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Undetected adenomyosis? Undetected adenomyosis?

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Unread 02-24-2012, 09:48 AM
Undetected adenomyosis?

Hello Sisters,

Something has been bothering me lately and I figured I will throw it out to you to see if anyone has had a similar experience. I had a lap back in October due to severe pain and blood pooling in my uterus...the cause being cervical stenosis as a result of an endometrial ablation. Pain was still a constant, bled all of November...just spotting in December and cramping got worse. First weekend in Jan I ended up back in the hospital with suspected adenomyosis and the plan was an emergency hysto after an MRI to diagnose. MRI was inconclusive. Is it possible that when they do my hysto at the end of March they may still find it? I still have pain and horrible brown discharge but no periods. So done with all of this....
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Unread 02-24-2012, 10:59 AM
Re: Undetected adenomyosis?

Yes, you could still have adenomyosis despite a negative mri. From the papers I have read an mri is only about 80-90% sensitive for adenomyosis. This means that 10-20% of the people with the disease will have a negative mri. Also, keep in mind, that data comes from specialists that are well versed in adenomyosis. Many radiologists may not be trained enough in it and may miss it as well. So you may very well still have it, but either way you still have very real problems. So don't worry about the mri and focus on your up coming surgery. Good luck!
Unread 02-24-2012, 11:15 AM
Re: Undetected adenomyosis?

Thanks so much brwneyevetgrl. I am constantly second guessing myself. Last week was full of cramping and horrible brown yuck discharge. I have no clue what is going on anymore. What I do know is that I want to put all of this behind me. Thanks for your support!
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Unread 02-24-2012, 11:38 AM
Re: Undetected adenomyosis?

My adeno went undiagnosed until my complications develloped after my ablation. The surgeon found it when he opened my uterus after removal. The diagnosis was not official until my hyster pathology came back. It wa so nice to have an explantion for many of the things that had been happening to my body.
Unread 02-24-2012, 11:40 AM
Re: Undetected adenomyosis?

Thanks Beth...my worst fear is to get the hysto done and have all the path come back saying that nothing was wrong!! My ablation caused so many problems and I am not willing to roll the dice every month. How are you feeling now?
Unread 02-24-2012, 11:58 AM
Re: Undetected adenomyosis?

From what I read, they can't confirm adenomyosis unless they do a biopsy or pathology after the hysterectomy itself. I found out I had it AFTER my surgery. Nice that I don't have it anymore though!!
Unread 02-24-2012, 12:05 PM
Re: Undetected adenomyosis?

Very happy to hear this sisters! Besides a few small cycsts there seems to be no explanation for my pain and strange happenings...my last Doc had suspected adeno...then changed his mind and said he found no reason to do the hysto...after I spent 4 days in the hospital writhing in pain. My second opinion says absolutely..these things will not resolve themselves and I have been through enough. This should have been done back in January but at least I feel more confident with my new Doc. Anyone else get turned down?
Unread 02-24-2012, 12:50 PM
Re: Undetected adenomyosis?

I suspect that after they do the hysterectomy they will find the same hing with me. I have been putting up with this since I was a kid. I had an ablation almost a year ago and evrything just got so much worse after it but I just couldn't get the gyny to listen to me. He is begrudgingly now going to do a hysterectomy but is not happy about it. Good luck I just wish I had a date for mine so I could stop all the pain and bleeding.
Unread 02-24-2012, 01:40 PM
Re: Undetected adenomyosis?

I am feeling great. I am 10 1/2 weeks post-op. No pain since surgery. Only took pain meds for a few days. There are still some tired days, but that is to be expected. I started my fitness routine again this week. It is so great to be back in the pool. I can tell my core muscles are really weak. Love the vortex pool for that. I am back to doing most of what I did before, farm chores etc. I just can't quite do as much in one day yet and I am not lifting the really heavy things yet. Cleaning stalls is not my favorite part of horse ownership, but it is so nice to be physically able to do that again. I am really looking forward to getting back in the saddle.

My Dr did say that adeno can only be officially diagnosed after surgery in pathology. Until then adeno is officially suspected. so my surgery simply confirmed what we suspected. I have had horribly painful periods since I was a teen. I missed several days of school due to my period. Everyone thought is was all in my head. No one ever did anything about it. Looking back I most likely had cysts and adeno the entire time. Now understanding my history I am better informed to help my daughter if she has a rough time with her cycle during her life. I can rest easy just knowing that.

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