I haven't officially been Dx with adenomyosis but my specialist suspects I indeed have it. My last gyno Dx me with IC ( interstitial cystitis ) or painful bladder syndrome. It just didn't add up to me which led me to the decision to seek out another opinion. Adenomyosis makes way more sense.

As far as getting a hysterectomy, if you feel it's the wrong path to take, them by all means DO NOT DO IT!! I have been advised to get a hysterectomy by several doctors and even though I'm almost 40 years old and my husband and I don't plan on having children, it doesn't mean I want them to just "take it out". I've been through 3 gynos and finally found a specialist ( endo and pelvic pain ) that doesn't feel a hysterectomy will solve my problem. Chances are my endo has spread past that point. Not to mention all the crap you have to endure post surgery with HRT and such. I'm WAY too young to be going through all of that!! And like you said, "this will make it final" and I'm certainly NOT emotionally ready to face that!

Basically adenomyosis is endo inside your uterus and you really can't get in there to remove it unless you just take the whole thing. I would most definitely think about getting a second opinion. Even if you only get a partial hysterectomy, ( ablation ) you most likely will end up getting a full one as this happens to many women.

I say to listen to your womanly intuition!! Ask for a referral for a different gyno or if you can find one, a specialist. I drive 2 hours one way to see mine, but it's totally worth it!!

Stay Gold!

i've been dealing with adeno for years....i was suspected to have it when i had my first lap and that was when i was 26. i'm now 33. lupron really helped with mine. i know that lupron is a really controversial topic on this site, but it worked on both the adeno and the endo for me. i can't even tell you how many times i've been told that i need a hysterectomy and i totally can relate. it's even worse then having endo as far as having less treatment options. so sorry, and if you need someone to talk to about it...i'd be happy to listen.

Thank you both for the replies. I have suffered for 20 + years and part of me knows a hysterectomy is probably best, I am just scared. I have all kinds of questions about it.
I am glad Lupron helped you. I personally am terrified of it. I tried it about 9yrs ago, and after my 2nd injection, my spleen ruptured and I almost died. Of course this couldnt be contributed to the Lupron, but I believe it had something to do with it. Tried all the hormones, thats why I guess hysterectomy is my only option--just not wanting to admit it. I know I can't keep on like this. Been heavily bleeding (to the point of needing transfusions) since Feb. And the pain is unreal, I can not even work now.

I can certainly relate reneetami to being scared about trying Lupron. I am in that same boat as we speak. My endo went from mild, when I was first diagnosed Mar of this year to being so bad that they wanted to take out my right ovary during my previous lap which was this past Fri. He cleaned up the ovary as best as he could but could not get rid of all of it without taking the ovary. Because of me only being 24 and wanting to hopefully have 1 more child before I give up my goods, he decided to leave it in. I know Lupron is going to be his next choice of action but I am afraid it isn't going to be mine. I know there are women who have had a lot of great help from Lupron but I am so worried that it will only cause more problems. Sort of like how I got colitis from an antibiotic that was given to me to get rid of the horrible strep throat that I had been dealing with for months before I had my tonsils taken out. And that antibiotic was no where near as controversial as the use of Lupron seems to be.

I am pretty certain if my disease progresses the way it has in just 3 short months that if other treatments, such as trying the depo provera do not work that I am going to wind up having an oophorectomy (removal of just the ovaries) or a complete hysterectomy. Anyway, best of luck to you in your decision making. Just try to remember that it's your choice to make, not your doctors!

omg! i'd be scared to death to try lupron too if my spleen had ruptured while on it... that's awful. i'm so sorry. i believe that lupron can be attributed to almost anything too. the doctors don't tell you even half of the stuff that it can possibly cause.

i forgot to add that i've been thinking about trying the hcg diet, as i saw one girls posting on the ERC's site that she was only doing it for weight loss, but it ended up helping her endo... pseudo pregnancy sounds safer than pseudo menopause and i'm wondering why doctor's don't offer us this choice. there is some supporting evidence that it can help too, so it might be worth a shot. i figured that it can't be as bad for me as lupron and if it works, that would be awesome!!!

Im sorry you are suffereing like this i truly am, i like you have PCOS, Endo and Adenmyosis, i have been told several times to have a hysterectomy, i am 30 years old and have no children. we are here for you. How is your husband is he supportive?

I have just had a hysterectomy becuase of Adeno. It has been hard to find people who have it to talk to about it!
I have kept my ovaries, but it was a huge decision for me to give up the opportunty for children. In the end my partner said he would rather have me healthy and pain-free, so you just need to weigh up what your health and a "normal" life is for you. It sux to have the chance taken away, whether you were going to use it or not. Its part of us being women, and I wonder if its harder because of all the other "women" things we suffer through, like periods, that make it worse to decide. DUnno
We're here to chat to though. I am in less pain than I have been for years, and its only been 2 months. The equivalent to Lupron that I went on helped for a few months but not long-term. Everyone is different though, it might help to try it so you can rule it out for yourself.