Second opinion-Adenomyosis (updated 9 months later)

My adeno was advanced and didn't show in ultrasounds, don't be fooled by that! I also had Fibroids and endo, but most of my pain came from the advanced adenomyosis. I never had large blood clots either. I'd get smaller ones, but if your waiting for huge clots be advised you may not get them.If your daily life/activity level isn't being ruined by this you can stall longer. My quality of life got so bad after stalling that I knew it was time.You'll know! If it isn't life threatening or causing you so much inconvenience on a daily basis you don't need to rush! Be honest with your doctor and see where that visit leads!
:cathugs:

I can't answer your questions either, but I think they sound like extremely sensible and intelligent questions! I'm sure if you talked to your doctor about everything you've posted so far in this thread, she'd be pleased to have that discussion with you. In fact, it might even help you feel more confident to print out what you've written here and take it along to your appointment. I've done that before and it's great -- it ensures I word things as precisely as I can, and prevents me from forgetting what I was going to ask!

Like cathb911, I also had years of normal pelvic ultrasounds. However, when I finally had a laparoscopy, the surgeon found severe endometriosis. Then it even took a SECOND surgeon, this time not just a general gynaecologist but a specialist in endo, to look at the lap images and say, "Hey, I'm pretty sure you've got adenomyosis, too!" (I say "pretty sure" because technically, adenomyosis is only diagnosed once the uterus is removed and the uterine tissue is examined in the pathology lab.)

Cathb911 is also correct in saying that adenomyosis does get worse as time goes on. It's not life-threatening, but it can be "quality-of-life-threatening". It has definitely reached that point for me, which is why I know I've made the right decision to have a hysterectomy.

Good luck, and welcome to the board, by the way!

Thanks tropicalcyclone, I am going to print it out because I always get home and say oops, I was going to ask ????? I find it so refreshing that other people have been through similar situations and I am not the only one. I will post after I talk to the doctor.

I am back from my office visit. I asked her my questions and she said that my results from ultrasound could have been not accurate because it wasn't a vaginal ultrasound. She also said my weight would not have made it look larger. She also said my IUD could be causing my problems, but even if it wasn't the cause, it certainly wasn't helping anything. She had a vaginal ultrasound done and some bloodwork. I go back on Sept. 12 for results. She said my options at this point are Mirena, ablation plus tubes tied, hysterectomy. She said when I go for the visit on the 12th if I have decided to remove the IUD, she wants to do an endometrial biopsy, but didn't want to do it today because she was afraid it might cause my IUD to come out. I was much more satisfied with this doctor. She acted like she would like to figure out what is causing my problems, but not do anything drastic yet. She said sometimes they don't find out until a hysterectomy is done. I am praying that if anything needs to be seen, it will show up on the ultrasound or in the bloodwork. Thanks for listening.

Thanks for the update, Rhodes95. It sounds like you had a great discussion with the doctor. Everything you've reported sounds like the doctor is thinking about things in a systematic, "problem-solving" way. I wish you all the best!

This thread has actually helped me. I have written down a lot from here and plan on taking it to my second opinion. I was also diagnosed with adenomyosis after 2 laproscopic procedures. I am 25 and hoping the diagnosis is wrong. However, the pain keeps getting worse and ive been dealing with it for several years already. I hope you find what you are looking for. Thank you for asking the right questions for me to learn from.

I went back to the doctor yesterday for my follow-up appointment. I told her I had decided to have my IUD removed and see if that was making the problem worse. She gave me my ultrasound results and it showed that my uterus was only 9cm. I asked her if she still wanted to do the endometrial biopsy and she said that the ultrasound showed that the lining in my uterus was pretty thin, so unless I just wanted it, she thought we could wait and see how things go once the IUD was removed. We also discussed birth control and she gave me a prescription. Then she removed the IUD and when she got it out she said it was bent. Thinking I didn't hear her right, I asked her what? She said yea it was bent and that is probably why you have been in pain. I start the birth control soon and she is hoping it helps with the pain and the heaviness-especially once she saw the IUD was bent. She told me that while my IUD may not be the root of my problem, it is making it worse and I assume even more so since it was bent. Anyway, so now we go from here and see how the pain and periods are on birth control and hope she was right and that it is much better with the IUD out. Thanks for listening to me

I'm keeping my fingers crossed things get better for you! ( a bent IUD, oh my! )

It's been a couple of weeks since I had the IUD removed and I haven't had the pain I was having before. I had my first cycle without the IUD and at first there was some black clotting, but then it was lighter than it has been in a very, very long time. I am thinking the IUD was making my problems so much worse and I am happy I had it removed.

Glad to hear your doing better!!