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Am I making the right decision? (Time-sensitive) Am I making the right decision? (Time-sensitive)

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  #1  
Unread 02-08-2014, 03:43 PM
Am I making the right decision? (Time-sensitive)

I'm 29 and believe I have adenomyosis. Hyst next month, but I'm scared bc it's only me guessing. I think I know deep down that this is the only thing it could be though?
I have had chronic severe 24/7 debilitating uterine pain for 4 years now, don't have periods (depo provera, started that After this all started). When I did have periods they were awful, big clots, and in bed for the first two days always.
This pain started after I had my son, when I stopped nursing him and my periods came back. Gradually 24/7 menstrual cramping-like pain that got worse and worse.
I believe I have done and checked out everything else:
-MRI 4yrs ago
-ultrasound 1yr ago and 4 yrs ago
-laparoscopy, only one freckle of endo removed, didn't make a difference
-Lupron --no help there
-1 year pelvic physical therapy --no help
-hypnotism
-acupuncture
-lidocaine infusion
-nerve block
-all the pain meds
Nothing works, I'm at least at a 6-8 all the time. Well the pain meds help keep it from a 10.
No gastrointestinal symptoms
Can't try a PSN bc my insurance co. is mean.
My surgeon is hopeless and doesn't know what to do with me, so I basically just have to tell her what to do and have done all this on my own initiative/research.
Is there anything I'm missing? Also my ovaries hurt (always have, esp during intercourse; uterus too), and when I have a full bladder my uterine pain hurts worse I get a sharp pain below the center of my ribs. I think just from everything getting too squished. Pushing on my uterus hurts. Imaging has been normal. My pelvic region is bloated and I'm a skinny girl.
I'm at a loss and so nervous if I'm doing the right thing by having a hyst next month. I cannot continue like this though. Pathetic excuse for a life hurting so bad and so tired all the time.
Thank you so much in advance! Sooo nervous! I wanted to have more kids but I am single, and young, and am terrified that I'm missing something.
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  #2  
Unread 02-08-2014, 03:49 PM
Re: Am I making the right decision? (Time-sensitive)

Have you gotten a second or third opinion? Perhaps a doctor who is more knowledgeable or who has more experience may be better able to help you figure out what is going on. And you say your surgeon is hopeless and you have to tell her what to do. Do you trust someone like that to do your hysterectomy? I would definitely seek the advice of other doctors before having a hysterectomy, especially if you still want children.
  #3  
Unread 02-08-2014, 03:57 PM
Re: Am I making the right decision? (Time-sensitive)

First of all I am 4 days post -op and its the best thing I ever did. I would first suggest you get a second opinion. Any time a doctor says they are hopeless and don't know what to do that's a red flag to get a second opinion. If you want to have more children this maybe a decision of a life time that will take more then a month to think about. I am 46, never had children, always wanted children, I didn't have a partner that I felt comfortable having a child with, but I'm at the point in my life that I figure having children at my age was just being selfish, and I have long come to terms with the fact that I will not have children. This took many years to deal with not 1 month. No one can tell you what you should or shouldn't do. Think about the pain you deal with day to day, the life you give your child/children now when your in pain, the life you could have with future children, and the life you could have living pain free. This is a decision only you can make and I recommend you think long and hard, seek what options are available to you. Good Luck. I hope all works out for you, and you get the answers you need.
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  #4  
Unread 02-08-2014, 04:13 PM
Re: Am I making the right decision? (Time-sensitive)

Yeah I've gotten two more opinions from other gyns, both said to get a PSN first. But I can't. Other than that nothing else advised at this point. I go Thursday to get a (diff) gyn to sign off on my hyst and I'll quiz her for sure. My gyn surgeon is good at surgery, it seems she just doesn't know what to do with people that don't fit inside of her box. Hopeless as in, she just doesn't know much and thinks Lupron is the answer to everything (never again!). Nice lady though.
I just am more wondering if there's anything else I should do/check?
I've thought about/planned for this a long time if all else failed. Now that I'm at that point I guess I'm just having cold feet :-/
But it would be really nice to know what normal feels like again, just hope I'm making right decision by having uterus and cervix removed. Irreversible as we all know
  #5  
Unread 02-08-2014, 04:40 PM
Re: Am I making the right decision? (Time-sensitive)

Sorry what exactly is a PSN? Not sure of all these abbrevations. lol
  #6  
Unread 02-08-2014, 04:51 PM
Re: Am I making the right decision? (Time-sensitive)

My Dr said its a quality of life issue. Look at my posts. I'm 11 days post op, maybe it will help. Living in pain daily wasn't for me , I was nauseated and loosing weight. I had a TVH , no other work and extensive adenomyosis & multiple fibroids. Prayers for u
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