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Please help calm my fears Please help calm my fears

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  #1  
Unread 10-23-2021, 09:39 PM
Please help calm my fears

Hello, I’m new here and I’m sure this post I’m about to make isn’t new to you all…. But I’m scared. I have been told by my dr I should think about having a hysterectomy due to probable adenomyosis. I read all the horror stories about hormonal changes, bladder changes, weight changes etc and it scares the crap out of me. I see posts on here from women who are several years out and still having problems. What if I am making a huge mistake? I worry I should just live with the pain because atleast I KNOW what it feels like. The fear of the unknown is killing me. Any words of advice would be greatly appreciated.
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  #2  
Unread 10-24-2021, 04:39 AM
Please help calm my fears


When I was told that I needed surgery for a grapefruit sized fibroid pressing on my bladder, my research began by reading a book from a doctor with an anti-hysterectomy stance, who was describing all the awful things that would happen, too detailed and too scary to discuss here, and it scared the crap out of me. Fortunately, I've always been one to see both sides of the story, and once I spoke to my doctor, and sought out more factual information, which included this site, I came to recognize that this was my best option, and that my surgical team would do everything they could to ensure a positive outcome. Your ovaries might shut down temporarily, after their main blood supply - the uterine artery - has been severed, but in the vast majority of cases, they're able to find an alternative blood supply and resume normal functioning within a few weeks; I had blood tests done at 2 weeks post-op that showed that mine were functioning normally. My bladder was a lot happier without that large fibroid sitting on top of it, and my surgeon had a cystoscopy done to make sure that everything was okay. If you're not sure that this is the right decision for you, then you can always seek out a second opinion; if you do decide on surgery, then I suggest staying away from all the Negative Nellies out there, and stick with us to get the real deal on how it will go. Best wishes for whatever you decide!
  #3  
Unread 10-24-2021, 05:45 AM
Please help calm my fears

Thank you so much for your reply and for sharing your story. It definitely helps to hear from people who’ve had good experiences!
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  #4  
Unread 10-24-2021, 07:35 AM
Re: Please help calm my fears

The first reaction is often one of disbelief and worry about all the negatives that 'everyone' seems to know. It's also worth noting that while there are very real risks of complications, they are relatively rare compared to the numbers having the operation.

This site is a mine of information that you can work through to find out more about different types of surgery and decisions on keeping ovaries etc that can make a difference to your risk profile.

It's a worldwide resource where people searching for answers can crowd-source them from a group who have gone through the op - and likely experienced every combination of diagnosis, op and recovery. That means that those with problems often find their way here - whether they are days, weeks, months or even years after surgery. Those who heal well often stop coming to the site as frequently, if ever.

You can see this in the recovery threads. They start with frequent posts as we all ask questions and reassure ourselves that what we're feeling is normal. As the weeks go on, they ease back to occasional check ins as people get back to their lives.

If it's any comfort, when I decided on mine, two older friends confided in me that they'd had one at a similar age (20 and 30 years beforehand). Knowing them now, and the range of activities they enjoy, I'd honestly never have known.
  #5  
Unread 10-24-2021, 04:18 PM
Re: Please help calm my fears

it's a scary decision to make but you can do a lot to help make the decision easier. do a lot of research (research removing cervix, ovaries) and decide what kind of surgery you want. do you want to keep your cervix? are your ovaries healthy and is your dr going to remove them (research this a lot)? get multiple opinions. when I was getting ready for my surgery, most dr's I went to wanted to remove my healthy ovaries and cervix...I would never allow that. I had my surgery in 2006 and it's one of the best things I ever did and I have zero issues.
  #6  
Unread 10-24-2021, 05:41 PM
Re: Please help calm my fears

  Quote:
Originally Posted by Colleen0524 View Post
Hello, I’m new here and I’m sure this post I’m about to make isn’t new to you all…. But I’m scared. I have been told by my dr I should think about having a hysterectomy due to probable adenomyosis. I read all the horror stories about hormonal changes, bladder changes, weight changes etc and it scares the crap out of me. I see posts on here from women who are several years out and still having problems. What if I am making a huge mistake? I worry I should just live with the pain because atleast I KNOW what it feels like. The fear of the unknown is killing me. Any words of advice would be greatly appreciated.
Colleen,
You have come to the right place for info and support, I wish I had found it pre surgery. It is normal to be scared, when my doctor told me I should consider hysterectomy plus repairs I sat in my car and cried for an hour. You will read a lot of "horror stories" because those that had no problems were too busy enjoying their lives to write anything or look for help.
Only you can decide if the pain you are currently experiencing is something you can continue with. I had a prolapsed uterus, cervix was fused and masses on ovary. The physical pain and worry about cancer was overtaking my life so I decided to have the surgery. The unknown is always scary but arm yourself with as much info as possible. Recovery is hard but I am in much less pain than I was before and am looking forward to all the things I can do once I am completely healed. Pathology report was good so I don't have to worry about that. I had a different cancer 5 years ago so I don't believe in ignoring health issues.
If you are already dealing with constant pain than you are obviously a already a warrior. Please post and ask for help as much as you need, we are here for you!
  #7  
Unread 10-24-2021, 08:29 PM
Re: Please help calm my fears

Thank you all so very much! I can’t tell you how much you all have helped me with just your words of wisdom. It has helped settle me quite a bit. I will definitely do some more research but I do feel more at peace about it already. This website is a God send.
  #8  
Unread 10-25-2021, 03:11 PM
Re: Please help calm my fears

Yes, you will read posts from women who are having issues and women who are seeking support for other issues like menopause and hormones. What you don't read are the posts from women who healed completely and got on with their lives... because they don't have a need to post! Of the 600,000 women who have hysterectomies annually, there's not many hanging out here. Dom Mel is right - you probably talk to women daily who've had this done and you just don't know it.

My surgery was textbook, so was my recovery - no complications*, no setbacks. I could've been one of those who disappeared into my happy life, but after getting so much info here about recovery, it's been my desire to stick around and walk alongside women making this decision and going through the healing process. *I did have an adhesion which led to some abdominal surgery 7 months ago, likely the luck of the draw - very bad luck - but I'm able to share that experience too. There's life after a hysterectomy. I'm doing more these days than I did pre-op, and I'm also back to the things I was doing prior to my most recent surgery.

Having said all that, it is major surgery, and I think you understand recognize it. We do encourage women to get a second or third opinion if it helps them decide. I highly recommend Our Booklet which starts where you are now and goes through 6 weeks post-op, even touching upon a year later.

If this is the path you'll be going, our Preparing for Hysterectomy page has links to articles and the Pre-Op forum where you can ask questions. Many women (me included!) say that the nerves and anxiety while waiting is worse than most post-op concerns. Once it's done, you can focus on healing.

No matter what you decide, we're here to support you.

  #9  
Unread 10-26-2021, 05:22 PM
Re: Please help calm my fears

Overall the abdominal hysterectomy recovery was not bad. The worst honestly was the swell belly & constipation. I had pre cancerous cells & fibroids along with a 10 week sized uterus (which was a surprise). Im having issues now due to possibly h-pylori bacteria, small hernia & esophagitis. I can tell you - get a support band! I got one off amazon. And the peri bottle - the warm water helps tremendously to get that bladder going. I wasnt prepared for pretty much having to sleep on my back in a sitting position in the bed for 7 weeks but managed. I too was scared, never having children or any surgery to be in the hospital overnight for a few days. And bc of covid restrictions, visitor was limited. I wish you the best. You GOT this!!! Its a personal journey that I think almost everyone’s experience is the same yet different. Keep us posted!!
  #10  
Unread 10-26-2021, 07:29 PM
Re: Please help calm my fears

I had a hysterectomy 2 years ago at the age of 44. Everything went as it was supposed to and I had no issues. I started light weight training at about 8 weeks and moved forward and have had no issues. My situation was strange as everything was set up and I had it completed within one and a half months. Was I scared? Yes, but I used this site and did my own research and tried to prepare myself as best I could. I absolutely loved the maternity gowns and robes. That is all I wore the entire time. Well, those and my stretchy panties. I bought 2 sets and alternated them. Make sure you have help. I tried to do this alone and had to reach out for help. Try to get as much information on the type of surgery you are having and what to expect. DON'T TRY TO DO ANYTHING TOO EARLY!! I cannot stress this enough. Give your body time to heal and you'll be back on your feet in no time. Best of luck to you!
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