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Unread 07-08-2010, 10:50 PM

Hi just wondering if anyone here was diagnosed with adenomyosis and if so what symptoms did you have prior to considering a hysterectomy? I was dx'ed with nodular adenomyosis in a 2nd opinion and had previously been dx'ed with fibroids. Both dr.'s said hysterectomy but the first Doc said I was a candidate for laparoscopic and the 2nd Doc said abdominal due to the size of my uterus. About the size of 28 weeks gestation. Preparing for the Big Date and wanted to hear from other adenomyosis Dx's Thanks!
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Unread 07-08-2010, 11:06 PM
Re: Adenomyosis

We have had several ladies here on the site with both adenomyosis and fibroids! You are not alone!

If you are interested, you can read through some of our information in our Resource Database. You can learn a lot about both conditions there!

Also, we have several Pre Op Articles you can read through to help prepare for your upcoming surgery!

Wishing you all the best!
Unread 07-09-2010, 06:22 PM
Re: Adenomyosis

Thank you so much!
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Unread 07-09-2010, 06:33 PM
Re: Adenomyosis

Unread 07-09-2010, 06:47 PM
Re: Adenomyosis

A diagnosis of adenomyosis can not be confirmed until after the uterus is removed. And the symptoms can vary from woman to woman, but I can share my experience.

Before my hyst my symptoms were painful periods (trapped at home for days, vicodin can't even touch it kind of pain), mid cycle pain, and unusual menstrual flow. One period could be nothing but spotting with tons of pain, another would be "normal", and out of the blue I would have flooding, where all of a sudden I'd go through a super tampon and fill a pad.

My docs suspected adenomyosis from my symptoms and from what they could see on u/s. And they thought I might also have endometriosis. The pathology after my surgery confirmed their diagnosis of adenomyosis. And she did discover quite a bit of endo during my surgery.

My uterus was also large, but I'm not sure if it was as big as 28 week pregnancy. My doctors never measured in those terms. I do know that it was 223 grams - 9.5 x 6.2 x 5.5 cm. I was able to have a robotic assisted vaginal hyst.

Hope this helps, good luck with your surgery!
Unread 07-09-2010, 07:30 PM
Re: Adenomyosis

My LAVH was for adenomyosis. Based on what information have the doctors diagnosed fibroids than adenomyosis? Have you had an ultrasound or MRI both can be used to support a diagnosis of adenomyosis. A doctor usually will make a preop diagnosis through these tests, physical exam & clinical presentation. Unless the doctor is lucky enough to biopsy a section of uterus containing the cells, confirmation is only through pathology post hysterectomy. Symptoms do vary but general characteristics are heavy painful periods, an enlarged, boggy uterus. Pain with bimanual exam.
Personally I had progressively heavy periods with increasing pain. As time progressed symptoms of pain and fatigue lasted longer and longer. Six weeks prior to my hysterectomy I have a D&C resulting in onset of severe cramping (labor like pains) that persisted until surgery. Pain worsened with movement improved with rest and hotpacks. Pain medication and motrin hardly took the edge off.
Doctors opinions differ on the size of uterus for a vaginal hysterectomy. Some doctors are more comfortable than others in the removal of a large uterus. Have you considered another opinion? Maybe a third opinion would clarify your diagnosis and help decide what type of surgery would be best. Are either of your doctors well versed in the removal of endometriosis? Often is is present with Adenomyosis.
Good luck
Unread 07-09-2010, 07:39 PM
Re: Adenomyosis


My symptoms were horrible painful periods. I would pretty much ache from my belly button to my knees. I had low back pain, thigh pain, vaginal pain, rectal pain, pelvic pain, and diarrhea. My periods when not on the pill and before my ablation were very heavy with big chunks of stuff coming out. The ablation failed but it did help a litttle with the big chunk stuff and it was not quite as heavy but the pain got worse. Went back on the pill for a couple of years. Then blood pressure got really high, had to stop the pills. Finally gave in and got the hysterectomy. I am not completely recovered from that yet but it is so much better than before! I love not having all the pain associated with my periods and not having a period. Hope this has helped some. Oh and I had two doctors tell me that I had to have it done abdominally and could not be done laparscopically due the size and how high up my uterus was. I also had a previous c-section, so not sure if that was another reason. My dr suspected adenomyosis but said only the pathology report could diagnose it for sure. I did have adenomyosis and about a dozen fibroids.
Unread 07-10-2010, 07:25 AM
Re: Adenomyosis

My eventual diagnosis was adenomyosis - but we did not know or suspect that until after my surgery. I did have chronic pelvic pain, but not the heavy bleeding that might have tipped her off.

So while we scheduled the surgery because of recurring polyps, the Monday morning quarterback analysis was we made the right decision for a reason we didn't expect. I had vaginal hysterectomy, which she was quite comfortable in doing, and the physical recovery has gone pretty well.
Unread 07-10-2010, 08:21 AM
Re: Adenomyosis

I had a TVH with bladder lift after they didi a biopsy I was told I had adenomyosis. From what I have read after your uterus is out is when most people are diagnosed but think I read something about MRI or something like that can sometimes diagnos it. My symptoms I had cramps most of the time for the last I think about 6 months, not bad cramps but they were always there. My periods were getting heavier as time went by but read that usaully is not a symptom I did have a couple of small fibroids. Cramps were livable during periods but I think I can handle pain pretty well. I went in for surgery not because I couldnt live with what was going on but because my dr recomended it and pain and bleeding were gradually getting worse and I had a friend who kept putting hers off and ended up with an emergency TVH the week of Thanksgiving. I wanted to have control of my recovery time and not take a chance of having an emergency surgery like my friend. Hope this helps.

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