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Unread 05-15-2002, 04:39 PM

Hey Alex!

I was just recently diagnosised w/adenmyosis after an MRI. From what I understand this is a disease that is very difficult to diagnosis. MRI & deep biopsy are the only things prior to hysterectomy that can effective diagnosis this condition. (per materials, I've read anyway?

I did have an ablation-helps with bleeding but not with pain associated with this condition. Having my TVH on Friday, May 17. Hope this helps...GOOD LUCK!
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Unread 05-15-2002, 07:03 PM

Neither my doc nor I knew I had adeno until she got in there to unstick everything. I had a tubal ligation 12 years ago and that doc told me about the adhesions and fibroids. I'm still not exactly sure what adeno is.
Unread 05-15-2002, 07:57 PM

Dear Sisters,

I was a perimenopausal person, within medically defined boundaries even!! I knew there was something drastically wrong and was having a hyst come what may. I could tell the doc was of the new school variety that had it been her preference, we would have tried, x, y and z before my hyst. People could (probably rightfully) say I was quick in my decision to have a hyst. Given my mom and sister's history, for me, it was a no-brainer. Adeno was not listed as one of my problems. At my 2 wk. checkup and biopsy results conference, the doc looked at me and said -- without question you made the right decision. Only my experience but doesn't that tell us how much we know about our own bodies? Bye, bye abdominal pain! 17 wks. post op and one happy clam. The road has not been entirely smooth but I wouldn't trade it for anything.
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Unread 05-15-2002, 08:54 PM

Hello Ladies,

Since adeno runs in my family (the reason for my hyster at age 37 and my mom's hyster at age 43) and having done tons of research on it, I can shed a little background for you if it is helpful.

Think of adenomyosis as being like endometriosis. With endometriosis errant endometrial tissue getting flushed out into the abdomen and attaching to structures such as the tubes or abdominal wall, etc.

With adenomyosis the errant tissue burrows back down into the muscle layers of the uterus itself. In fact, if you were to consult some older medical texts adenomyosis used to be referred to as "endometriosis interna".

Since the errant tissue is the same as the lining of the uterus that is shed when we have our periods, it responds to our monthly hormone fluctuations the same way as the uterine lining does, meaning that it will swell as the lining builds up and then it will break down when we menstruate.

The problems arise from the fact that this swelling and bleeding happens while this tissue is trapped between layers of uterine muscle, causing pain and cramping. The uterus gets stretched out and "boggy" or "squishy" instead of being a firm mass of muscle. Since the muscle fibers are separated and interrupted by these pockets of endometrial tissue the uterus cannot work as efficiently to expel the blood we pass when we have our periods, leading to prolonged periods, pain and even passing blood clots if blood has been sitting in one place in the uterus where the contractions aren't as strong as they used to be because of this errant tissue screwing up the muscle fibers.

Current thinking is that women who have had children/been pregnant may be at higher risk for adenomyosis as a result of the implantation of the placenta into the uterine wall. Another theory explores whether women who have had "instrumentation" in the uterus might be at higher risk for the condition (D&Cs, biopsies, etc.).

No one can really say why we get adenomyosis at this point and it appears that at least at present there is no good therapy. Some women may find some relief by having their cycles suppressed hormonally but the only definitive treatment is hysterectomy.
Unread 05-15-2002, 09:06 PM

Wow, Jewel, That is by far, the best explanation I ever saw to describe Adenomyosis!!! I suffered with adeno after the birth of my daughter via c-section. While they 'say' there is no causal connection, the incidence of women suffering from adenomyosis who have had hysteroscopies, D & C's and C-Sections is remarkably high. I also suffered from depression and IBS with the adeno because my prostaglandin levels were so whacky. Torri, it is true that the ablation MAY help with the bleeding and a biopsy of the uterus MAY help diagnose adeno (IF they happen to biopsy the exact spot where the adeno is located. An MRI may show an enlarged or boggy uterus but the only way to definitively diagnose adeno, is after a pathology report has been done following a hysterectomy.

Lots of luck to you on Friday!!! Please let us know how everything turns out.. (I am a hostess on the post-op Boards!)


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