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Adenomyosis and hysterectomy Adenomyosis and hysterectomy

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  #1  
Unread 04-16-2012, 07:48 PM
Adenomyosis and hysterectomy

I was referred to this thread by a good friend of mine. I am stilltrying to navigate and hoping this is the right thread to be posting this one. I have been seeing a dr. For six years that would not help me. I went to a new PA today and I have an appointment in May to go over a hysterectomy and what it all entails. My new doc uses the da Vinci. I am like all of you, I was so excited to hear that FINALLY I can stop suffering....but yet I am scared too.

Has anyone known anyone that had the da Vinci surgery? Or has/had adenomyosis? I get terrible cramps and random horrible bleeding from it. It use to just be very bad during my cycles but now I have spotting throughout the month and horrible episodes during it too, my latest was while in the office. I am scared and happy....imcannot wait to see the dr. But then hope it is the right decision. The thought of leaving the house worry free just sounds so great to me right now!!!!
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  #2  
Unread 04-16-2012, 08:22 PM
Re: Adenomyosis and hysterectomy

I am having a DAVH April 30 so can't give you results but I also have adenomyosis and have been suffering for years I felt so alone until I found the sisters here.
I hope you find reading the posts of the others helps you as it has me.
  #3  
Unread 04-16-2012, 09:03 PM
Re: Adenomyosis and hysterectomy

Thank you for the response. Can I ask, how long did it take the doctors to offer you a hysterectomy? Did your problems happen throughout the month? I have just felt so alone for so long it is nice to finally have people to talk to!
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  #4  
Unread 04-16-2012, 09:08 PM
Re: Adenomyosis and hysterectomy

It took about 7 years before they would talk about it being an option, and 3 years to get it approved once the doctor decided it was necessary - but I go to the VA and this is seen as an elective surgery and they still are not totally up to speed on women's health.

I have had increasing bouts of bleeding, and cramping like when I was a teenager.
  #5  
Unread 04-17-2012, 01:06 AM
Re: Adenomyosis and hysterectomy

Good luck with your op. I had been complaining to my GP for years about the bleeding and cramps and everything nasty thats associated with Adenomyosis. Only being referred to a gyno for something else did he pick up on my condition. Within two months I had my Hyster. I am now 3 weeks post op. Everyone I have spoken to about it say it's the best thing they have ever done. I can't say that just yet but I hope to be one of those ladies soon.
Good luck and Blessings
  #6  
Unread 04-17-2012, 05:42 AM
Re: Adenomyosis and hysterectomy

Desperate01
I have been suffering for years without really saying anything as I hate doctors. I went 5 years ago and my regular ob/gyn sent me to a specialist he did a lap and diagnosed the adno. He told me straight out the only CURE was a hyst. I continued to suffer because I was scared of such a scary surgery. About 3 months ago my pain was so bad my DH (wonderful guy) talked me into going for a second opinionas he could not watch me suffer any more.
She told me about DaVinci and I agreed and scheduled for April 30.
Yes I have started to have pain all month long and I am always bloated grrrr. I just can't wait for it to be over!
This sight is what is getting me thru
  #7  
Unread 04-17-2012, 06:09 AM
Re: Adenomyosis and hysterectomy

  Quote:
Originally Posted by desperate01 View Post
I was referred to this thread by a good friend of mine. I am stilltrying to navigate and hoping this is the right thread to be posting this one. I have been seeing a dr. For six years that would not help me. I went to a new PA today and I have an appointment in May to go over a hysterectomy and what it all entails. My new doc uses the da Vinci. I am like all of you, I was so excited to hear that FINALLY I can stop suffering....but yet I am scared too.

Has anyone known anyone that had the da Vinci surgery? Or has/had adenomyosis? I get terrible cramps and random horrible bleeding from it. It use to just be very bad during my cycles but now I have spotting throughout the month and horrible episodes during it too, my latest was while in the office. I am scared and happy....imcannot wait to see the dr. But then hope it is the right decision. The thought of leaving the house worry free just sounds so great to me right now!!!!
I had DaVinci April 4 for Adenomosis. I'd be happy to tell you whatever you want to know.My pain and bleeding got worse over time eventually making it impossible to have any quality of life at all. After the last three years of almost constant pain and bleeding for 10 days straight every other week, so glad I had the hysterectomy.DaVinci recovery is not the walk in the park they advertise it to be though. It's a great procedure for sure, but recovery for me so far has seemed the same as other types of hysterectomies that ladies have posted recovery updates on here about.
  #8  
Unread 04-17-2012, 06:13 AM
Re: Adenomyosis and hysterectomy

grannykat - so sorry it took so long for you to get treatment. I was thinking 6 years of run around was a lot.

Kelliea5 - thank you for the information. I have one friend that went through this quite a few years ago and she says the same thing. It is just getting the doctors to understand how horrible this is. To even get them to acknowledge it. I have tried everything from BCP to meds to stop the heavy bleeding and nothing seems to work. I now feel nauseous most of the time and get crampy just about everyday. Moody -- were you moody?????

Kris B - So your surgery is coming up soon - my prayers are with you that you will get the much deserved relief I have read about. My meeting with the Dr. is in May. I am hoping they can schedule it pretty quick for me so I don't have to ponder it forever. I am also always bloated. There are very few days a month that I can move my rings. I am also wicked moody and nervous everytime I feel anything that it is happening again. I was mortified when it happened at work at day 12. That is not the norm for me, I generally tend to get a lot of spotting but not that.... that is reserved to those miserable days once a month.... and now all I can do is worry it will happen again. I also get cramping like I am going to be sick and sometimes spotting after but most of the time nothing..... I am also like you, the only one I have talked to is my one GF that lived it and my husband. I was even red yesterday telling the new PA about it.
  #9  
Unread 04-17-2012, 06:18 AM
Re: Adenomyosis and hysterectomy

  Quote:
Originally Posted by cathb911 View Post
I had DaVinci April 4 for Adenomosis. I'd be happy to tell you whatever you want to know.My pain and bleeding got worse over time eventually making it impossible to have any quality of life at all. After the last three years of almost constant pain and bleeding for 10 days straight every other week, so glad I had the hysterectomy.DaVinci recovery is not the walk in the park they advertise it to be though. It's a great procedure for sure, but recovery for me so far has seemed the same as other types of hysterectomies that ladies have posted recovery updates on here about.
Mine started after having a partial molar pregnancy 8 years ago. I had one successful pregnancy after that but as soon as the baby was born it started back up again. Heavy clotting, heavy bleeding - TMI I know - then I started getting sick with it, sick to my stomach at first - now I get the diarrhea cramping and sometimes spotting, most of the time nothing. I get terrible rectal pressure during my cycle too, to the point it hurts to sit down.... does this sound like what you went through? Now I am having midcycle bursts and it is unsettling to say the least. I know I want it to end it is just hard when they cannot say for sure what it is until pathology after the surgery.... I know in my heart what it is but when you have a dry day you second guess yourself... then AF hits again and you wonder why you again waited.... is this all normal
  #10  
Unread 04-17-2012, 06:46 AM
Re: Adenomyosis and hysterectomy

I remember your frustration oh so well. No diagnosis until pathology. When after my hyster my doctor confirmed the adenomyosis I was so relieved. I kept thinking during the weeks prior to surgery that if it wasn't Adenomyosis maybe I was getting a hysterectomy for nothing. My pain and bleeding worsened gradually for 10 years, then drastically the last 3 years. research Adenomyosis more. after a lot of research you'll pretty much know if that's what you have. Everybody is different, remember, but their is strength in numbers. What tests/diagnosis has your doctor made?
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