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Seeking advice from adenomyosis patients Seeking advice from adenomyosis patients

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Unread 06-04-2008, 02:17 PM
Seeking advice from adenomyosis patients

Hi ladies, so my hyst is scheduled for the end of July. I am having my uterus and cervix removed for adenomyosis. I'm getting cold feet. I am tired of the painful periods with nausea. The cramps for 2 weeks before I get my period and the painful sex is really an issue. It has been a long time since sex has felt good to me that I barely remember the time when it did. Is there anyone else out there who has had the same problems and had or is scheduled to have their hyst for adenomyosis?
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Unread 06-04-2008, 02:25 PM
Seeking advice from adenomyosis patients

I have this too although not having my cervix removed. Im in your same situation. Painful cramps most of the month, very painful sex and heavy periods. My hormones are all over the place as well. Iv been battling endo and such since I was 15 and have had several laps to help clean things up which it only just comes back. Im young(going on 28) and that is another thing Im scared to death about. Just know Im right there with you. Im scheduled to go in July 2nd.
Unread 06-04-2008, 03:34 PM
Seeking advice from adenomyosis patients

Dee: I can sympathize with you. My hyster is scheduled for the end of July also. I have about two weeks of "freedom" between my 4 to 5 week periods. I just keep thinking how much better I'll be feeling after all of the surgery is done and over with!
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Unread 06-04-2008, 04:07 PM
Seeking advice from adenomyosis patients

Hi and welcome, I am not having my hysto for the same problem. Mine is because of fibroids, but I still wanted to say hello and wish you good luck on your surgery.
Unread 06-04-2008, 04:15 PM
Seeking advice from adenomyosis patients

Hi Ladies

I had my surgery just over a year ago for adenomyosis and a whole host of other concerns. It is a scary thing to think about, and the waiting is the worst of it because your thoughts race over the unknown.

When my surgery was over and I woke up in recovery I was in far less pain than when I was wheeled into the operating room. I was shocked at how much less awful it was than I imagined.

Recovery is a long process. When they tell you it takes 6 weeks, be prepared that it really is all of that, and continued caution for a while after. But as time goes on you feel better and stronger. It just takes time and patience. When we say "pamper the princess" we really mean it. It's essential to successful healing.

I couldn't be happier that I made the decision to have this surgery. I've regained my quality of life, and feel better than I have in more than 10 years. Sex is no longer painful. I don't have periods that last longer than the time I wasn't having a period. I don't feel nauseous or suffer from daily diarrhea and headaches. I'm not miserable and cranky anymore, and I am so grateful for the relief I have received. It's not all rosy all the time. I do have hot flashes and joint pain now, but it's a fine trade in my opinion, and I would do it again in a heartbeat.

Do your homework. Make sure this is really what you want. Be comfortable with your doctor and your decision, and stay positive.

Unread 06-04-2008, 04:17 PM
Seeking advice from adenomyosis patients

Hello right here...I am scheduled for mine this Friday for the diagnosis of adenomyosis, found on a MRI. The periods themself were not so bad considering the pain leading up to them. I actually only bleed 1-2 days, my doc thinks its is because alot of it is trapped in the walls of the uterus. I know what you are talking about with painful sex. The frequency has declined due to the pain, and when we do have it, the pain can linger for a few days!!! NOT fun at all. As you may have heard or read, hyster or menopause are the only "cures" for adenomyosis. That sealed the deal for me. I want quality of life. My husband wants his wife back. Its going to be OK...Good luck in your decision.
Unread 06-04-2008, 04:20 PM
Seeking advice from adenomyosis patients

Yep, adenomyosis here too. At least that is the tentative diagnosis -- will only know for sure once it's done.

So tired of the cramps, pain, and blood.

So tired.

Scheduled for 7-1, doc may have to move it to 7-8

Anyway, he wants to take it all. I am going to keep at least one ovary if it looks healthy.

Just gets to a point where anything is better than status quo.

As far as painful sex. I wouldn't know as I bleed so much, my husband has given up. He doesn't even try anymore. I'm always hurting &/or bleeding.

They are all just extra parts now anyway, I'm 47.

Can you tell, I'm SICK & TIRED of hurting and bleeding.
Unread 06-04-2008, 04:27 PM
Seeking advice from adenomyosis patients

Hi there deebee123--
Today is my one year ann. for my hyster, I had the same problems as you. I only had 2-3 days out of the month that I didn't suffer from all the problems with endometriosis. From the cramps then the problems that the pain meds gave me after my period. And I didn't ever think of having sex because it hurt so bad. I started to get cold feet and thought maybe I could just deal with the pain, but the more I thought about it and the closer it got the more I was ready for it. And believe me I am so glad I did it!!!! I'm a whole new person, everything is so much better. And the sex is GREAT.. If you need anything else let me know.
Unread 06-04-2008, 07:10 PM
Seeking advice from adenomyosis patients

DEEBEE, ahhh I remember it all too well. Adenomyosis SUCKS!!! I, like many of you, had only about 2-3 days a month that I wasn't in awful pain. When I was bleeding, and that was often, I never wanted to leave home for fear of leaving a trail behind me! On the awful days I couldn't wait for the surgery to get here. But on the "good" days I would think, you can deal with this it's not so bad. Well my last period started 15 hours before my surgery. Let me tell you it was a humdinger of a period. Probably one of the worst ones I had. I think that ole uterus knew what I was about to do to it. I was amazed that I woke up in less pain then when I went in. I wouldn't have believed it if someone had told me that was possible. Sure I had some surgical pain, but nothing like the debilitating pain before.
Hold strong, it will be okay. Living life curled up on the sofa, in pain, not being more then 200 yards from a bathroom, is no way to live life. I didn't realize just how miserable I was till it was yanked out! 4/28/06 is like a 2nd b-day for me....I got my life back. Good luck to you on your upcoming surgery, and if you need a shoulder to cry on, just let me know!
Unread 06-04-2008, 07:43 PM
Seeking advice from adenomyosis patients

I had my hyster for endo, but while they were in there they found many fibroids and adenomyosis as well. The symptoms were very similar, so when the endo was confirmed, it was everywhere and enough to go ahead with the surgery. (Guess the adenomyosis and fibroids were just a bonus ). I remember every two weeks crawling on the floor in a cold sweat seeing black spots from the pain. Sure the surgery terrified me, but I just knew I could not live in that pain for an indefinate period of time. I mean, I was actually taking 4 Vicodin almost daily for 3 full months before the surgery. That's just too much to ask a woman to bear. I am so glad I had the surgery, as I know I will not have to live like that again.

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