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Adenomyosis - anyone else "diagnosed" with this? Adenomyosis - anyone else "diagnosed" with this?

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  #11  
Unread 10-06-2011, 01:16 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

My cramps can be toward the sides too.. at first I was not this bad but after having to wait 5 months to see a surgeon it has got to the point of all the time. In fact I just called the office and they put me on 800mg of motrin 3 times a day...like that is really gonna help...
I know that some people do not have cramps at all...
we are all different...
Glad to see you have a date that will not make you wait too long...
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  #12  
Unread 10-06-2011, 01:35 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

My prayers are with all of you. The symptoms are not easy to live with. You are correct moat people don't understand they just think oh you are just having a bad period. This is not true.

I made the decision to have a di Vinci full hystorectomy removal of it all. The abdominal pain is gone, back pain gone and everything else is getting less. I have three beautiful sons and I feel blessed. This all came at a cost, I couldnt work for last few months in and out of the hospital.

I wish all of you luck and prayers.
  #13  
Unread 10-06-2011, 03:40 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

Adenomyosis is a real bit of a bummer and with it, no matter how much pain you are in, you will always question whether or not you are doing the right thing. So few women go into the surgery knowing totally if that is what you have since the diagnosis is so intrusive. The fact is though, you are in pain and bleed a lot and for that alone you should be treated. The type of treatment really depends on your personal circumstances. If you want more time with your uterus there are options and if you're done then go for the hyster.

I was diagnosed with adeno but I never had anything to do that other than the symptoms. I spent much time thinking whether or not I was making something out of nothing but honestly, there was a lot going on with my body. I had the bad pain in my abdomen, huge blood clots, continuous bleeding on no particular schedule, back pain and leg pain, urinary and bm irregularity.

I am 4 weeks out now and I have absolutely no regrets. Even if they had told me that my uterus looked good I would still be fine having done it. All of the pain is gone, no more bleeding, energy level is so much better. Turns out I did have adenomyosis and pelvic congestion syndrome (varicose veins around my uterus and ovaries) which was a complete surprise. Doctor told my husband he knew why I was in pain.

Bottom line is do your research and when you feel peace with your decision you'll know it was the right choice. It's tough but you're pain is real. As sad as it sounds, before all of this went down, I would have never been able to relate to the pain some women have to go thru until I went thru it myself. Just do what you have to do for you and your health, don't worry about the others.
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  #14  
Unread 10-06-2011, 04:25 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

My doctor diagnosed me with adenomyosis after my hysterectomy July 20. I didn't have the heavy bleeding since my cervix was scarred shut from a LEEP procedure. My doctor prescribed continuous birth control to stop my period and yet the cramps and pain continued every single day all day month after month. It is hard that we go into the surgery assuming a diagnosis which can't be confirmed until later. It's a leap of faith. My big fear was what if I have the surgery and the pain is still there? We had no solid guarantee of what was causing it. I'm at 11 weeks and still sore but I'm starting to get glimpses of a pain free life.
  #15  
Unread 10-06-2011, 04:30 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

They determined pelvic congestion with me via ultrasound; adeno is only suspected at this point. My doctor indicated that it's not uncommon for both to be present. How long did you have to wait after your hyst in order to get that diagnosis? Was that known through observation alone or thru biopsy? Sooo anxious to have this behind me. :\
  #16  
Unread 10-06-2011, 05:29 PM
Adenomyosis - anyone else "diagnosed" with this?

  Quote:
Originally Posted by kbid View Post
They determined pelvic congestion with me via ultrasound; adeno is only suspected at this point. My doctor indicated that it's not uncommon for
both to be present. How long did you
have to wait after your hyst in order to
get that diagnosis? Was that known
through observation alone or thru
biopsy? Sooo anxious to have this
behind me. :\
Generally they'll tell you at you post op once they get the labs back but in my case it was pretty obvious. They never saw my pelvic congestion on the ultrasound.... Not until surgery. That's the thing about the ultrasound... It doesn't always tell the whole story. It can come back saying things were just mildly bad and turns out it's a whole different issue inside.
  #17  
Unread 10-06-2011, 06:23 PM
Adenomyosis - anyone else "diagnosed" with this?

  Quote:
Originally Posted by kbid View Post
They determined pelvic congestion with me via ultrasound; adeno is only suspected at this point. My doctor indicated that it's not uncommon for both to be present. How long did you have to wait after your hyst in order to get that diagnosis? Was that known through observation alone or thru biopsy? Sooo anxious to have this behind me. :\
My doc told me about the adeno at my 6 week post op appt. He had to wait for the pathology report. It wasn't obvious to him visually.
  #18  
Unread 10-06-2011, 06:46 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

I was just diagnosed too. I have pelvic pain every day. It feels like my uterus is gonna fall out! No pains meds help and sometimes I'm in a ball crying it's so bad. Does anyone else have pain besides that which comes with a period? My periods are bad too. Bleed right through those super tampons. I have never heard of this before so it's hard to wrap my head around it all.

Going back to my doc next week to ask more ?'s and possibily schedule a LSH. When I explain to people what I have they don't understand. They are confused about a hyster being the solution. Makes me second guess what's happening with my body. It just stinks that the only way to feel better is to do the surgery. But the pain I have from this makes me just want to do it and get it over with.

Hang in there everyone! Hugs!
  #19  
Unread 10-06-2011, 07:44 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

I have pain everyday too and it has nothing to do with my periods because I haven't had one in over two years, since I had the Mirena IUD put in. OB said I have vericose veins on uterus. Have Pelvic Congestion Syndrome. Had pelvic vein embolized. Didn't help at all, in fact, the pain got worse after that! MRI says adenomyosis. We will find out tomorrow! My primary referred me to a counselor cause she thinks its all in my head! My mom is pretty much the only one that has believed me through all this and been supportive and an advocate for me. She knows what its like to have an invisible illness. Just can't wait for tomorrow to be over! I'll be sure to update my results.
  #20  
Unread 10-06-2011, 08:36 PM
Re: Adenomyosis - anyone else "diagnosed" with this?

I had that too, I think. The doctor said it looked like it I had it when we did an ultrasound. That doctor moved and I had to get a new one. He's who gave me the surgery. He didn't say there was anything like that or not when they actually got in there. Either way, I'm four weeks post-op tomorrow and I'm starting to feel really good. This is the longest I've ever gone with out a period in 25 years. The pill, an IUD, progesterone cream, nothing has helped. I'm very glad I had this done.

Good luck to you all!
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