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Anyone else in this alone?  Adeno, endo, and cysts Anyone else in this alone? Adeno, endo, and cysts

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  #1  
Unread 02-01-2014, 04:09 PM
Anyone else in this alone? Adeno, endo, and cysts

:newYes! I've battered cysts for 20 years now. Had 3 laparoscopies to remove cysts and endometriosis, have had 5 or 6 cysts rupture. Been on and off Lupon and provera. Keeps coming back worse! Went to a specialist who sent me to an endocrinologist - he tested for adenomiosis (spelling) and it's pretty bad. Total hysterectomy and oophrectomy is scheduled for 2/5. Can't wait. My big fear is being intimate afterwards. My fiancé left me in the middle of all of this - guess he wasn't in the mood for for better or worse!! But I'm just about to turn 40 and the emotional fears are what I'm worried about. Any advice? Anyone else in this "alone". I am thankful and so grateful for wonderful friends and family - what a wonderful support system - but fears are still strong.
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  #2  
Unread 02-01-2014, 07:01 PM
Re: Adenomyosis AND Endometriosis?

ALONE!
I am alone to deal with my situation. Here are my details....
I was diagnosed 9 years ago with Endo on my Right Ovarie. I am fairly sure after going to follow up appointments, the ER surgeon did not know much about the disease, once found in one place, stop looking. After a month I refused to go back and see him so I sought out Reproductive Health Centre. (Immediately I was put on provera, untill that completely stopped working about a year ago.) Another 5 months later I was in for another Laproscopic surgery, and the endo was found on both ovaries, bladder and bowels. I had same surgery again 2.5 years later. and then another 2.5 years after that. 4 total so far.
Its been almost 3 since the last surgery. I am in agony again. When I hit the 9 year mark last Sept, I decided I wanted this horrible cycle to end, as my life stopped over and over. Also a couple car accidents contributed to me concluding a 9 month pregnancy would physically destroy me and not only would I not be able to care for myself, I wouldn't be able to care for a child.
The pain has become severe very quick over the last two months while waiting for Hysterectomy. I wanted to keep my ovaries in case I decided to do surrogacy later.
That changed again, after an ultra sound 2 weeks ago, surgeon isn't sure if I had a cyst burst or if my ovaries are just that much the problem and they have to go to. Now Everything is being taken.

I have never heard of Adenomyosis until about 20 minutes ago reading this. I have fears about the menopause already... Never even thought of prolapse until reading that here too. I don't know if I should be bringing this up to surgeon. I am in for the surgery in 10 days.
Annnd I am single and live alone. I have friends that can stop in but not someone with me 24/7 and that scares me as well.
Anyone that can share or pass on some suggestions?
  #3  
Unread 02-02-2014, 11:06 AM
Re: Anyone else in this alone? Adeno, endo, and cysts

Hi Scalds -

I am sorry your fiance left you and that you are now alone. We have had other women recover alone from this surgery. Hopefully one of them will see this post and respond. Here is also an article that may help:
Living Alone and Recovering from Hysterectomy

Regarding intimacy afterwards, this is is different for everyone. For some it is better, and for others its is worse, and everywhere in between. For me, sex feels different and my orgasms are not as intense (I miss the muscle contraction), but they are more frequent.

Do know that all of your fears, emotions, nerves and freakouts are very normal. We understand what you are going through and are here for you.

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  #4  
Unread 02-03-2014, 11:39 AM
Re: Anyone else in this alone? Adeno, endo, and cysts

I'm doing this alone... BF bailed, he was concerned how it would 'feel different' after the surgery...I'm a bit more concerned about myself so I just waved as he left - I'm being scheduled for TAH, multiple fibroids, severe cervical dysplasia and urterine polyps. Received my diagnosis - was told hysterectomy October 28th.. I am still waiting for my surgery date though.. I think this will be tough, my closest family is 3 hrs away, I'll have my mom here for a couple days after the hospital stay, but other than that I'm on my own.. scariest for me at this point is 1) I live upstairs..so no way around the stairs .. and 2) I have a ginormous dog.. thankfully super large backyard, so I'm not worried about walking him.. but will I be able to let him out into the backyard with doing the stairs numerous times a day...?? Also nervous about sex after.. but with no one to do that with, I'm happy for less stress!!
I hope your surgery and recovery go smooth!
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