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the adenomyosis treatment dilema the adenomyosis treatment dilema

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Unread 04-22-2002, 04:48 PM
the adenomyosis treatment dilema

Hi, this is a great web site. I am 41 years old and was recently diagnosed with adenomyosis. I have enlarged uterus (12cm), heavy bleeding, backpain, cramps, and fatigue! Two ultrasounds did not show fibroids, just large boggy uterus. I have had two consults with my ob/gyn and he has given me treatment options. I tried BCP for one month only and ditched them because I was getting constant headaches, nausea, mood swings. So when I went back to see the ob/gyn, he did talk about other options such as lupron (which I quickly eliminated), but he has also suggested hysterectomy as an option. We scheduled a date for June 18th for TAH and now I am having second thoughts. Everything I read seems to indicate it should be avoided at all costs. I am not really sure why? Satisfaction among women who have had it seems high. So should I give BCP a better try than I did first time around? He said he gave me the lowest dosage so switching probably wouldnt help the headaches. The other thing I am worried about is if my ovaries shut down anyway, then I will be on HRT, which could also give me headaches. So do I endure, or go for the hysto? My doctor is leaving is up to me, I wish he would just tell me what he thinks I should do!
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Unread 04-22-2002, 05:01 PM
the adenomyosis treatment dilema

Aw, sweetie, I know how you must be feeling! Hysterectomy is a major surgery and, in my opinion, a major life event! Not to be decided hastily.

I think you are very smart to look into your options and to reconsider options you have already tried, thinking realistically and how these options did/will affect your life.

I didn't think there was a way to really get rid of adeno other than removal of the uterus. If you do decide to have a hysterectomy, research the possibility of keeping your ovaries, too; discuss this with your DR in more detail, even though some DRs are very non-committal when asking "What should I do?" Check out this from

and also do other searches to learn more about your diagnosis and conditions.

I wish you all the best as you make this very important decision; please know that we are here for you in whatever you decide!

Unread 04-22-2002, 05:02 PM
the adenomyosis treatment dilema

Hi and welcome to Hyster Sisters!

I cannot tell you what you should do, but I can tell you that you have gone through a good deal and most of it I went through as well.

I went and saw 4 doctors for opinions before I had surgery. I was put on Premarin and Prempro last year, underwent 3 u/s. They thought I had fibroids, I had adeno. You can see in my signature all the problems they found during surgery.

I would suggest that you arm yourself with information, have you read the pull-down menus on the main page yet? Use the search feature here on the message boards as well. There is also a forum for alternatives to hysters. You may want to read the posts there. I would like to also suggest you have more than one opinion, this is your body and you don't want to have surgery if you don't have to!

Please let me know if I can help in any way!

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Unread 04-22-2002, 05:38 PM
the adenomyosis treatment dilema

I agree with Criss and Sara. It is a decision only you can make. Take your time, read all the info you can on the site, come into chat for extra support and even pray for the best answer for you. It is true though that the only cure for adeno is a hyst. I wish you luck with your decision and either way do what is BEST for you. Take care..........

Emily s
Unread 04-22-2002, 11:09 PM
the adenomyosis treatment dilema

Research is the best answer for you. Then after you do your will have an inner voice to help you make the best decision for your body. Remeber you aren't alone.
I am 26 and had adeno among other problems...
I had your same awful symptoms. I chose to have a hyst because there was nothing that could cure adeno other than the surgery. I looked at all the options and felt it would just prolong the inevitable. But that was my choice and we all have to do what we feel best.
Good luck and take care
Unread 04-23-2002, 08:26 AM
the adenomyosis treatment dilema

Hi. I'm glad I found you all. After several sonograms - maybe those are fibroids and maybe they aren't and are there one of two?- the GYN says I have Adenomyosis. A name for the pain! Glory!

He outlined my options. I'm 39, have a 16 yr. old and done having babies. BCP just seem like a nonstarter. I don't need my skin to clear up; I need the pain to stop. And the Lupron seems like a temporary fix, not a long term not to mention the bone loss issue. So option 3, a hysterectomy seems like the best option for me. Now when do I stop crying? And why am I crying? I can deal with six weeks off work. I can actually work from home after I start to feel a little better. My ovaries are fine, so they'll stay. The GYN says my uterus is about twice the size it should be so a vaginal surgery is not an option for me. I had my daughter by c-section so I know what the recovery will be like.

So questions. Can you have a hysterectomy with out removing the cervix or is that part of the package? And what about sex? Has anyone completely lost their desire? I don't think I'm feeling like I'm losing "my womanhood" but maybe that's why I can stop crying. (Of course the stabbing pain may have something to do with the crying.) And please someone tell me you have a throbbing sensation, almost like contractions or spasms. My DH can even feel them (the spasms) when I place his hand on my lower abs. It's driving me nuts - thump, thump.

Thanks for listening!

Unread 04-23-2002, 09:52 AM
Treatment Options

Greetings! Hope I don't sound like a broken record with these posts on adeno, but I am fortunate to have a doctor in Richmond, VA, who is noted somewhat as being an "Expert" in this area. I try to share the five years worth of experience I have with him on this subject whenever I think it will be helpful.

As everyone has told you, adeno does get progessively worse, and all the treatment options can really do is buy you time, if you are unsure of the diagnosis or want to have more children. Pain relievers can work wonders, but eventually, it comes down to what my doc calls a "quality of life" choice. And a very personal decision.

I will say that my doctor probably does lean toward a surgical option if that seems suitable to the patient, though he is not a hysterectomy "pusher." His feeling is that adeno is a disease, and since the tissue will continue to grow, the uterus becomes a diseased organ. I am also choosing to have everything else removed except for the cervix. It was my decision to keep it - pap smears detect cervical cancer early and you can lose quite a bit of blood if it becomes hard to get out. There are also some opinions out there indicating it may help with sexual response.

I will tell you that I am having a hard time getting my HMO to approve my TAH scheduled for 5/6/02. I am 43, and though married, have no kids, so I "don't fit the profile." That's hideous, because if I wanted an abortion, I could get one. So I agree there is a bit of a "controversy" out there but my personal feeling is that it has more to do with an uninformed opinion than anything else. It should be up to the individual doctor/patient/personal choice.

OK. Off my soapbox. Good thoughts your way!

P.S. Yes, the pain often does mimic labor pain due to the tissue overgrowth causing the equivalent of "uterine contractions"
Unread 04-23-2002, 04:25 PM
the adenomyosis treatment dilema

Its so nice to know that the throbbing - spasm feeling is not weird. Very techincal, huh? What amazed me was when I called today to schedule my hyst, the doctor had actually recommended a TAH. Now why didn't he tell me that? I left the doctor completely confused and feeling like if I went for the TAH that I was coping out and not trying other options.

Unread 04-23-2002, 04:47 PM
the adenomyosis treatment dilema

Bat, my dr. said I have adeno so I have the same pains you do. It's like I'm going through pregnancy, PMDD, and labor all in the span of two weeks. It's horrible and I can tell you, I know it's gotten worse just in the last year. My uterus is up to 11 weeks and after I ovulate, I even have to sit with my legs open to give my belly some room. I've tried several different bc pills and depo. bc pills gave me headaches and vomiting and depo made me bleed for three mos. straight. My dr. finally did an u/s last November and suggested a hyst. I am scheduled for June 7th and it's not soon enough. I am keeping my ovaries(hopefully). After I made the decision, I've tried to tell myself maybe I don't need it, but then the pain and discomfort come back and I want to run to my dr. and have him do it right then. I just think it is time because I am mentally, physically and emotionally tired of dealing with being "sick" all the time. I'm worn out.

Good luck to you and hope you find the peace of mind to deal with your decision.
Unread 04-24-2002, 06:10 AM
the adenomyosis treatment dilema

Hi: I just wanted to answer your question about keeping your cerivix if you have adeno.

Well I kept mine, we thought I might have adeno prior to my surgery, but got the dx after.

I chose to keep mine, Dr. said it was fine as long as I didn't have endo and pap smears were good.

I had a laproscopic supracervical (kept cervix and ovaries) and have been doing 110% better since. No more pain, even my back aches are gone.

I have not had any bleeding other than the cervix healing within 2 weeks of my surgery..that healed and no bleeding since, I have cycled and still no bleeding.

I think you should do as much homework as you possibly can, I was originally going to have the LAVH, until I started reading and chose the LSH instead.

My only problem was the adenomyosis, I didn't have any other this was a pretty straightforward surgery.

It is still major surgery though and like any other hysterectomy you do need to give yourself that time to heal.

Take Care.

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