Adenomyosis

Anyone else having or had a hysterectomy due to this diagnosis? Were you ever tested in any way for it or were you just told this is the culprit? I am experiencing the latter and want to be sure that there is not pre-op test that can confirm. Seems extreme to remove the uterus to confirm a guess...

I would love to hear your experiences...

I was diagnosed with adenomyosis after my uterus was removed....before that, I had very heavy periods for the last few years....in the last year, some were lasting weeks at a time....I had cramping and back pain constantly...I would only have maybe 10 days in between bleeding and than it would start again.......I had been having vaginal ultrasounds every year for the last 4 years as well as cervical biopsies to see what was going on...the ultrasounds would show that my uterine walls were thickening.....I finally said enough....I did not want to continue to bleed the way I was.....so far, so good....I feel alot better, alot more energy now and saving alot of money by not having to buy pads, tampons and new underwear!!! Good luck in your decision

My dr. suspected adeno because of an ultrasound. When I came home and started reading up about it on the internet, I kinda "confirmed" the diagnosis for myself based on the typical symptoms. They fit much of what I was experiencing.

Most everything I read said there is no way to diagnose adeno for certain w/o surgery. For me, it boiled down to a quality of life decision. At this point, I knew we would be having no more children, and it seemed pointless to go thru the pain/excessive bleeding every month.

After I had my surgery, dr. said it definately looked like adeno, but he sent it off to path anyway to make sure.

I'd suggest doing as much research as possible before your surgery so you'll feel good about whatever you decide to do. I just typed in adenomysosis in the search engine and read as much as I could find.

Good luck!

I had an ultrasound, and it showed I had small fibroids, but it also showed that the walls of my uterus lining were bumpy and abnormal looking. So, my doctor did a uterine biopsy on my just to rule out cancer since the uterine lining was abnormal. Thankfully, the biopsy came out benign. So, the doctor told me he thinks I have adenomyosis. I have done a ton of research on adenomyosis and everything I read on adenomyosis I feel like describes my symptoms perfectly.

When my doctor told me that a hysterectomy is the only true cure to adenomyosis, but he also said in the same sentence that he could not 100% diagnose adenomyosis until they took out the uterus and examined it, I was not sure I wanted a hysterectomy for the same reasons you are stating.... I wasn't sure I wanted my uterus removed only because they "suspect" I have adenomyosis.

BUT, I waited a couple months after my doctor diagnosed all of this, and my periods are so painful. I have such severe cramps starting about 2 days before my period and for the first couple days of my period, plus I have very heavy periods as well. On top of that, I just have this heavy, full and crampy feeling all month long in my abdomen. My OB/GYN also told me when he examined me that my uterus was enlarged, and I can tell because anything tight around my waist is uncomfortable, and most of my jeans still fit, but they just feel tight around my waist.

I am done having children, so even though my doctor will not fully know that I DO have adenomyosis until after the surgery, I just want to get rid of the painful periods and this icky heavy/fullness feeling I have all month long. So, I do know something is wrong inside my uterus, and I truly believe it is adenomyosis, based off of all I have read about it.

And, it might be I'll have the hysterectomy, and they won't find adenomyosis and maybe what I'm experiencing is only from the fibroids.... but regardless, I just am ready to feel normal again, and stop having all the pain I've been having.

I am having a CT Scan on Wednesday of my abdomen/pelvic area, and so I don't know if a CT Scan will confirm adenomyosis, but I'm sure it'll show more than the ultrasound showed.

I hope you are able to find peace with whatever decision you make. I know it's a very hard decision to make.... it was very hard for me, especially knowing I don't have a truly 100% diagnosis, BUT I KNOW something is not right, and the ultrasound confirmed there is abnormalities in my uterus.... so for me, that is good enough to have the surgery.

Take care!!

I feel like I'm the poster child for adenomyosis. After years of extremely heavy and painful periods - I finally found a doctor which would give me options. I was bleeding 10 - 12 days straight and using a super tampon and a pad every 2 hours. The pain was horrific.

Once my dr. mentioned adenomyosis, and ultrasound was scheduled. when the ultrasound results were normal I broke down and cried - I was at my wits end. Even the pelvic ultrasound was so painful - when my DH and I would try to have intercourse it felt like he was stabbing my uterus with a stick!

When I broke down in her office - she told me that the only definitive way to diagnose adenomyosis is with a pathology report. I asked my doctor when I was in recovery if when she took my uterus out if it just crumbled in her hands. She just laughed and said no. The pathology report confirmed adenomyosis. YAY!

My quality of life was affected. I planned my life around my periods - I had to. Good luck in your decision.

It sounds like most of you have had an ultrasound or the like to look around. I am sure he had a look in 2004 with the ablasion but I assume things could change.

I, of course, know SOMETHING is not right. Whether it is adenomyosis or something else, I am not sure. I guess with such a life changing surgery, it seems that more testing would be done. I am not sure...

I also would like to add that the strangest thing has happened. My periods were so erratic from 1999 to earlier this year...but when the major pains started 8 months ago, my periods (with suddenly little to no bleeding) are now EXACTLY 28 days apart. It is all so weird. Over the years, I have gone from 10 day heavy flows 2-3 times a month to now unbearable pain and barely a trace of blood. I am so confused!

If I had not had a current ultrasound and my doctor was suggesting a hysterectomy due to syspected adenomyosis, even though I was having painful periods, etc., just so I felt I did as much as I could do to confirm in my mind a hysterectomy was the right thing, I would have requested an ultrasound, and found a doctor who would order an ultrasound.

This was not my case in that when I first went to my doctor about all my symptoms, I fully expected him to just tell me this is just a fact of getting older, and there is nothing he can do. But, instead, he told me it was not normal, and he sent me for an ultrasound.... and that is what has led to where I am now.

Maybe you could ask your doctor just for your peace of mind to order an ultrasound. Yes, it will not truly diagnose adeonmyosiss, but it might show abnormalities of some sort that might help you with your decision.

I agree.... a hysterectomy is very life-changing, so it is a hard decision to make. I wish you the best of luck. Like I said, it took me a couple months to come to peace about scheduling the surgery. I just had to do a ton of research and every time someone on this forum writes about adenomyosis and their experiences, it confirms to me even more that I do have adenomyosis, and I know I'm making the right decision.

My doctor will not be removing my ovaries. Now, if he told me he'd be removing my ovaries, I think I would continue to live with my painful periods because at age 36, I do not want to go into instant menapause. So, since my doctor is leaving my ovaries (the ultraound showed that they are perfecct and there is nothing at all wrong with them) gave me even more peace about having the surgery.

I hope you can find more answers on this forum... I know this forum has helped me SO much, and I'm still a month away from my surgery! :-)

hysterscared35,

To respond to your last post, I had a similar experience. For quite a while, I was only having very heavy periods, and I'd spot in between my periods and the spotting was heavy enough to where I'd have to wear a tampon. I'd never know when I was going to spot, and like I said, my periods were very heavy. But, then the spotting stopped about 5 months ago, and the pain came. That is what made me finally go to the doctor. The spotting and heavy periods were a nuisance, but I could live with it. But, when the pain started, that is when I went to the doctor about all of this because the pain was (and is) terrible.

So, now, I don't spot any longer (at least I haven't for 5 months), but I now have very painful periods, and this heavy/crampy/full feeling in my abdomen. However, my periods are still heavy.... I don't leak everywhere like some women do, but they are very heavy for the first 3 days, and my period lasts a full 7 days, but the final 4 - 5 days is moderate to light bleeding. Prior to ALL of this happening to me, since I started my period when I was 13, I have always had very light periods and no pain, so that is why all of this heavy bleeding got my attention.... it's not normal for me.

Anyway, I have no explanation why I did not used to have pain, but I used to spot a lot in between periods, but now I don't spot and I have pain.... but all I know is that this will all come to an end as of February 4!

Take care!

hysterscared35, I have similiar problems. My periods stopped and I spot randomly with serious cramping everyday allday, pain in my lower back. I feel like I fell from a horse and landed on my behind. I use to have heavy periods for 5-7 days and about 32 days apart...never regular since I started at 12. I've had 2 IUD's over the years, BC and I don't do well together. I have been on Progestrone and BC treatments the last 6 months and still no period. Pelvic ultrasound show working ovaries and my uterine lining seems normal...like I should be having a period. So they dialated my cervix thinking I had cervical stenosis...still NADA!!

So I am thinking about you and sending good thoughts and hugs your way. Good luck.