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Unread 01-06-2010, 03:06 PM

Had an LSH on 12/18, and had my 1st post-op visit today. Dr. told me from the pathology report that I had also had adenomyosis, and that was probably causing my heavy bleeding and cramping (although that fibroid the size of a peach wasn't doing me any favors).

I've never heard of adenomyosis before - did anyone else find out they had it post-op? I'm googling it, but any info would be appreciated, thanks.
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Unread 01-06-2010, 03:46 PM
Re: adenomyosis

I think adenomyosis is much more common than we realize. I think it's also common for it to not be officially diagnosed until after surgery. I had never heard of adenomyosis and had a heck of a time pronouncing it when the doctor told me that he suspected that I had it several months ago. I had a failed D&C and failed ablation attempt last summer. Heavy bleeding after the D&C along with the tenderness upon exam among other symptoms led him to come to that conclusion that I probably had adenomyosis. I also had several fibroids but they weren't large, so my main issues of tenderness and feeling bloated where coming from the adenomyosis.
Unread 01-06-2010, 03:50 PM
Re: adenomyosis

I am exactly in your shoes... I had my LSH on 12/18 too and I had never even heard of adenomyosis until I spoke to the surgeon on 12/24 and he told me that was what I had. I googled, and googled. It appears that in addition to my my fibroids, the adenomyosis really did a number on me, and was the reason for my very enlarged uterus. 8lbs. I don't understand how come a diagnosis for adenomyosis was missed with all my symptoms. I would think that someone should have figured it our years ago.
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Unread 01-06-2010, 03:59 PM
Re: adenomyosis

Hi, I'd heard of it when I was researching about my endometriosis. I'd suspected I may have it but there is no real way to get it confirmed until surgery, so I did have my TAH and my pathology report came back with it.

It is a huge cause of backache, bleeding and cramping. It's found in the tissue of your uterus and it's very common, especially if you have endo.
Unread 01-06-2010, 10:23 PM
Re: adenomyosis

this is what my pathology report showed as well. My surgeon explained it to me very well. Endometriosis is polyps that are in or outside the uterous...or ovaries. Adenomyosis is very much the same however these grow in the wall of the uterous which is why it is very hard to find them until removal of the uterous is done and pathology report completed. Hope this info helps.
Unread 01-07-2010, 03:19 AM
Re: adenomyosis

It grows into the muscles of the uterus and cause for additional contractions. This is what causes the severe cramping. I found out I had it also. Sometimes it would feel like I am in labor. So, so glad that I don't have that pain anymore.
Unread 01-07-2010, 07:10 AM
Re: adenomyosis

According to my Gyn, adenomysis can't be diagnosed until the uterus is biopsied, which is why you don't know you have it until after you've already been treated for it. She explained it as being like endometriosis, in the wall of the uterus, causing it to enlarge, become spongy and tender, and causing severe cramping and bleeding.
Unread 01-07-2010, 07:14 AM
Re: adenomyosis

slyoung1, that is interesting about the uterine biopsy. I had a uterine biopsy for cancer 2 years before my hysterectomy, came back negative... I wonder if they just never tested for adenomyosis for me. I just cannot understand how my obgyn missed an 8lb uterus as a problem.
Unread 01-07-2010, 07:44 AM
Re: adenomyosis

I had LSH on November 30th, my pathology came back with the same report. I knew I had large fibroids, but I didn't know about the adenomyosis. My Dr. told me the same thing, it's like endo, but in the walls of the uterus and it is what caused my heavy bleeding and clotting. I also had a major adhesion to my bowel, my surgery took 3 1/2 hours because she had to call in another surgeon to separate it without damaging the bowel. I think both the adenomyosis, and the bowel adhesion was as a result of a myomectomy I had back in 2004 for the fibroids. It's just my theory of course; and all went well my uterus is gone, so no worries. However, I do believe the internal staples they had to use for my bowel (which do not come out, and I didn't find out about until my post-op) have made my recovery a little slower than normal with LSH.
Unread 01-07-2010, 12:59 PM
Re: adenomyosis

I was actually diagnosed with adenomyosis before my hysterectomy with an MRI of the uterus. My doctor told me that the hysterectomy was the only solution, so that was helped me decide to go ahead with the surgery. The biopsy confirmed it along with fibroids. I had never heard of it either. I am only 4 1/2 weeks post-op so I am still recovering --- slower than hoped, but glad to get it over with.

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