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 for this.

I have told my gynae all of my fears but he just brushed over them, he really is not personable at all which is half the reason I am so fearful, there is another specialist there who has a fantastic reputation, sadly I am not his patient (he is so popular his waiting list is around 2 years long). I know that I would be feeling a lot more confident about the op if he was my surgeon.

It is reassuring that most of these ops go well but I suppose my confidence has been shaken due to the ablation I had in 2022, that has been such a huge regret of mine and I just don't want any more regrets over medical decisions and as I say, my gyane isn't the type of doctor you can have these kind of conversations with, he just dismisses everything I say.

What is the worst that will happen? My surgery was quite complicated and I had secondary complications but I still felt 100% better than I’d felt for years, even on the day after surgery. I had a longer recovery time and couldn’t lift much for over 3 months but I felt so well.
Go for it: the worst outcome is so much better than you are feeling now. My mental and physical health improved in a day.

My MRI stated 'deep' endometriosis and diffuse adenomyosis. I am not concerned about the adenomyosis because that is easily resolved by the removal of the uterus.

The endometriosis concerns me. Despite having gynae and digestive issues for 25+ years and being under the same gynae department for the last 12 years I was only diagnosed with the endo in 2023, at the age of 50 and that was only due to my insistence that I have a MRI because the uterine ablation had failed. Without my insistence of the MRI I would still be none the wiser. The very late diagnosis in itself has reduced my confidence in the department.

I have tried explaining to my gynae my concerns regarding my daily digestive issues and have asked repeatedly if they could possibly be connected to my endo but he dismisses me each time (actually waved his hand in my face to try to stop me talking). I feel that he has contradicted himself by telling me my gut/gynae issues are not connected but at the same time tells me that when he goes in to do the op (I am also having excision surgery for the endo) and he finds bowel endo he will stop the op and I will need to have it done at a later stage with a colorectal surgeon there too.

I worry in case he nicks or catches my bowel area whilst performing the hysterectomy (my MRI does show some areas of adhesions), I do not want to end up with a bag, temporary or otherwise or a worsening of my current digestive issues which are daily and controls my life atm.

Six years ago my sister had a supposed simple endo op (same hospital trust) which should have been an hour or two long but she ended up in surgery for over 7 hours and was very poorly for a while, that has stayed with me and frankly scares the shit out of me. I can't help it, I am super scared.

I had one removed more years ago than I care to remember. It was such a joy to be rid of the blight on my life that my uterus had become - my life was transformed.

You really do not need to worry about the anaesthetic - I promise you it is fine. If you are very nervous about it you can ask for a happy pill to help you on your way.

Truly, it will be fine.

According to AI there are 150 hysterectomies performed in the UK per DAY! I think the surgeons and anaesthetists have pretty well got this sussed, so do not worry. It is bread and butter to them.

I'm awaiting a hysterectomy as well. I've been bleeding for a year, sometimes haemorrhaging and ending up severely anaemic. My uterus is full of fibroids (too many to count apparently), the largest the size of a mango and several tennis-ball sized. I'm currently on Zoladex injections which have induced a medical menopause to try and shrink things before the op. I am in horrific pain most days and a shadow of myself. I'm also a carer for a parent with dementia. This last year has been horrific.

I'm still terrified of the op however. I'm sure life without my uterus and fallopian tubes will be infinitely better than the existence I'm enduring right now. But I'm scared of the anaesthetic, worried because they don't know how complex the surgery will be, scared of recovery, psychologically worn down by my own reproductive system trying to kill me and so much so that I can't believe that the surgery will be straightforward.

On a sunnier note, somebody posted on here that 75% of women have bacterial vaginosis post hysterectomy which I found alarming because I hadn't read that in the novel of risks my gynaecologist gave to me. I've researched a bit and found this: "overall post-hysterectomy infection rates (including cuff infections) range from 3% to 10%". I'm determined to stop spiralling!

We will be fine.

My heart goes out to you. I am sorry you are on this journey too. I find it so hard not to feel petrified also, I do have a tendency for overthinking!

If you ever want to PM for support whilst we wait this, please know I'm there if you need to.

On a sunnier note, somebody posted on here that 75% of women have bacterial vaginosis post hysterectomy which I found alarming because I hadn't read that in the novel of risks my gynaecologist gave to me. I've researched a bit and found this: "overall post-hysterectomy infection rates (including cuff infections) range from 3% to 10%". I'm determined to stop spiralling!

I saw that post and it's alarmist BS. Studies do NOT show this whatsoever

Its just scare mongering and attention seeking.

I wasn't trying to be alarmist, that's what the nurse practitioner told me when I went to see her. I thought i was being helpful in as to say not to worry about post op infections because a lot of people get them and they're really easily treated.

Not everyone has a text book hysterectomy, some of us have complications, I think it's fair for people to go into a major operation knowing as much information as possible, sadly I was too scared to look up the complication side as I'm quite frightened of hospitals and surgery, i'd only read positive posts and that gave me an unbalanced view. And as a consequence I suffered infections far longer than I should've because I thought the infections were a normal part of healing.

All of my posts come from a place of wanting to be helpful and to be as balanced as possible.

And as for attention seeking, I don't think so!

Hi, I also just had abdominal with removal of fibroid and endometriosis too. I'm Day 12 and still in alot of pain. Is this normal? I'm on maximum painkillers