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adenomyosis??? adenomyosis???

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Unread 03-27-2001, 08:17 PM

My name is Mindy and I was diagnosed with adenomyosis last year. I have been on BC and provera. Nothing has seemed to regulate me and certainly nothing to stop the pain. I am so tired of being in pain all the time and not being able to function. Ive just had it! I am 27 but have 2 sons and my child bearing years are over. I have decided hysterectomy is my only option at this point. My pain in inside the uterus unlike endo. So removing the uterus should cure my problem.
I was wondering if anybody else has been diagnosed with adeno??? I am going back to the doctor the end of april-hopefully to schedule surgery!
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Unread 03-28-2001, 12:11 PM
I'm an ENDO sufferer...not an adeno sufferer,but...

I've always been told by doctors and read it in medical literature that the only way to know for certain that you have adenomyosis is to have your uterus removed, a slide-section removed for pathology and examined. Just like with endo, they don't know until they cut you open and take a peek for sure if you have it -- with adeno, they don't know for SURE without removing your uterus and examining it. Symptoms may point to it, but nothing is for certain. I have a question - have you had a diagnostic laparascopy?

But, the short answer is, YES if you have adeno, and they remove your uterus, it should help.

<<<<<<<discuss at length with your doctor>>>>>>>
Unread 03-28-2001, 12:38 PM

I was suspected to have adeno prior to my hyst. I had a lap done and this was where the doctor found my uterus to be boggy and thus his suspicion. After my hyst it was determined, through pathology of the uterus, that I had multi-focal adeno. A good website to visit for adeno is

You can visit the message boards or any of the webpage links there. You will find a lot of good info, it was through that website, that I found hystersisters.
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Unread 03-28-2001, 03:03 PM

I also have adenomyosis. It is very painful and the bleeding has become severe for me. I also have endo and previous ovarian cysts. however, I feel most of my problems are the adenomyosis. I am schedlued for my hyst on 5/23/01. I am 39 and my kids are teenager so child bearing is not a consideration for me. I just want to stop the pain and endless bleeding that has taken over my life.

I hope you are able to have your surgery soon as you are able. It is a tough decision at first but when you know the pain is going to be gone after it makes it easier to decide, at least it was for me.

Unread 03-28-2001, 05:16 PM
Thank You All!

Yes I had lap. surgery last summer and my doc said that he definitely thinks its adeno. He said my uterus looks like a sponge and is the size of a 12-14 week pregnancy. My doc told me the only way to be sure is to take it out and send it to the lab. I did have several endometrium cysts that he removed. That scares me. Im really afraid hes going to get in there and find endo. Then what? Will I have gone through surgery for nothing? I really see no way my uterus is doing my health any good at all. I have been pondering this decision for the last year. It has been a tough one. I do feel like I am losing a part of me but I also know I cant spend another year hurting and bleeding all the time.
Thanks so much for your replys!
Take care-
Unread 03-28-2001, 05:54 PM
My experience with endo/adeno

Hi Mindy,
I just got back from my six-week check and my doctor (who is the head of ob/gyn at my hospital) and I had a long talk about adeno. He told me that currently the only treatment that he knows of for an adenomyotic uterus is to remove it (Mine was twice the normal size and very boggy/spongy, squashing my bladder and giving me great lower back pain)

I have had four lap/laser surgeries for endo, three surgical menopauses, four d and c's and finally had a TAH. I left my ovaries (I cannot take HRT for medical reasons) and knew going in that my endo may recur, but the adeno is gone. Mine was all infiltrated all thru the uterine wall.

My doc has done a lot of research on endo (due to yours truly) and I feel that I made the best decision for me, after being informed. Everybody's different, and all medical cases are different. My advice is to get as much info as you can and be informed before you make the final decision, that way you know what is best for you. Adrite and RobinC have given you some great links.

Unread 03-28-2001, 09:49 PM
surprise adeno

Hi, Mindy,
For about three years, my doctors and I thought, from an ultrasound, that I had fibroids. Lo and behold, when my uterus was examined after it came out, it wasn't fibroids at all. It was adeno. As far as I know, the only way to get rid of adeno is to get rid of the uterus, since adeno is endometrial tissue inside the uterine walls. I am very lucky to have no endo so my doctor is confident my problems will be over. In fact, since me uterus was twice it's normal size, my bladder and bowel function have improved already; nothing is being squished (is that the correct medical term, you guys?) anymore!

Keep reading, posting and talking everything over with your doctor.

My very best to you...

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