does anyone here have any experienc with this? If so, what was the outcome? What were your symptoms? Any info would be greatly appreciated.

By Kim on Friday, March 12, 2004 - 09:02 pm:

I'm sorry, I did not specify. I am not asking for links or medical terms, I want to know if anyone has personal experience with this diagnosis. Thanks.

By Annie2 on Friday, March 12, 2004 - 10:14 pm:

I don't, Kim, but I'm sure you'll have some insight soon.

By Mcrosby57 on Saturday, March 13, 2004 - 12:40 am:

I have/had adenomyosis. What question do you have?

Mary

By Karen~moderator on Saturday, March 13, 2004 - 09:50 am:

Kim, I just emailed you, 3 times actually, I wasn't too awake....LOL

Read the 3rd email..........

{{{{{{{{{{hugs}}}}}}}}}}

By Mcrosby57 on Saturday, March 13, 2004 - 11:05 am:

I didn't post much in my first e-mail, sorry. I guess I was tired.

I was not diagnosed with Adenomyosis until after my hysterectomy with the pathology results on my uterus. I mostly had just very bad PMS symptoms: migraines, frequent and long periods, mood swings, insomnia, breast tenderness, bloating, back aches, etc. Pap smears and vaginal exams were very uncomfortable. Sex was OK but I was starting to notice a difference. Since the diagnosis is not easy to make, many women go untreated and undiagnosed. Frequently, it is confused with Endometreosis (sp?) and perimenopause and so is treated that way. I tried various hormones, diet, exercise, anti depressants, migraine medicines, natural pathic/alternative medicine, sleeping pills, etc. and never really had success with those. I am not overweight: 5'5", 125lbs. I have had two children and didn't show any symptoms until after they were born so I can't comment on the impact to pregnancy or fertility.

After 7 years for trying different remedies, I finally had my hysterectomy. It was a Godsend. Since this is a gradual progressive disease, over time I had not realized how badly I was feeling. I have never felt so good since my surgery.

One thing I do know is that it is not a commonly known disease. Most women have never heard of it. I frequently wonder how many women have it and are being misdiagnosed like I was. I'm not even sure what meds. or remedies there are for the disease but I know my surgery was best for me and took care of the symptoms completely.

Any other questions?

Mary

By Texannie on Saturday, March 13, 2004 - 11:45 am:

www.hystersisters.com is a great resource. It has tons of articles and posts on dealing with it.

By Mcrosby57 on Saturday, March 13, 2004 - 12:08 pm:

I quickly perused the site, Texannie, but didn't see anything on Adenomyosis. What section of the site has information about this disease?

Thanks,
Mary

By Texannie on Saturday, March 13, 2004 - 03:22 pm:

I just did a search and here were the posts that came up. Didn't go through all of them.

http://www.hystersisters.com/vb2/search.php?s=&action=showresults&searchid=343792&sortby=lastpost&sortorder=descending

http://www.althysterectomy.org/adenomyosis.htm

http://www.hystersisters.com/vb2/link.php?s=&action=browse&cid=6

By Kim on Sunday, March 14, 2004 - 04:39 pm:

Thanks so much ladies. I have all the symptoms above and also horrid daily pain in my abdomen which often radiates down my leg. When I was having sex, before h left, sometimes it was really bad. My uterus is also over towards the right sode more and that hurts more than the other side. It's enlarged. I have had problems since I was young, had a lapro at 19, cysts on ovary. The pain is unbearable at this point. I can't ignore it anymore. I found the hyster site the other day and found some info. Thanks, and please, anyone add if you can. I need to know all I can about this!

By Mcrosby57 on Monday, March 15, 2004 - 10:28 am:

Kim,

Don't take our very different and person experiences as medical advice. What does your doctor advise? Sounds like your problems are more than just Adenomyosis. I'd talk to my doctor and work with him or her to get a resolution.

How old are you? Have you had children? Maybe some of your symptoms are peri-menopause. Your cysts could be acting up. None of us here can diagnos for you.

I also know that life style changes have made a difference for me. I exercise everyday before going to work. I have cut out a lot of red meat, going on a low-fat diet. Those things didn't help my Adenomyosis but they did make a difference in my hysterectomy recovery and how I feel now.

Mary

By Kim on Monday, March 15, 2004 - 05:53 pm:

Not looking for a diagnosis, already have one from the dr. Just looking for experience with this problem. I am trying to find as much info as possible.

By Wjl on Thursday, May 6, 2004 - 11:46 pm:

My Dr. has said the only way to cure me is to remove my uterus, or to help my symptoms use some form of birth control. I'm 37 years old and don't know what to do. Has anyone one got any information, or been through this?

By Mcrosby57 on Friday, May 7, 2004 - 01:40 am:

I had my hysterectomy about a 1 1/2 years ago. It has made such a difference in my life!!!! I was in pain and didn't even know it since I was so used to it! Birth control never really helped me much. I have been so happy since my surgery, which BTW as a real piece of cake. If you've had children, a vaginal hyster is nothing. Take care of yourself. Listen to your doctor and your intuition.

Mary

By Texannie on Friday, May 7, 2004 - 02:26 am:

I had a hysterectomy in August, and while it's been wonderful for me, it's not a decision to be made lightly. www.hystersisters.com is a wonderful wealth of information and support.

By Wjl on Saturday, May 8, 2004 - 11:13 am:

Thank you for writing, I will definitely check out that web site.

By Texannie on Saturday, May 8, 2004 - 11:19 pm:

Good luck with your decision!