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 😢

Sorry to hear that youre having such a difficult time, it sounds like you've had an awful lot to deal with as well as you're own health issues.

I had a hysterectomy after having years of pain, massively excessive bleeding and a failed ablation so fairly similar issues. It was 100% the best decision ever and I've never looked back! The recovery from the operation took a while but was nowhere near as bad as I thought. I was up on my feet 24 hours later and home after 2 nights in hospital. My quality of life is so much better now and it was the best decision. I couldn't have carried on like I was, sounds like you might also be in that position?

If youre really worried, can you have a chat with your gynaecologist and/or anaethesetist? Both mine were lovely and really reassuring. Try not to google too much though!

Aw bless you.

I had a total hysterectomy 7 weeks ago for fibroids/endo and constant heavy bleeding causing me to become anemic.

Best thing I ever did! operation was easy- went home the same day. Just had to rest properly for 6 weeks and no pain at all really, just felt slightly sore.

This is first time since having my kids I haven't had a period and it's BLISS. I am now on HRT patches and feel great. You will be fine - think of how wonderful it will be not to put with all your current annoyances.

This operation sounds like it is going to change you life for the better.
Why not have a little affirmation that you use when you start to feel like this. The alternative is years more of the issues you are currently dealing with.
Anemia can also cause low mood. Is it possible you are anemic?

Excellent point - anaemia can cause anxiety too, it did for me

I had a hysterectomy last summer for fibroids and it was the right decision. I was driving after 4 weeks and healed really well with no complications the peace I get from having it all gone is lush

Thank you so much, your issues do sound very much like mine are atm. I know that I can't go on much more, I've actually damaged the skin on my stomach because I have a hot water bottle clamped to that area almost 24/7. I suppose it's the anaesthetic that I am most concerned about, I have chosen to have all of my medical procedures via local because I am so scared of a GA, even though some of those procedures were really painful!

Perhaps I should ask if I could talk over my concerns with an anaesthetist?

Oh that's really reassuring, thank you.

Tbh, I would be more than happy to see that back of my uterus, it's not been much of a friend over the years but I just wish it wasn't such a big op.

Was the pain afterwards manageable?

I do need to get myself into a more positive frame of mind over it all, I have been focusing way too much on all the negatives and spending too much time reading the literature my gynae gave me regarding all the things that could go wrong!

Regarding anaemia, I was very low on iron stores for 8 years but ended up with iron infusions before the ablation and now I no longer bleed each month my iron levels and stores are all normal thankfully.

That's so good to know, thank you.

Please don't change your mind- I had a hysterectomy in my late 40s and it was the most liberating thing! Yes you have to get over the op but you know it will get better and better. I had a vertical incision due to a huge fibroid and even so, I was only in hospital 4 days. I can't honestly say I had any real pain, I came round with a morphine pump in situ and when it was taken out after 24 hrs, I was given paracetamol and voltarol and by the time I got home I didn't need pain relief. I have never looked back. Think of all the money you'll save not having to buy tampons/towels.
I was signed off work for 3 months but honestly I could have gone back after 6 weeks but I had an excellent sickness record at work so I thought I'd make the most of it!
A year later I had an operation on my foot and my goodness, the pain was awful. The hysterectomy was lots easier in comparison.

You have absolutely got this, you can do it, you’ve got it in you to get it done and get through it and live a pain-free life on the other side.

I had a hysterectomy just over a year ago for fibroids and excessive bleeding and anaemia, and I have not looked back.

The recovery was fine. I was in hospital for one night and I walked out fine. I was back on the school run within a week. Do remember, the fact you’re in such pain and discomfort now basically means that you have developed a high pain threshold. My recovery pain was really nothing to write home about. I spent two days in bed, but was able to get between the bed and the bathroom with no help, and paracetamol kept on top of any twinges. I enjoyed having the rest to be honest and was able to read and watch telly. It was very nice in a way 😂 Also the bliss of not bleeding!

Please get this done, it will make your life much better. Also, make sure to get HRT even if they leave your ovaries in. Really good luck.

November 2023 - life changing! My life is no longer ruled by sanpro, flooding, pain and lugging around fibroids the size of tennis balls. Recovery was ok, just pay attention to what they tell you re aftercare. Mine was done laparoscopic and my tiny scars from that have disappeared.
Just a note on anemia. Even though you won’t lose much blood for a hysterectomy, they do do a full blood work up in your pre op appointment so do try and build up your iron stores while waiting for that.

I was late 40s when I had mine. For years previously my heavy bleeding was treated with a blood clotting drug and the scan showed fibroids but I was told not to worry as they would shrink when I went through the menopause. Once I was too old to have children, hysterectomy was discussed. I was not offered any other option except sitting and waiting. Over the course of five years one fibroid grew to the size of a small melon and the bleeding every day meant that I stood in the shower for most of the morning, washing away clots and crying. I’d been put on iron supplements but fainted regularly. I had the hysterectomy done privately in the end. All out because I had cysts on the ovaries as well and I couldn’t wait for the nhs. I did have a pelvic organ prolapse unfortunately but this is being treated and I am able to live my life. The anaesthetic was fine. The pain was not bad enough while healing for me to ever regret having this done. I got my life back. Please don’t be scared. You won’t regret it ❤️

I had one - best thing I ever did - and mine was a full sunroof job, not a keyhole one. I was sore for a week or two but nothing that paracetamol couldn’t take care of. I had been signed off work for 10 weeks. I felt fit enough to do some work at home by 6 weeks (I didn’t though) and was fully ready to go back by nine. Don’t think about the operation - think about how you will feel a few weeks after. It will make such a difference to your life (and just in case you were worried, the romance department is as good as it ever was - just make sure you get on the HRT 😁).

Hi,

I can completely empathise with you. It's a huge operation and is going to take a while for recovery.

I'm 13 weeks post op and it's been a heck of a journey. Everyone's journey is individual.

I had a tough time, i ended up with a bowel blockage 3 days post op and 5 weeks post op I had a uti caused by the catheter, and 7 weeks post op I ended up with bacterial vaginosis! So recovery for me has been rough.

But I've got a good husband and daughter who looked after me, and are still looking after me.

To begin with it felt like i was in shock, and having an out of body experience, i don't think I was prepared for the enormity of the operation, cognitively I understood, but psychologically I wasn't prepared.

I went straight into menopause and the nightsweats were horrendous for 6 weeks as the hrt i was on wasn't strong enough. I'm now on evorel conti and ovestin vaginal cream and I'm so much better. So make sure you have your hrt sorted out.

But now 13 weeks out, I'm happy that I've had it done, my recovery is longer than most due to complications, but I no longer have the horrid perimenopause to go through and I feel calmer and more at peace too.

I do still have fatigue, I had a lot of endo to excise (stage 4). And have had everything removed. I was terrified of bursting stitches, i was terrified of everything! But I'm now just starting to do some strength training and walking up to an hour a day. I've also slowly got back to my normal routine with the only things I'm not allowed to do is hoovering and lifting heavy shopping bags.

I am very unfit so that has also had an impact on recovery.

Please don't be afraid, you'll be fine. Your operation will hopefully be in spring, so you'll have nice weather while you're recuperating. I was very nervous and cried a lot before my surgery, I was so scared, but honestly, I've barely cried post surgery, even though I've had complications, I've just got on with it.

Tips: make sure you're not constipated, if you are, tell the anaesthetist and the consultant pre surgery.

Buy some nice loose fitting night dresses.

Big pants and pads, you will have some light bleeding and discharge after surgery.

Take a book/ puzzle to keep you entertained.

Pack a couple of juice cartons and some mints for the trapped wind.

Be prepared to give yourself blood thinning injections, I had to do mine for 10 days.

You will need to wear compression stockings after surgery.

And do literally nothing for 6 weeks post op, other than walking, resting, showering, and lifting nothing heavier than a half filled kettle, your job is ready and recover.

I wish you all the best❤️

You've got this🙌 xxx

If you have any questions feel free to ask xxx

Thank you all for your advice and reassurances.

Lilmisspeacekeeper
I’m sorry you had such an awful experience and glad it turned out ok in the end but if I’m honest it’s experiences like yours which really put me off going through such a big op like this, I’ve struggled so much with my mental health recently that I honestly don’t think I’d be strong enough right now to go through something like that, I’d end up having a breakdown, I’m sure.

You're right to go into it with an open mind that things can go wrong.

If you don't feel mentally strong then have a chat with the consultant and put your operation on hold for a few months.

Like I said everyone's experience is their own, you might have a text book recovery.

Only you know what you can cope with right now. Have you tried GNrH analogues? They help some women.

Whilst hysterectomy won't cure endometriosis if the endo is excised and fully removed there's a small chance of it returning, however hysterectomy will cure the pain from adenomyosis.

75% of women will get bacterial vaginosis from hysterectomy, it's a common complication caused by the cleaning the vagina to remove the uterus, a course of metronidazole got rid of the infection, and i supported my flora with probiotics.

A uti is also very common after catheterisation, 3 days on antibiotics cured the uti.

If the surgical team had given me an enema, I wouldn't have gotten a bowel blockage, you'd have thought they'd have treated me in a&e but after 16 hours in a&e they sent me home with painkillers.

I was treated 2 days later in the gynae assessment unit, the nurses were shocked that I hadn't been treated in a&e, I was told it should never have happened. I'd like to think that I'm the unfortunate one that ended up with a tough recovery.

Also having the operation in winter wasn't great, when i went to a&e it was full of people with flu and norovirus.

If i could do it again I'd have my operation in spring/ summer, as there's less sickness in the hospitals should you need to go in with complications and every operation has risks.

Talk to your consultant about your worries and you can also talk to the pre op nurses.

Definitely not to minimise your fear because I remember feeling the same but mine was only about a 1.5 hour procedure and I was home that evening watching television with my feet up. I was fortunate with a good recovery though I appreciate everyone is different. Please try not to worry as you are in the best hands and if I can help with any answers I please do message. Good luck

I'm hoping I can talk to someone but it won't be my consultant, it's almost impossible to get an appointment with him and he's not an easy man to talk to, he always talks over me and has zero bedside manners which is one of the other reasons I'm so apprehensive to have the op, if my consultant was more personable I may feel more at ease but there are only 3 endo gynaes at our hospital and the others all have very long waiting lists (as he does) and the next endometriosis specialist hospital from me is over 40 miles away so I'm kind of stuck.

Thank you so much.

I would say I didnt even have any pain. When I woke up from the anaesthetic I had what felt like a bad period pain ache, they gave me some morphine and then I felt really happy lol.

After that wore off I didnt feel anything at all really, just slightly tender in that area as you would expect. I've had stubbed toes or paper cuts that were worse in terms of actual pain than this was. It was honestly not a big deal at all.

Its sad when gynaes are like that, we're literally putting our bodies in their hands.

To be honest I had very little to do with my consultant, he booked me in for a hysterectomy, I then waited 6 months for surgery, 2 weeks before surgery I had another appt which to be honest he just kept smiling and saying I've got a good team around me and I'll be OK.

When I saw him again on the morning of surgery I broke down and said I was scared, he told me again I'd be OK and I've got a good team around me. The anaesthetist seemed a bit off with me and I felt very much like a number rather than a person.

The nursing staff were amazing they held my hand and were so calm and gentle with me.

As soon as the madazalam went into the back of my hand I was so calm and happy, I remember nothing from that point.

I was in surgery for 5 hours, I was taken onto a ward where I stopped in for 1 night and was very well looked after by the care staff. I was up and walking and released the next day.

I continued to walk around the house regularly to prevent blood clots, i was walking up and down the stairs and having a shower after a couple of days.

I will say that if there is a gynae assessment unit at your hospital make sure you have the number incase you have any worries or complications as there is very little aftercare that comes from the consultant. I had to rely on my GPS for checks and any aftercare I needed after my operation. My GPS resolved both infections, they did the wound checks, they gave me the correct hrt and they also checked my vaginal vault as the nhs offers no aftercare for women post hysterectomy, nhs policy is that if we have a problem we'll go to them.

You've waited so long for your operation, I really hope you find a way to do what's best for you.

This time last year I was in so much pain I was bloated, I felt like I was dragging a bowling ball around in my pelvis, I couldn't enjoy my 50th birthday because I felt so ill, so fatigued, my body felt like it was 100 years old and the hormones due to perimenopause were making me feel like I wanted to die. I wasn't living I was existing. So yes I had complications, would I do it again? Yes because now I feel mentally and spiritually stronger and physically I feel better than I did.

I truly wish you all the best❤️

Had mine 5 weeks ago. Pre op had fibroids, adenymyosis, anxiety, debilitating pain and had been bleeding for 43 days including big clots.
48 hours of pain killers post op and I was back to my old self. None of the above exists anymore. I am happier than I was expecting.

Having my womb out was the best thing I did, kinda felt like freedom to really live how I wanted. Recovery took a few weeks and that was full abdominal. Honestly there have been zero negatives.. no periods, no pain, no pregnancy risk, no complications during peri etc