I'm due a hysterectomy and I am terrified, how can I overcome this fear before I chicken out and cancel?

[MybosswasMrMcGee]

I've been on a year long NHS waiting list but I should be coming up to the top of the waiting list soon. I'm really having second thoughts though, I'm so so scared.

I had a uterine ablation in 2022 which has failed causing pain during every period, a MRI a year later detected endometriosis and adenomyosis so the plan is to remove the uterus due to the ablation failing and adenomyosis and then I'll also have excision surgery at the same time to remove any endometriosis.

The problem is my mental health has nosedived recently as I've been helping to care for my mum with dementia the last 8 years and it's really taken its toll on me. I panic and stress over everything recently and overthink everything.

I'm thinking all the worst case scenarios from surgery and because my ablation went wrong all I can think is knowing my luck the hysterectomy will be a disaster too. I'm so anxious that I'm close to breaking down over it all. Just can't take any more but I'm also fed up with this pain and daily digestive issues (which I'm sure are all connected). I was hoping menopause would come and it would all die down but I'm still having a cycle at 53 😢

Thank you. I do want to feel so much better than I do now I just wish I didn't have such a fear of hospitals and surgery.

I am so fed up with the pain and how (I believe) the whole issue is affecting my bowels and digestive system which actually give me more issues on a daily basis than my uterine pain but my gynae won't even discuss this as he says my gut issues are not related but all gastro tests have come back clear and I am certain there is a connection. But he says if he finds any endo on my bowel he will abandon that area and I'll need another surgery with a colorectal surgeon on hand so that's another thing to potentially stress over.

I spent my 50th birthday, in bed, crying from the pain and frustration of it all and 3 years later I am just the same. I totally understand what you went through x

That's so reassuring, thank you and good luck with your continued recovery.

Thank you. I am desperate for my uterus to go tbh, I just wish I could think past the actual surgery and hospital stay.

It sounds like this hysterectomy will really help you, please stick with it, you will be better able to cope with helping your mum afterwards as well.

Have you a date yet for the operation?

Re the surgeon, I hear what you’re saying. This is not to excuse his bedside manner, which sounds poor. However, he is there because he is skilled as a surgeon, and he specialises in doing the operation. Not in nursing or in the overall care you’ll receive when you’re in the hospital, which will be dealt with by nurses and junior Drs, who will very likely have a much better bedside manner. Your only interaction with the surgeon himself will be a quick check-in with him on the morning and a quick check-in with him post-op. During the operation, he will do what he does best and will do a good job.

I also have a fear of hospitals and surgery, I have to have regular endoscopys because I carry a rare genetic mutation that causes stomach cancer, I also have gallbladder polyps that have got big enough to warrant gallbladder surgery (which should be later this year). And I'm also under the colorectal team for bowel issues.

Endo is definitely related to bowel issues, my bowel was tethered to the left side of my pelvis, I have a rectocele, endo was on the rectovaginal wall, it was in the pouch of douglas, my bowels were tethered by endo adhesions, I had endo near the caecum, ileum which was removed, and old endo on my small intestine which the endo specialist chose to leave because it was too risky to remove.

My bowels also were the main problem, it got so bad I was manually removing poop.

The surprise was they also found endo on my ureters which was quite significant and I was having problems with my bladder but drs told me it was a perimenopause symptom, this never showed up on the MRI I had in June, so considering the damage endo was doing to my body I'm glad I had the surgery.

My bowels are still a problem but I'm using stool softeners daily and the odd macrogol sachet to keep everything moving. I see the colorectal team in June as they wanted to wait 6 months to see if the bowels begin to work normally after hysterectomy.

Its sad what endo does to us, but sometimes we have to take that leap of faith to see if surgery helps us, but it's sensible to go into it understanding that it might not resolve everything.

Its been a long 13 weeks for me, other than my bowel issues (constipation) I truly do feel so much lighter and better. And would have the surgery again (but I'd have it done in spring/ summer).

Big hugs to you🌸

I don't have a date yet, I went on the waiting list last May and at the time he told me he had a year wait.

I appreciate he is employed by the NHS for his skills and knowledge but he genuinely does not come across as a very pleasant person (I have also seen a few comments regarding him on local FB groups), he talks down to the nurses too, he is very off-hand. He's also much less off-hand when I bring DH along which I find very annoying.

My previous gynae (not an endo expert sadly) was simply lovely and always made me feel at ease throughout all of the procedures I had with him. There are 3 endo gynae specialists at my local hospital, two (including my one) have a reputation for being brusque and the other is not only one of the top endo specialists in the area but a super lovely guy too. I consulted with him privately when I first discovered I have endo and he was so kind. If he were my NHS consultant I would most probably feel a lot more at ease about the whole thing tbh.

I will have to hope and pray the other medical staff will be helpful and kind during my op and recovery although my elderly mother's recent stay at the same hospital has scarred me a little if I am honest, the care was simply dreadful. Unfortunately the hospital does not have a good reputation and has a 'requires improvement' QCC rating with an inadequate safe rating which is even more worrying when you are due an op there!

You can’t continue the the way you are so please don’t cancel the surgery. You’re likely to start feeling so much better very quickly after the surgery. My daughter had a total hysterectomy in her 30’s after suffering many years of pain, heavy bleeding and anaemia due to fibroids.

The morning after her surgery she was up and about and walking circuits of the ward and said she’d felt better than she had in years. She went home 48 hours post op and made a great recovery and has never looked back. She said the constant pain that was present for 5 years was gone when she came round from the anaesthetic. She had a large wound due to the size of the fibroid but she said the pain was minimal in comparison to what she’d previously endured 24/7.

Wishing you a speedy recovery. You’ll be a new woman 💐

@MybosswasMrMcGee It was the best thing I’ve ever done. My periods were so heavy I needed blood transfusions. My Dr. thought there was cancer so she made the incision from belly button to pubis. No cancer but lots of cysts and fibroids. I had no problems with hrt. Good luck. Maybe the Dr could give you something for anxiety?

I honestly wish it was easy for all women to have their wombs out after babies, it’s just not needed at all and can cause so much shit.

I agree with that, my two dc are the only positive thing I can say about my uterus.

Gosh yes. With my fibroids, my bulky uterus was apparently 300g when they removed it- a normal uterus should weigh 50g ish. So basically it was 6 times the size and weight it should have been. This is why my abdomen always felt so weighed down all the time and I felt so exhausted - it was the size of a 12 week pregnancy!

My doctor even told me that mine was small compared to some theyve removed at 1kg which is insanely heavy to be carrying around inside you.

Celebrate getting that thing out!!

@heavensentyouthanks for sharing, people don’t tend to talk about these things but it’s so true.

My uterus was the size of a 20-24 week pregnancy. I lost over three stone after my hysterectomy - partly getting the darned thing out, largely down to being able to exercise at last. I hadn’t been able to whilst weighed down by these awful fibroids, which also made me nervous to engage in any activity really because of all the awful flooding / bleeding.

Oh you poor thing! thats even worse than mine.

I am so happy for you that it's gone now. I fee so much lighter now and younger in fact

Absolutely, I had one giant fibroid at the top and the dr said it was the same size and weight as a 7 month baby!
I’m so glad I don’t have to go through all the issues during peri that women have with periods and pain etc, or the chance for any other type of hormonal growth or condition to happen. It’s a totally useless organ after babies

Mine was 2kg…. By the day of the op it was sticking out of my side making me feel like a mutant from Total Recall. As soon as I woke up my surgeon was there to tell me. It hadn’t been easy to remove. It wasn’t the type to affected by lack of oestrogen either, so would have carried on growing while the others (which were) shrank. I was given injections of zoladex to shut down my oestrogen supply for three months prior to shrink them before surgery. If I’d known or the consultant had known what would happen, that I’d spend those three months getting through one pack of night time pads a day and standing in the shower for hours just bleeding my life away.. I would have said no, just get it out now and he would have done so. Looking back, I feel lucky to be alive.
Please don’t worry about the operation ❤️

I’m assuming that hormonal concraception or could to stop periods has been tried and hasn’t made a difference?

Your Description of your surgeon is not unusual. There an old joke: What’s the difference between God and a surgeon? God does not believe he’s a surgeon 😁

Hey, I was reading your thread last week and now it has popped up again 48 hours after I had my hysterectomy! I am home, tucked up in bed and whilst not pain free not bad at all and mighty relieved to have it over and done with.

I think my best advice is to prepare yourself the absolute best you can going in to the operation, take some agency over your preparation then you can feel positive and that you have done your best. I've been eating really healthily (from my reading you need good protein, vitamin C and I added in extra fibre because I was a bit terrified of going to the loo after (it was FINE ). Also exercised and got my pelvic floor exercises in as apparently that helps too. I've also got the house full of healthy high protein snacks and (again) fibre to make sure it's easy for me to reach for the best food after (And obviously lovely treats because I just had surgery and therefore am very deserving of chocolate). I also packed a little bag to take in full of nice peppermint tea bags/peppermint chewing gum/peppermint chocolate etc etc and have managed to avoid any of the shoulder pain that can occur due to the extra air that goes in during surgery.

I am SO GLAD it is done. No regrets and every day I will be better than the last one and no more STUPID FIBROIDS AND BLEEDING hurrah!

Gynaecology theatre nurse here. U should really speak to your consultant. Tell her ur fears she will do everything she can to help you. If it’s anaesthetic fears speak to the consultant when he is consenting you. There is always a risk in ANY procedure that things can happen but I can honestly say in gynae hysterectomies I have seen maybe 2 in 20 years out of thousands and thousands of procedures I have scrubbed for. I promise u will never be left by yourself the whole time. I have yet to hear of anyone having a hysterectomy who regrets it (other than oncology/pregnancy issues obv).
please speak to ur gp and ask for a pre assessment and uou cannsoeaktomthe team about your fears. Just remember you are the most important person in this and the team have your best interests at heart. You are in control of it all x

I am SO GLAD it is done. No regrets and every day I will be better than the last one and no more STUPID FIBROIDS AND BLEEDING hurrah!

Yep- and even after 8 weeks the novelty for me isnt wearing off. I almost cant believe I havent bought tampons or pads in 8 weeks!! I feel so free and liberated 😍

I used to work within NHD admin, we often used that saying lol.

Not much change and I am limited to what I can take as I have a stroke risk factor due to aura migraines and lots of strokes within my family.

Thank you so much for the advice and wishing you a speedy recovery.

And FWIW, I totally agree with your user name!

My hysterectomy was one of the best things I've ever done! Hands down. No periods. No more mess, mood swings, pain, flooding etc.

And as for the surgery, I woke up the next day thinking I hadn't had it done. No pain. At all. Due to the lack of pain at any point, I went home and overdid it (on the train, into the city, shopping - I know, I know, idiot!) and then had to take it easy for a week.

It was totally life changing for me. Very very glad to see the back of my uterus!