all get relief soon!!!
My doctor also told me that Adeno can only be confirmed after hyster, however, due to my issues he is very confident it's Adeno.
Here's my history
Heavy periods / clotting for several years
Pain started Jan 2010
Ultrasound showed uterus 3 times as large as it should be and 3 times as thick as it should be (big indicator of adeno)
D&C September 2010 to remove fibroids and check for cancer
Colonoscopy to rule out colon issue October 2010
Still having pain / heavy periods
January 2011 periods every 14 to 21 days
Pain getting worse
Laparoscopy (sp?) to remove endo May 2011
Ablatian to help heavy periods May 2011
Still having pain!
Started my period a week and a half after the Ablatian
Old doc said I must have adeno but wanted me to wait a year before hysterectomy.
Found new doc. Reviewed all of my charts/pictures and did exam. He also feels confident that it's adno. The enlarged tender uterus and frequent heavy periods are the main indicators. He said that I could wait a year but the pain would not subside. I am at the end of my rope!!! So, we scheduled the dvH!!!
It's hard to feel confident when the diagnosis can't be confirmed until after the surgery. I do feel that this is the right decision for me though. Good luck with your decision!!
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06-29-2011, 04:40 PM
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HysterSister
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Posts: 64
Hysterectomy: June 16th, 2011
Surgery Type: TAH/SAH
Ovaries: Removed both
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Re: Has anyone else experienced this with Adenomyosis?
Yes it is the right choice trust me that part of my pain is gone now I recovering from my tah and the pain from surgery I can't wait till this part is over and I will be done your symptoms are the same has mine but I also had endo very bad good luck to you !!!
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06-30-2011, 09:39 PM
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HysterSister
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Posts: 118
Hysterectomy: March 21st, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
BBE123,
To answer your question on how I got my Dx of Adeno...
Just as LoveChocolate said, the only 100% positive Dx of adeno is AFTER the hyst, via the pathology report on uterine tissues.
That being said, I do think a good doc and the right tests can get a Dx you and doc feel confident with.
Mine was by MRI along with my laundry list of symptoms, which are very similar to those listed by LoveChocolate.
Also cervical stenosis, tender uterus, etc.
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06-30-2011, 10:35 PM
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HysterSister
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Posts: 170
Hysterectomy: July 26th, 2011
Surgery Type: LSH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
I am going to have an mri next Tues. Pray they see what is causing the problem. I'll let you know how it goes.
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06-30-2011, 11:10 PM
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HysterSister
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Posts: 118
Hysterectomy: March 21st, 2012
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: Has anyone else experienced this with Adenomyosis?
MRI is a better view for adeno.
Will hold you in my thoughts and prayers...
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