Anyone ever heard of Adenomyosis?

Light_in_the_tunnel · 12-12-2002, 08:17 PM

After having felt "something" during my last 2 pelvic exams, my GYN sent me for a CT of the pelvis. Along with my friendly ovarian cyst, I found out that my uterus is "enlarged" without any signs of fibriods or tumor of any kind, roughly 9 - 10 weeks size. The GYN thinks that this is caused by "Adenomyosis", or endometriosis involving the uterine wall. However, I don't really have any sympoms of adenomyosis, ie heavy (er) periods, more severe cramping than I have always had. My symptoms are a sort of heaviness in my lower abdomen, urinary frequency and lower back pain.

I was wondering if anyone else had been diagnosed with this or has been told they have an "enlarged uterus" without fibriods.

Thanks,
Jeni

JaneR · 12-12-2002, 08:38 PM

I must admit I'd never heard of it so I looked it up and my book does just give the symptoms of heavy periods and severe cramping during periods!! Are you going to have a lap? I think probably that is the only way they will actually find out what it is that is causing your problems.

Anyway, good luck and let us know how you get on.

Light_in_the_tunnel · 12-13-2002, 10:47 AM

Right now she is just going to "watch it" for a few more months. She wants me to keep a menstrual journal -- whatever that means -- and to see me again in 4 months. I have seen a couple places online that even hormonal imbalances can cause enlargement of the uterus. That would be me -- one big hormonal imbalance!

Personally, I wish she would just take it out. Not like I am using it for anything anyway and they could clip my gallbladder and tack up my bladder while they are in there!

On the plus side, I only had one cyst on my left ovary though, which is an improvement from a year ago.

Jeni

Kate721 · 12-14-2002, 04:46 AM

Jeni, i had my uterus removed in April and the surgeon said that she could feel it slightly enlarged so she agreed to the surgery I was pushing for.
Unlike yours my did a scary and rapid advancement over a period of about 3-4 months and I finally came to the point of disability.
And when I went to find a doctor to help me with my torturous problems it took 5 doctors and 6 months to get the sugery I already knew I needed.
The gynecologist swore up and down that I had nothing more than a little adenomysis.
The surgery ran 4 1/2 hours.
The pathology report said that I had extensive adenomyosis, endometriosis, cysts on the left ovary and the ovary attached to the colon by dense stage 4 adhesions and the colon was actually around the ovary(yes, you bet i troubled bowels too.
and both the ovary and the colon were attached to the musculature of the pelvic girdle by adhesions most probably from the endometriosis.
So, the bets i can tell you is this: Keep on top onf that adenomyosis business. All these disorders seem to run together.
I already have the hypertension that fits the syndromes and I now have been put on an antidiabetic medication to address a problem with the pancreas over producing insulin.
Aand the story goes on............but I'll stop here so you can digest.
But again, I'd like to say, keep on top of it and don't let things go too long.
Oh and by the way, those adhesions? They can not be sen on the standard imaging test. I had those done. both internal and external.
Nuthin!
It actually takes a laproscopic procedure to give an accounting of what is or is not in your pelvis.
Take Care,
Kate

Light_in_the_tunnel · 12-18-2002, 07:45 PM

Kate,

Thanks for your reply! I hope that things are going better for you sans Uterus. My main concern is that it is not adenomyosis, but endometrial hyperplasia. Given my 25 year history of untreated PCOS, and my mother's hysterectomy at the age of 28 for "some kind of pre-cancerous stuff" the prospect of endometrial cancer scares the crap out of me!

I called my gyn today to tell her that I don't want to wait 4 months to do anything, I want to repeat the ultrasound. I had one a year ago and it didn't show anything at all with my uterus. So, we would have something concrete to compare it to. I got a copy of the CT report (I am an ICU nurse myself and we are funny that way...) The radiologist recommended an ultrasound to correlate his impression that the "the uterus is enlarged and somewhat inhomogeneous and there could be some prominence of the endometrial canal." Also, he stated that there is "No significant by CT size criteria lymphadenopathy" which bothers me... I mean it should be as simple as is there adenopathy or isn't there.

Anyway, I am rambling... just a little more worried after seeing the report myself rather than having it interpreted for me.

Jeni