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Unread 02-28-2002, 10:00 AM

Hey ladies!
I had a quick question about adenomyosis. It seems that my symptoms of pain, pulling, and that "bowling ball" feeling of heaviness get worse at night. Have any of you with andeomyosis experienced this? I am having to take a pain pill almost every night! I also hurt when I am on my feet long periods of time, like at work in the ER. Can some of you share your symptoms with me? Thanks so much for all the support!!

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Unread 02-28-2002, 10:17 AM

I have these symptoms, but I do not know if I have adenomyosis. I have endometriosis, and doctor said if I have adeno we would find out after hyst once the pathology report is back, she said otherwise it is impossible to diagnose any other way.
Also, there is a chance that your veins in pelvic area are enlarged. There is an option for that today, it is called embolization and it is non-invasive. I had it done and it helped a little, but my doc said she sent several other patients to have it done and they all felt relief of symptoms. If you are interested in knowing more about it email me at [email protected] and I will send you all information I have.
Unread 02-28-2002, 10:26 AM

this is too weird.. I was just going to post the same exact thing.. I am having horrible nights... the pain gets so bad within minutes of getting into bed, even on the rare day that I don't have any pain... I try not to take my pain meds.. I HATE taking medicine.. it seems all I do lately is pop pills.. gyn gave me tylenol with codiene.. and when that didn't do anything he gave me percoset and I haven't yet taken it cuz I am afraid of the stuff... pharmasist warned me to 'be careful taking these" geeze... I also am having anxiety, panic attack during the night... I wake up suddenly and jump out of bed...( could only do this during a panic attack cuz otherwise I have to take a deep breath and get up slowly due to the pain)... my hysterecomy is scheduled for april 23 and the other night I had a dream that the dr.'s office called and said I could get it done sooner... oh I only wish.. I don't know how much longer I can go on like this ... whenver I take a pill, the morning is SLOW going....what are you taking for pain???
hang in there...
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Unread 02-28-2002, 10:45 AM

You're right on target with the symptoms your having. After working and being on my feet all day, I would experience the same type of symptoms. There were nights, all I could do was crash on the couch and not move. I felt so horrible. PMS and periods were a nightmare. Until I found out it was adenomyosis, I was really living the guilt trip of not doing the usual household "duties" and taking care of my family.
After I read up on adenomyosis and was officially diagnosed, I didn't have a clue what was happening. My TAH was 12/7 and I haven't regretted it at all.

Healing s and blessings to you!
Unread 02-28-2002, 12:26 PM

Kcrohn, we are surgery sisters! (Thirteen days and counting....)

I got this tingle reading about your "heavy bowling ball" feeling. That's *exactly* how I feel before I get my period. I get some cramps, and they don't hurt that much, but they just suck the life right out of me because they feel so heavy!! I never heard anyone else talk about it that way before.

My gyn suspects adeno; I guess I'll find out after the surgery.

Good luck to you!

Unread 02-28-2002, 01:14 PM

Does any one know if adenomyosis can be diagnosed any other way but after hysterectomy? My doc says it can't.
Unread 02-28-2002, 01:28 PM

Here's another adeno sister! Prior to surgery I didn't know adenomyosis even existed. What I did know is what everyone of you have expressed as symptoms. Failure as a wife/mother/chief cook and bottle washer and working woman. I had anemia so I thought everything was caused by that. I was relieved (I guess) when I got the biopsy back with the adeno diagnosis and found out my uterus weighed 210 grams(?) and talked to the doc. Her direct quote to me was - you absolutely made the right decision. I'm with Janie. My surgery was 1/14 and I haven't felt this good since I was pre-pubescent! Smile ladies - you're about to feel really, really great! You might want to do a search w/in Hystersisters for Adenomyosis -- there are some really good articles there. Best wishes to you all.
Unread 02-28-2002, 01:34 PM


I read somewhere recently that there are various forms of "scans" they can do but the only definitive way is with biopsying tissue.
Unread 02-28-2002, 02:15 PM

Oh, my gosh I know exactly how you feel!! And the bloated feeling has continued to get worse over the last few years. I know that I will always feel worse at night, especially immediately following dinner (small meals help a tiny bit)......sometimes exercise seems to help...I am fed up and will have the big H on the 28th of was an easy decision for kids are teenagers and I am soooo over bleeding continually. I will be 41 and free of periods! I hope that you feel better.....try smaller meals and walking a bit in the helped me. (by the way, can't adenomyosis be diagnosed using MRI...I think that it is just expensive)
Unread 02-28-2002, 02:18 PM

You guys are awesome!! It is so cool to know that I am not the only feeling these things, and that they are not all "in my head!" Thankyou so much for all the info...there is a great big silly grin on my face because all of you shared your experiences with me! Keep the posts coming!!
As far as diagnosis without microscopic examination, there is no absolutely definitive test for adenomyosis. However, as has already been mentioned, CAT scans and MRI's sometimes pick up the enlarged uterus. My MD could feel mine, and said on Ultrasound that it was enlarged. Combined with my symptoms, he made the diagnosis. Guess we will know for sure after I am a punctered princess!!! Lots of hugs to all of you!


TAH scheduled for March 13th

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