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told I have adenomyosis...should I get a hysterectomy? told I have adenomyosis...should I get a hysterectomy?

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  #1  
Unread 06-08-2009, 12:29 PM
told I have adenomyosis...should I get a hysterectomy?

I was just recently told I have adenomyosis. My doctor said the only real cure is to have the uterus removed. The other options he had metioned one of them being birth control...I feel would only be masking the issue and will only bring on another group of issues. My back usually hurts eveyday and by the end of the day I am usually quite irritable from it. If I am sitting for a while when I stand my lower abdomen will hurt as if all my muscle are being stretched. I have lots of cramping after sex. sex hurts and my belly seems bloated and large at times. I'm not in major pain but it is something that is constantly there and wears on my physical ability to cope. I am 33 years old and have six children. I definitely will not be having anymore....
Will the symptoms of adenomyosis just keep getting worse over time?
If I have the hysterectomy he would leave the ovaries...would this still effect my hormones and cause me to go into menopause early?
I'm just not sure if I should wait to have a hysterectomy or just do it considering I am not having anymore children.
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  #2  
Unread 06-08-2009, 12:58 PM
Re: told I have adenomyosis...should I get a hysterectomy?

I had adenomyosis. I had no symptoms at all except a loong period in Jan 09 (2 weeks), then no period in Feb, then a crippling, heavy painful period in March that ended only because I was taken to the ER by ambulance because I lost half of my blood volume.

I am very lucky to be alive. If I didn't get out of bed and pass out I would have just not woken up in the morning. I woke up because I felt so much blood coming out of me, I was worried I'd mess up the bed. I had two transfusions, and was given heavy doses of progestin while they diagnosed me. I got the hysterectomy as soon as possible, but I had to rebuild my blood supply first. Being on progestin was a nightmare - I was extremely sick.

That's my experience - don't know if it will be yours, but.....?
  #3  
Unread 06-08-2009, 01:09 PM
Re: told I have adenomyosis...should I get a hysterectomy?

If your leaves your ovaries the likleyhood of you going into early menopause are slim. There is a chance that your ovaries will not "wake up" after sugery but I believe the chances are very slim of that. Even if something happens and s/he has to take one of them it will function just fine on it's own. There is a post floating around this board about the chance being 50% that your ovaries will fail after your hyster. You could go a few pages back and look for it if you would like.

BTW, some Dr's say that 50% is too high of a percentage of ovarian failure.

to you while you make this very important decision!!!!!
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  #4  
Unread 06-08-2009, 04:07 PM
Re: told I have adenomyosis...should I get a hysterectomy?

I also have been told I hav Adno. My doctor and I have tried everything, I've done the birth control which didn't ever really work, I had an endrometral ablation, and it didn't work. I am 29 with 3 kids and would love to have another, but had such bad pregnancies that m ever getting preganant again would endanger me, but more importantly the baby, so I choose to get a tubal at the same time as the ablation. My symptoms are the same as your, but I've seen what can happen if you let Adno go for too long. I remember being in the mall with my mom and having her drop a clot the size of a tennis ball that went right through all her clothes. We had to leave very quickly and I don't ever want to have to deal with that. So here I am. I am a bit worried about going into menopause early, but I will just have to burn that brdige when I get there. Am I scared, yes I am, but I know I'm making the right choice for myself and my family.
  #5  
Unread 06-08-2009, 07:59 PM
Re: told I have adenomyosis...should I get a hysterectomy?

Thanks eveyone for your responses....I think I am going to go ahead and tell the doctor that I will have the surgery...I dont see the purpose in waiting for it to just get worse. I am already very irritable from the symptoms I have now. It is hard to manage my family of six children under 8 feeling the way I do. You all have been helpful
  #6  
Unread 06-09-2009, 12:26 AM
Re: told I have adenomyosis...should I get a hysterectomy?

  Quote:
Originally Posted by fep View Post
I also have been told I hav Adno. My doctor and I have tried everything, I've done the birth control which didn't ever really work, I had an endrometral ablation, and it didn't work. I am 29 with 3 kids and would love to have another, but had such bad pregnancies that m ever getting preganant again would endanger me, but more importantly the baby, so I choose to get a tubal at the same time as the ablation. My symptoms are the same as your, but I've seen what can happen if you let Adno go for too long. I remember being in the mall with my mom and having her drop a clot the size of a tennis ball that went right through all her clothes. We had to leave very quickly and I don't ever want to have to deal with that. So here I am. I am a bit worried about going into menopause early, but I will just have to burn that brdige when I get there. Am I scared, yes I am, but I know I'm making the right choice for myself and my family.

Your story sounds so much like mine. I am also 29 with 3 children and had difficult pregnancies. I had a laproscopy/hysterscopy on 5/8, uterine ablation and tubal ligation. My doctor thinks I have adeno. I have a boggy uterus, constant back pain and leg pain. Im tired all the time time. I never really stopped spotting after the ablation. Matter of fact I just had a period on 5/31 and Im still bleeding ( lightly). My dr has basically told me Lupron shots or hysterectomy. Im having an extremely hard time dealing with all of this. Can I ask how your experience with the ablation was? Im wondering if the ablation has failed?
  #7  
Unread 06-09-2009, 06:42 AM
Re: told I have adenomyosis...should I get a hysterectomy?

  Quote:
Originally Posted by joluree View Post
Your story sounds so much like mine. I am also 29 with 3 children and had difficult pregnancies. I had a laproscopy/hysterscopy on 5/8, uterine ablation and tubal ligation. My doctor thinks I have adeno. I have a boggy uterus, constant back pain and leg pain. Im tired all the time time. I never really stopped spotting after the ablation. Matter of fact I just had a period on 5/31 and Im still bleeding ( lightly). My dr has basically told me Lupron shots or hysterectomy. Im having an extremely hard time dealing with all of this. Can I ask how your experience with the ablation was? Im wondering if the ablation has failed?
I had attempted to get my ablation twice, during the first attempt, my doctor perferated my uterous, and so she couldn't do it because it could have caused damage to other organs, she said that the uterin wall was so weak from the constant bleeding it just popped at the begining of the surgery. She followed through with the tubal and told me to give it 6 weeks to heal and we would go back and do the ablation. So 6 weeks later we got the ablation done. It was pretty quick and pain free, after the ablation things got better for a short time, I wasn't really bleeding, but just spotting here and there like you, well now it's been a whole 6 months and I'm back to bleeding. Sex is extermly painful and it's causing major problems in my relationship with my husband, which is crazy, becuase sex is the only thing we ever fight about. He wants it all the time and I never do, but he doesn't understand why. He knows about my issues and I guess he just doesn't care, but that's another issue entirely. I was really hoping the abaltion would work, but it didn't. It has a huge success rate, but it just didn't work for me. So here I am facing a hyster, and I, like you, and having a very hard time dealing with it. There are so many "can happens" that it's just felt like the weight of the world is on my shoulders and my mom doesn't really understand because she was over 10 years older than me when she got her hyster, so... I hope I helped, if you have any more questions, ask. I understand what your facing and how hard it is, believe me, but I really feel like I have no other choice!
  #8  
Unread 06-09-2009, 10:04 AM
Re: told I have adenomyosis...should I get a hysterectomy?

Hi. I just figured I'd add my 2 cents. I, too, was told I had Adenomyosis. I had gone to the Dr with a stress incontinence issue, but he right away noticed my large boggy uterus. I have always had long, heavy periods that I just figured was normal (for me at least). I had tried al least 5 different BC pills, none of which could control the bleeding, so I never knew when I was going to start spotting, or when my period would end. 7,8,9 days never could tell. My husband used to think I used having my period as an excuse not to have sex, but that was never the case. I did have better luck with the Mirena IUC. I could have gone on with those for the next 15-20 years, but I chose to remove the problem altogether. I had a TVH with bladder sling and perenium repair all done together on May 4. I am VERY happy with my decision. My doctor said that it was my decision on how it affected my quality of life. If you are having a lower quality of life because of your adeno, you should go ahead.
As for the ovaries, I, personally haven't had any problems with hormones since surgery. Also, if there are not other issues, you should be able to have your surgery done vaginally--the recovery is MUCH easier since there are no abdominal incisions. For me it was the best choice. Best of luck to you!
  #9  
Unread 06-09-2009, 08:34 PM
Re: told I have adenomyosis...should I get a hysterectomy?

Because of adenomyosis, I ended up very anemic and had to have a blood transfusion. I had my surgery on May 1 and I am very glad I did.
  #10  
Unread 06-09-2009, 10:04 PM
Re: told I have adenomyosis...should I get a hysterectomy?

Hi Revivalworld,
I too was told I had adenomyosis....this was after having a 65 day period!!! Followed by an endometrial ablation...that worked for 2 months only to be followed by another 64 day period!!!(Thats enough to make anyone crazy!!) I always wanted children...but didn't get married till I was 42...and unfortunately it never happened. I ended up having a TAH on March 9th and it really was the best decision for me. What I tried to do was make a list of all the pros and cons of having the surgery or not having the surgery...honestly ....there were no advantages to keeping my uterus....as it was basically a non-functioning uterus(to have kids)...and all it did was bleed!!!
I didn't have to have my ovaries removed....thanks be to God...I really can't say that I have felt much in the way of menopause symptoms as of yet....perhaps just a bit of dryness when having sex....but there are other ways of dealing with that!! Good luck in whatever decision you make...I can tell you...its great not to be anemic anymore, not to worry about needing "a change of clothes"....and all that goes with it!!
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