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Upcoming hysterectomy 6/21: What can I expect?  Anyone else with a hysterectomy for adenomyosis? Upcoming hysterectomy 6/21: What can I expect? Anyone else with a hysterectomy for adenomyosis?

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  #1  
Unread 06-14-2016, 03:21 AM
Upcoming hysterectomy 6/21: What can I expect? Anyone else with a hysterectomy for adenomyosis?

Hello sisters!
My big H is quickly approaching and I must say I am very excited yet much more terrified. What should I expect? Are my emotions going to be out of wack? Will I feel supported (emotionally)? Plus about 100 other questions/worries that are going through my mind.
This will be my 5th surgery in 3 years. I had 2 ablation surgeries for ovarian cysts and Endometriosis, 1 excision surgery, then another excision surgery that was on February 23rd of this year that consisted of 3 uterine biopsies/ botox injections (for PFD)/appendectomy/pudernal nerve block. My 3 uterine biopsies came back positive for Adenomyosis SO my jusband, my surgeon and I all agreed that a Hysterectomy would help my health. Its been a crazy 3 years to say the least!!!
In addition, we don't have a lot of family support. This makes me much more sad but I am extremely happy cause I have many loving and supportive friends. With that being said, I would love to hear some positive stories & words of encouragement! Any sisters with Adenomyosis???


Thank you sisters!

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  #2  
Unread 06-14-2016, 07:42 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

Hi AmandaZocco to HysterSisters!

I am so glad you found this site!

Your mix of emotions is very normal - this is one difficult surgery to face and digest. Emotions after this surgery can run the spectrum and everyone is different. You indicate that you are keeping your ovaries, so that should help. They sometimes get sleepy after the surgery until they get used to the diminished blood supply.

Keep in mind that this is MAJOR SURGERY. No matter how they enter your tummy, you will have much internal healing to do. Recovery takes time - think weeks and not days. You will need time off work - again, think weeks and not days. You will need help at home with cooking, cleaning, dishes, laundry, shopping, driving, etc. You will not be bedridden and you will be able to do minor items around the house, but you will still need to rest much.

Just know that you are not alone in this - we are here for you and understand what you are going through.

  #3  
Unread 06-14-2016, 08:28 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

My hysterectomy was for suspected cancer, but I ended up being diagnosed with endometriosis and adenomyosis during my hysterectomy. The good news is that hysterectomy is the cure for adenomyosis, so all your symptoms associated with that disease should go away including passing clots, having an enlarged uterus (mine wasn't), and some of your pain. However, a hysterectomy will not cure endometriosis. It will stop the bleeding and any pain associated with the endo implants on the outside surface of your uterus; however, any endo left behind on body surfaces like the bowel, bladder, and body cavity may still cause problems after hysterectomy. My gyn/onc had the skills, training, and resources to excise all the endo implants. If your doctor does not have the skills to excise all your endo implants, you may need to seek out an endometriosis specialist in the future to have them excised and hopefully put an end to your endometriosis symptoms. I felt much better just a week or so after my hysterectomy - except for the hormonal issues from not being able to save an ovary. As (((marestail))) said, your ovaries may be sleepy so you may have a few menopause symptoms, but nothing so drastic you cannot deal with it. I was just so happy to get some relief from the pain and bleeding. I did have some discharge/light spotting off and on for about six weeks, but nothing a panty liner couldn't easily handle. I did get some swelly belly, and I just accepted it as a part of healing. I found that I got tired easily and did a lot of napping. It was definitely the right choice for me. I hope you feel much better afterwards.
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  #4  
Unread 06-14-2016, 08:35 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

Hi Amanda I had a D & C 2 times and biopsy for adenomyosis last one March of 2016. I had already gone through Menopause and started bleeding in December 2015 couldn't get it to stop Dr put me on Megace no help at all. We opted for Lav/bso I was so anemic I was relieved but scared at same time. In March when I had D & C and biopsy I had a tachycardia attack while under I have heart condition so my cardiologist has to be at hospital when I h ave surgery. Then they couldn't stop the bleeding and when I woke up told the Nurse I was going to have a major asthma attack only when I started wheezing my husband said better listen to her and sure enough I had to have on g breathing treatment. So you can see why I was scared. My hysterectomy was on 6/6/16 everything went good no tachycardia I did bleed badly and no asthma attack. I was in no pain just hated the cath and my back ached . I didn't need a y pain meds at all after surgery and stayed the night . They took cath out 6 in morning Dr came at 7 I was doing great went home at 10. I am 8days post op a feel great only problem I have is awful gas. Good thing I did total hysterectomy my left ovary was enlarged both ovaries had cysts both tubes were congested my cervix had cysts and my uterus was size of 4 month fetus and the adenomyosis was worse than Dr thought. So my next hurdle is I can't take Hrt because of family history of breast cancer a d my lumpectomy 5 years ago. So I am on pins and needles for pathology report in 3 weeks. Sorry so long don't want to scare you but my surgery went good so I thought I would share my experience. Good luck!!!
  #5  
Unread 06-14-2016, 08:50 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

Hi! I just had a partial hysterectomy for adenomyosis. I already feel better honestly. They heaviness is gone, even though I am swollen from the surgery. Mine was 6/6/2016 just a week ago. I am already up and about, although really over did it today. Exhausted and s
Pet 13 hours. My skin looks better, leg does not hurt anymore and ultimately I think worth it. Good luck. Sleep a lot before surgery, take your vitamins and rest rest after, one of the best things I did was to load up a rolly cart next to my bed before I went to surgery with literally anything I might need afterwards; pain meds, water bottles, snacks, hard candies, underwear, pads, tissues, a bell ( to ask for help) - that did not go well with the family but I actually ended up using it to help me get out of bed.
I have lots more weeks of recovery and am exhausted but feel younger oddly even with night sweats. I had really under estimated how hard it was to carry around that enlarged and full of adenomyosis uterus !
  #6  
Unread 06-15-2016, 12:20 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

OMG We are almost identical in stories AND we are having surgery on the same day. I could not believe it when I came across your post. I have suffered with Endo for over 3 years now and during my last lap (the 3rd) they did a biopsy that tested positive for Adeno.
Anyway, keep posting if you want to. I'd love to have someone to go through this with. My surgery is scheduled for 7:30am June 21st.
  #7  
Unread 06-15-2016, 02:07 PM
Re: T- Minus 7 Days...What can I expect? Anyone else with a hysterectomy for adenomyosis?

  Quote:
Originally Posted by AmandaZocco View Post
Hello sisters!
My big H is quickly approaching and I must say I am very excited yet much more terrified. What should I expect? Are my emotions going to be out of wack? Will I feel supported (emotionally)? Plus about 100 other questions/worries that are going through my mind.
...
In addition, we don't have a lot of family support. This makes me much more sad but I am extremely happy cause I have many loving and supportive friends. With that being said, I would love to hear some positive stories & words of encouragement! Any sisters with Adenomyosis???
and !

You've been through it, girl! I had my procedure for fibroids, and an incidental finding was <drumroll> adenomyosis. Didn't even know I had it. The pressure on my bladder is gone-gone-gone, and no more heavy cycles.

Surgery and recovery is different for everyone. In general:

Surgery probably 2-4 hours and your surgeon plus a team of experts will be there to assist and monitor you; you'll be under general anesthesia so you'll go to sleep, wake up and it's done! About an hour in a recovery room (I have one fleeting memory of that) and then on to your assigned room. I'm guessing you'll stay overnight in the hospital as most women do. They'll take good care of you there.

Once released, expect to be tired . Rest a lot. You'll be tired. That's true of any hysterectomy. Did I mention you'll be tired? Stay on top of your pain meds initially, take them on schedule - if the pain gets the upper hand once you get home, it's a little more difficult to beat it back down. You'll be sore, but with the meds it's bearable (if it's not call your doc). It's good to walk up and down the hall, but mostly rest and drink plenty of fluids. Usually after a week, you can walk a bit more. There might be swelling, bowel issues (mainly a backlog if you know what I mean ), but stick with this site and you'll get all kinds of support and advice, including from women who have surgery the same day and week.

Emotions - probably will be out of whack whether or not you keep your ovaries (if you keep them, the surgery puts them to sleep for a while). I cried over TV shows that weren't tear-jerkers! It's okay, and you'll balance back out. Talk to your doc about whether HRT would be an option if you'll be in surgical menopause.

We don't have any family locally either. I prepped about 9 freezer meals in advance (clean eating/paleo rather than casseroles which are awfully rich after abdominal surgery). It kept me busy so I wouldn't jump out of my skin beforehand! And then church, work and friends came through! Didn't have to get the first freezer meal out for a week. If folks ask how they can help, let them know how - an errand, meals, pet sit, whatever! Folks are delighted to help.

I hope this begins to put your mind at ease. Best wishes and see you on the other side!
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