Adenomyosis with pain only?

Does anyone out there have adeno with pain as your primary symptom? My doc says I have adeno and that the MRI proves it, but I keep reading about all the heavy bleeding, clots, etc. that go with adeno. I don't have any of that--so does that mean I don't really have adeno. I do feel like my tummy is swollen at times, and the pain is almost unbearable at times. I would love to hear from you. Thank you-Margaret

Even though the MRI says No evidence of adeno. My pain mimics it. My periods have always been 4.5 days before my son (c-section) afterwards, with pills, etc. They did become a little heavier when I got off the pill, but my periods were painful. But had pain over 2 weeks out of the month even without my period. Sharp shooting pains, fullness after meals, bloating, pelvic pain, rectal pain, irritability. My main complaint for pain more than flow.

Margaret, pain was what brought me to my OBgyn. My periods have changed in the last year to year and a half. Much heavier bleeding, and I've noticed more clots...and the clots being larger. My periods have definitely been more painful. However, had it not been for the pain after my period 3 months ago that hasn't really seemed to go away...lessons, worsens, sometimes fades...that sent me to the dr., I would not have thought anything about my heavier periods, clotting, as I just accounted it to my cycle just changing a little. Pain, for me, has definitely been my primary symptom.

Thanks for the info.--So are you feeling better now that you have had the hyst.? How did you make the decision to go ahead with a hyst? I am trying to decide what to do next. I go back to the doc in Aug. to talk some more. I have days that the pain is very bad, and the rest of the time I just don't feel good. I am getting depressed about the whole thing. It is wearing on my emotions. What advice can you give about having the surgery? Thank you for talking to me.--Margaret

So you are getting ready for a hyst? How did you come to your decision? Would you say it was mostly for pain? I usually hear from friends that having a hyst. was the best decision they made and they wish they had done it sooner. I hope all goes well for you--I'm sure it will!

I think the most important thing to remember is that you have to do what is best for you...
And, even though my hyst is scheduled for this Tuesday, the 24th, I'm still trying to make sure it is the best thing for me. At this time, I am mainly having it for the pain and because I am tired of feeling cruddy--whether it's sharp ab pain, cramping, dizziness, nausea, back pain, upper leg crampiness, gassiness, being irritable...it just seems that I feel yucky for one reason or another almost every day. I do have some days where I've felt pretty good, and wonder, why am I doing this? On the good days, I wonder if I should just delay it until the pain is unbearable "all the time." On the bad days, I'm so done with it, I just give up and think "just get it over with." Right now, I'm really at the stage of uncertainty. The only certainty I am gaining through all of my reading is that I haven't been able to find anything other than a hyst that will take care of the adeno and the pain. For that reason, my hyst is still scheduled. I'm still looking...that last ray of hope? I've placed undue stress on myself as I'm not ready to say, yes, I'm certain I want this...but husband has time scheduled off work, I have enough time to recover before school starts (teacher's aide) if I get this done next week and then I won't have to take time from work, and Mom is already coming from out of state to stay with kids...but I know myself, and if I don't get this done next week, I will put it off until next summer, and I don't think I can face a year of the pain and yuckiness...for these personal reasons, unless something bizarre changes, I will be having the hyst on Tuesday. However, my OBgyn did say that it was my choice when to have the hyst, and she recommended having it when it began affecting my lifestyle. It's just up to us personally when we feel it is affecting our lifestyle enough to have the hyst. She was great in telling me that I don't have to have this done, it's just the only thing she can offer me that will take away the pain, unless I want to eat pain meds (my words). The only information I've been able to find is that the pain may increase over time, the size of the uterus may increase over time. Nothing has given me the information that the pain will stop and/or the uterus will shrink. All I've been able to find is that the symptoms get worse. Now, if anyone has any information that there is something else that takes care of the pain....please...would love to know about it. The only thing I've found is menopause. Please know that my OBgyn also only recommended the hyst after she asked if I wanted to have any more kids, and also based on the fact that I am 34 and many years away from menopause. I'm scheduled for a vaginal hyst of my uterus and cervix. My mother also had a hyst in her mid-40s. I think she had dealt with pain for several years, and she had been bleeding for 3-4 months straight, was in a lot of pain, and was extremely anemic. Of course, she should have gone into the doc much sooner than she did. I don't believe I am of the same personality to deal with this until it got to that stage. I have my pre-op on Monday morning and have a ton of questions for my OBgyn. Please continue to do your research, and keep asking your questions on hystersister. Reading the blogs here have answered a lot of the personal questions I've had and have helped me feel more resolute about my own decision. Now that I've written a book...this is just where I'm at, I know that I need to be at peace with this before Tuesday morning, and remember that you need to be at peace with your decision that you make on your own with your own questions and research--no matter what your decision is. What I keep trying to tell myself is that if I want more time, I can have it. This is an irreversible decision, and you should take all the time you need (or your body allows) to make it.

To wildroses--Thank you for your response and insight into your decision and upcoming hyst. Your words seem to describe my own feelings and symptoms. I can really relate to wanting to go ASAP when the pain is bad, and then having second thoughts when I have a better day. I guess it is something we all struggle with. I'm 48 and hoping this will resolve after menopause, but I'm not sure if my quality of life will allow me to wait.
Thank you again for sharing with me. It sounds to me like you are well prepared and ready for better days. I will be thinking of you on Tuesday. Take care--hope to talk to you more!

Thanks! Tomorrow's my day! I've heard from many people that they are very glad they've had this done, so I'm hoping that I am one of them! Take Care, All!

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Originally Posted by McCollum To wildroses--Thank you for your response and insight into your decision and upcoming hyst. Your words seem to describe my own feelings and symptoms. I can really relate to wanting to go ASAP when the pain is bad, and then having second thoughts when I have a better day. I guess it is something we all struggle with. I'm 48 and hoping this will resolve after menopause, but I'm not sure if my quality of life will allow me to wait. Thank you again for sharing with me. It sounds to me like you are well prepared and ready for better days. I will be thinking of you on Tuesday. Take care--hope to talk to you more!

Hi there. I just turned 49 in June...and well, let's just say that after my LAVH on July 5th......is the first time I have actually been pain free for the past 4 years. Now, I will have a much BETTER quality of life. Right up until I had surgery I was sitting in on the exam table at my gyn/surgeon's going over the consent forms for surgery, he was explaining the surgery procedure etc...anyhow..I was having HORRIFIC uterine cramps right in the office. He saw me wincing and stated, I feel so bad that you are in this pain now, but after the surgery your pain will be relieved.

I was starting to get my period 2x month (3-4 days of heavy bleeding) then the clots and then spotting on/off in between those 2 weeks. But it wasn't the bleeding that was bothering me it was the PAIN. I am telling you it was truly horrible, which caused lower back/lower pelvic pain, pain on top of my thighs, pain when going to the bathroom..and then when it was really bad I would get the dry heaves and be spending my time on the floor in the bathroom. I would have a few days each month with no pain....what kind of life is that having uterine contractions pretty much every day.

I should have did this 4 yrs ago, I could kick myself...for how good I feel now. I wake up each day VERY FORTUNATE that I know longer have uterine contractions. I can wake up now, get ready for work without spending an hour with bowel issues (due to the contractions) and heaving over the toilet. I looked sad, tired from lack of sleep & the pain. I couldn't be on pain meds other than ibuprofen since I had to work f/t. & needed to be coherent. I probably need botox now due to all the grimacing and pain I was in...lol!

Oh, I too was hoping this would resolve after menopause, however just turning 49 in June....I couldn't take it anymore, I wanted my life back. Best of luck to you in whatever you decide!!

P.S. I had the LAVH. Easy recovery, maybe 1-2 days of mild pain. I used one percocet pain pill when I came home, then remained on ibuprofen for approx 4-5 days. After that, I haven't had to take anything..yea! The pain from surgery is NOTHING like what I lived daily. Also, have high tolerance of pain since I could not take pain meds due to working f/t.

Lizzie

My dr says she thinks I have adeno. My periods aren't real heavy though. They have gotten heavier over the last two years, but not any more then needing a super pad for a day. But the pain is horrible. And now I'm getting cramps after an orgasm that last about an hour or more. I get cramps a day or two around ovulations and just real full and yucky three weeks a month. My dr said that due to my age (31 in two weeks) she doesn't want me to have to live like this until menopause. She wants me to try the BC pill Lybrel for a bit. She just called today and said the MRI was fine, but she still thinks it's adeno. She wants me to keep up with the pill as long as I can, but she knows it's making me feel horrible. She told me to call her if I just can't do it anymore.

i feel weird thinking about a hyst only for the pain, when I see so many on here who seem to have better reasons for it then I do. I'm not sure if I'm just downplaying it or not. But I also know I can't live my life like this. I can't keep taking time off of work due to my period. Part of me just wants to say enough and get it done. But I'm still worried.