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Adenomyosis question Adenomyosis question

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Unread 06-15-2005, 06:20 PM
Adenomyosis question

This is kinda late in the game to be asking stupid questions, but here goes...

Now when they did my US they found nothing unusual, when they did my lap, they said it looked unhealthy and had to go. Now I have a swollen belly 99% of the time, feel weighted by the uterus and my periods are down to one day. What would happen if I didn't have it done? Could it be cancerous? Is that what they mean by unhealthy? It doesn't seem to be growing anything, no follicles, no cysts just boggy uterus. So what would happen if I didn't have it done?

I will have it done - just playing worst case scenarios in my mind and convincing myself that it is necessary...

Also having a bad case of the grouchies, my hair is even bothering because its on my head! (Hair is going at the end of next week to locks for love) but that is besides the point, I just can't stand my skin!
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Unread 06-15-2005, 06:30 PM
Adenomyosis question

I had adeno. and my symptoms were pain and bleeding. I was diagnosed a year before I had the surgery. I decided to wait and see what happened. My pain increased in intensity and frequency. The beeding became heavier and began lasting longer. My uterus was also boggy and was enlarged. The Dr. said it would probably have gotten larger if I waited any longer. He did say it was not cancerous and I didn't have to do anything if I didn't want to, it was all about quality of life. I am so glad I had the surgery. I feel so much better. Surgery was 4/6. If I were you, I would talk to the Dr. again. Ask him the questions you asked here. He knows the specifics of your condition. There are some less invasive procedures that may help if you wanted to try something before going to surgery. Good luck it is not an easy decision to make.
Unread 06-15-2005, 06:31 PM
Adenomyosis question


I am not sure what would happen. I hear many people say with their adeno they bleed constantly, aunt flo is very very clotty, heavy, and they feel tired and drained from the anemia...not to mention the swollen size of the uterus when they do have their hyster done....

I consider myself lucky mine was caught before it got to those points.

I was told my "home for Aunt Flo" was boggy as well and what my doc said to me was that it should be "firm" and it isn't. That is what they mean by "boggy".

Can it be cancerous... I guess there is a chance there could be precancerous cells there being as those can not be seen with out a microscope. But that is what the lab is for after they remove it.

Not sure that this is any help...

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Unread 06-15-2005, 06:43 PM
Adenomyosis question

I had adeno, but didn't know that until the pathology came back. My periods were heavy and long and painful. I was also very anemic and had lots of non-specific pain in the pelvic region which has gone since I had the LAVH 05.06.2005.

The pathology also showed my uterus had grown in the last few months- an ultrasound 8 months ago said it was 11 cm, and it was 15cm when they took it out.

I'm really glad I had this done- six weeks later I'm beginning to feel like a new woman.

Good luck.
Unread 06-15-2005, 09:13 PM
Adenomyosis question

I had adeno and didn't know the specific Dx until I read the pathology report. I knew I was literally hemorraging and I had fibroids growing like wildfire! My OBG said the lining of my uterus had a potentially, precancerous change going on, with adeno. No doubt! There is chronic inflamation with adeno and you can't get a good biopsy with an overgrown uterus, filled with nooks and crannies and dead ends. Where the blood can't even escape, anything could start to grow!
Unread 06-15-2005, 09:35 PM
Adenomyosis question

I spoke to my Dr. and a good friend of mine who is also an OB and the only definative treatment for adenomyosis is a hysterectomy (ablation, etc. doesn't work because the tissue is actually inside your muscle). That said, I think it is, like a previous post said, a quality of life thing for most people. You'll just have to decide how much you are willing to put up with.

Good luck with your decision.

Unread 06-15-2005, 09:42 PM
Adenomyosis question

I also didn't know I had adeno until I read the pathology report. I thought the fibroids were causing all of my problems - I believe my DR thought the same thing. The first 3 days of my period were floods and bad cramps, then it would taper off quickly. The last few months before my hyst, I started occasionally passing clots between periods. No pain associcated with them. I don't know if it was the adeno, fibroids or a combination of both causing the problems.
Unread 06-16-2005, 11:07 AM
Adenomyosis question

Hi Roo,
I have adeno and finally decided to get a hyst after debating for a year. My uterus is so swollen now, nothing fits in the waist anymore and it is just getting bigger and bigger every month. Unlike you, I do bleed heavy every month and have major pain. Right now, I am in the middle of my cycle, period not due for another 2 weeks and my back is killing me from the gigantic uterus pressing against it. There just doesn't seem to be anymore room in there! I have no signs of fibroids, cysts or anything else growing, except a very large boggy uterus.

I think if you didn't have it done, you would get larger and larger as this is a progressive disease and nothing can cure it besides a hyst. As far as cancer goes, I have worry about that too because it seems there is a lot of uterus in there for it to grow on. But, I am trying to stay positive and think about how good I will feel when it is all over.

I am having an LSH, keeping my cervix and ovaries since there is nothing wrong with those. I questioned my doctor doing a LSH with such a large uterus and she said that it can be done, it will just take longer to get it all out through that special tool they use.

I hope your surgery goes well, wishing you the best!
~Sea Lover
Unread 06-16-2005, 01:52 PM
Adenomyosis question

Thanks for the replys . . .I too am tired of the bloating, cramps and that back ache I was complaining about last night! My Dr. is just so used to "This is what you do" that she doesn't explain very well that "if you don't this is what could happen" I think I would get it done if it just cured the exhaustion problem I'm having...I'm soo tired of being sooo tired....Just looking for someone to give me a good swift kick in the butt and just do it because it has to be done...

Thanks for your input...
Unread 06-17-2005, 07:39 AM
adno and light period

I also have a very light almost spotty 2 day period, but near dibilitating cramps for usually 3 to 4 days. I was just recently diagnosed through a lap, which now through this site I find out that that means it is pretty far progressed. One thing my doc comented on was that he believes the light period could be really making things worse as he thinks most of the lining is now moving into the uterine walls, these light periods only started about 4 months ago, before that where normal to heavy. We also believe that I have had adno for a while, but the pain did not get bad until after I went off B/C 2.5 months ago. He felt that was controling the pain for me. I was contemplating putting off the hyst until my daughter, who will be 2 yrs old just 2 weeks prior to surgery, was older. After much research and reading of other ladies experience I am sure that now is right. My doc wants to do a LAVH as my uterus right now is olny about 2x normal size. Also right now I only have pain around period time and also for about a day after intercourse. It's good to know that someone else has the same not normal symptom of adno. I am also thankful that my doc and the second opinion doc recognized this for what it was even though I am not in the "Normal" age range for this to happen. Thanks for listening and good luck to all of us. Angela

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