Adenomyosis--I'm new to all of this--HELP!

Hello, all my fellow Hyster Sisters! I am so glad to have found your website. I was diagnosed with Adenomyosis in 01/04 after many years of suffering from excruciating cramps and incessant bleeding every month during my period. All my Ob-gyns had simply told me that, "it'll get better as you get older." They might as well have just patted me on the head and said, "You poor thing, bless your heart. Put up with it." Finally after divorce and the birth of my last child, I decided that I needed someone (anyone) to HEAR AND CARE ABOUT what I was saying and feeling.
Long story short (too late): three more doctors, and a visit to the women's hospital (an hour away), what I already knew was finally confirmed--Adenomyosis--through ultrasounds that were more extensive (and uncomfortable) than any I'd had before. I was actually smiling at the diagnosis: It wasn't in my head! Validation at last!
Now the hard part starts. Maybe I'm just worried about the unknown. I have started using the Nuvaring birth control device on a 28 day cycle with no break, so my periods will stop. Well, they have stopped. But I have traded the one week of pain (and wearing diapers), for night sweats, feverish feelings during the day (I just can't get warm), appetite is all messed up (I crave comfort food), my contacts feel like sand in my eyes, and all I want to do is lay around and feel tired--except at night when I'm drenched in sweat! My nerves are a mess--and my sex drive is gone, and I constantly have a fever blister on my mouth. Is all of this just from hormones?
I know this is the next logical step to avoiding a hysterectomy (the "only" cure for Adenomyosis), but what can I do? This is a constant bother and honestly distracting to all other aspects of my life.
Is a hysterectomy as bad as many of you say? How long should I try this hormone treatment? Should I just go see my Ob-gyn again? The only reason she isn't interested in doing a hysterectomy right now is my age: 36. I feel so alone and confused. Any help is more than appreciated. I'm so new to all of this...

ladeedah,

I'm sorry for all the pain you're going through. I know how awful adenomyosis can be...and the only sure "cure" is a hyster. I fought with it and doctors for about 10 years before anyone would take me seriously. Hormones didn't help, d&c made it worse. When the new specialist I found finally mentioned a hyster, I could have hugged him. No more 12 day periods every 3 weeks, dreading laughing, sneezing, coughing or any kind of movement that would cause instant gushing. No more bloating and pain 24/7. My migraines also disappeared (an unexpected side benefit and blessing).

A hysterectomy is major surgery. Make no mistakes about that. If you decide to have one, it will take you that 6-8 week healing time initially (6 months to a year internally, from all I hear and read and have felt). If you have someone who can help you for the first week or two, it may make it much easier for you. The best thing you can do for yourself is read read read and learn all you can. Ask questions...here and at your doctor's office. You are the only person who knows what you are willing and able to live with. Nobody else can make that decision for you.

Good luck to you in whatever you decide.
s
Cat

You know what makes me the maddest about all the stuff we have to go through? Some doctors and insurance companies decide on what our best treatment is based on our age.

After years of suffering and two laps for endo I finally decided that at 33 it was time for the hyster. My hubby and I decided long ago that we were going to have kids. I've seen the same gyn for the past 16 years so he understood our decision. Then came time for the insurance approval. I had to give them details about my life simply because I was so young and they wanted to make sure I understood that I couldn't have kids after the surgery. The scheduling nurse at the doctor's office said that it was because of my age, that other, older women didn't have to do that. There was even a point when the insurance company recommended that I wait another year or two.

Finally I got approved. After the surgery my doctor told me that the endo was so bad that it was in ovaries and tubes and adhering to my other organs (which was causing the BM problems), plus the path reports confirmed adeno. The doctor told me that I would have had major problems getting preggers even if I had wanted to.

I wanted so bad to call the people at the insurance company and say "See, I told you it was bad."

I had Adenomyosis. Horrible cramps, irregular bleeding, heavy bleeding, etc.
I had some painful tests done as well to find out that's what I had. With three children already (even though I was only 30) we decided that the Hyst. was the answer. My mistake, was to allow him to leave my ovaries. The hyst was done vaginally, so he never actually saw the ovaries and that area. So he didn't know that I had Endo. also. So, with in the year, I had cyst after cyst on my ovaries and still had pain. So I just had them removed.
I think if I had done it all at once, I would have been a happier person by now.
I think that if you are done having children, having the hyst. done to get rid of the Adno. is a great idea.

I did not know that I had adenomyosis until the path. report; however, I did try other things before having the TAH. Three years ago I tried taking bcp twice a day to stop the bleeding. No help. I also had a surgical hysteroscopy which helped for a short while only. Throughout this time, my main concern was that I wanted to leave my pregnancy options open.

To make a long story short, I am 3 weeks post op and now realize (hindsight) that this was the best decision for me. No, it may not have been the "ideal solution" for my wants; however, after seeing the path. report, it was the best thing for me. I can now live a fuller life without all the problems I was experiencing.

It was almost like a huge relief to know that the only real remedy for all my symptoms was the hyst. I also had fibroids, varicose veins, an enlarged uterus, etc.

In an ideal world, I would have liked to have been able to conceive, BUT my path. report also reported all tumors, etc. were benign. To me, that is golden!

Best of luck to you and your decision. The hardest part is that the decision ultimately rests upon our shoulders. We can listen, talk, and discuss, but in the end, the decision must come from within. God Bless!

Your kind words and support and especially the personal experiences mean the world to me. I have no one close enough to talk "girlie things" with. Thank you all so much and I'll read and examine (and read) and discuss (and read) and pray. God Bless! Now, to get offline and make another appointment with my Ob-gyn.......lots of questions to be answered.