adenomyosis survey and options

How many have had hysterectomies for adenomyosis? Wondering if I should try other options before making the final decision. I am thinking about trying depo or the mini pill so I can keep myself fertile per husband request. Maybe he'll want another in 5 years LOL. I can't take regular birth control pills due to fibroids. I've been putting this off for quite awhile and thinking I'm chickening out of surgery after reading and seeing pics. ARrrgg I'll stay on my vicodin as long as dr lets me keep on it.

I have adenomyosis and I have tried everything from the pills to surgeries, laporoscopies and finally the doctors have concluded that hyst is the only treatment. I go in Aug 14th! YIKES!

My dr. thinks I had adenomyosis. My TAH was 7-30. I also had endo on my L ovary pretty bad and lots of adhesions. She had said I could try the BCP but that was basically it for the adeno. I am 35 and already have 2 sons, and didn't want any more children. So I really just wanted the surgery(I don't like taking pills on a daily basis, and the BCP give me headaches and nausea). I hope to get the path. report next week to know for sure on the adeno. I know I was just tired of the crampy achey feeling all the time. I am feeling pretty good right now. Good luck making your desicion, it is a hard one I know! I was just glad I finally had a possible diagnosis, I had gone to 3 diff. dr.s, one who said oh just take Advil, yeah right. So this dr. is the first who actually thought I had something wrong inside.

I had many (to me) years of pelvic pain, which began in my early 20's. Doc thought i had endo at first, and after my lap last summer, doc suspected adeno, which was comfirmed after my hyst in November. Now, correct me if I'm wrong, but I *think* that the only way to get rid of adenomyosis is a hysterectomy, and it can only be 100% verified after the uterus is in the pathology department and looked at.
I did have confirmation of adeno, and it was a relief to find out that everything I had felt was real, and not in my head. You know how we all start wondering if the pain is real! I have been blessed with my children, so that was not an issue at all, I sent DH to go get *fixed* when our youngest was 1. I had my hysterectomy at 28 years of age, and am thankful every day for my decision. It is so amazing to lie in bed and realize that there is no pain!
Good luck to you, only YOU can decide what you are going to do, many times a hyst comes down to simply a quality of life issue. Mine did, it was getting old dealing with pain 90% of the time.
BTW, I did try other options before the surgery, insurance required it...but that's another story! Nothing worked, and the day finally came when my doc informed me that I had 'earned' the surgery! My uteri had served their purpose, and were now giving me grief and it was time to go on with my life, and not be controlled by that.

Let me know if there is anything I can do to help, feel free to email me anytime!

Always sisters....

Love,
Ami

I go in on the 13th for my surgery. I have done the birth control pills, Dacocrine, Lupron, and had a couple of laps. Nothing helped. Having this done is a decision that only you can make. While your husband my want you fertile for a couple more years, he is not the one that has to deal with the pain of having this disease. You are. I wish you luck with your decision.

Yes, Adeno is only able to be confirmed after the hysterectomy is done and the uterus goes to pathology. I suffered with terrible, terrible bleeding that landed me in the ER back in February and was diagnosed with fibroids (never had any pain, though). Removal of just those was not something I was interested in since I was 40 years old and done having children. After my surgery, at my first post-op appointment, my doctor told me that pathology had found Adenomyosis, and that it's a good thing I had gone with the hysterectomy because had I ever chosen to just remove the fibroids, I'd have STILL come out of that surgery with very heavy bleeding! He told me that Adeno can cause just as much bleeding as fibroids can, and sometimes even worse. So I had two situations which were causing me all that awful bleeding that I'm so glad to be rid of! What a relief!!

There is no cure for adeno. All you can do is treat the symptoms until you're ready for a hyst. BCP's will only worsen the symptoms. The good news is that it's not life-threatening, there is no need to rush ahead and have the surgery until you are ready for it. So do some research and take your time. But you are entitled to a pain-free life. Do not feel guilty for wanting to feel well. When you're ready don't let anyone talk you out of it.

I too had adenomyosis. We tried other options (medication, D&C, hysteroscopy) and the adeno wasn't confirmed until after surgery. My MD told me also that hysterectomy is the only treatment for this condition. It was good for me to hear that I had made the right decision.

CM3,
I'm also planning to have a hyst. for adenomyosis, and understand it is the only cure. It might be a good idea to have another chat with your to clarify your situation. My understanding is that adeno. makes it very difficult to establish a healthy pregnancy, so you and your DH need to think all that through pretty carefully. I'd never encourage anyone to rush into such a big thing, but it would be awful to suffer the sort of pain I have each month for another 5 years or whatever, only to realise that it was unnecessary.

I too am a candidate for hyst. (supracervical - leaving ovaries) and it's a decision I've waited to make for many years.

My adenomyosis was confirmed by MRI which a fertility specialist ordered after listening to my medical history. At that time I was trying to confirm a bicornuate/septate uterus.

Adenomyosis is a progressive disease and the only other 'treatment' I've heard/read about is doing a uterine resection where they remove the adenomyosis and reconstruct the uterus.

I've questioned my Gyn about this and she felt it's an unsuccessful procedure given that adenomyosis is a "profuse" disease and doesn't have definite location in the uterine wall.

My decision is based on too many years of uncontrollable bleeding, anemia, endometriosis, and a septate uterus - AND the knowledge that this could continue for many years to come!

I don't take the decision to do the hyst. lightly - in fact I'm pretty concerned about the outcome of all of this - but feel I'm making as educated a choice as possible.

My advice - confirm your adenomyosis if it's possible!

best of everything.