Hysterectomy in a few months, so scared that I'm talking myself out of it - can anyone offer advice?

[Redsparkleydeeleyboppers]

I don't know what to do to get myself through it.

I know people go through much much worse and some women have no choice but to have the surgery but after being on a waiting list for 14 months I had shelved the worry but since my pre-op last week I've been in such a state mad have made myself feel like a bag of crap.

I suffer from anxiety in general and have bad health anxiety and hospital fears. I'm thinking of all the worst case scenarios which has absolutely NOT been helped by someone on our local towns FB group today asking about waiting times for a hysterectomy at our hospital and someone replying that they wish they'd never had the op at our hospital as they have since suffered ongoing issues which they described as being 'traumatic and catastrophic' which frankly has scared the fuck out of me.

I don't necessarily need the op but having suffered from gynae issues for decades and discovering that I have adenomyosis following a failed uterine ablation 4 years ago with dreadful pain at each period (53 but STILL having a cycle) and possible endometriosis my endo specialist has suggested having everything removed (uterus, ovaries, cervix) etc. This obviously reduces any uterine cancer risk because the ablation means if I were to be unlucky to get uterine cancer I wouldn't bleed post menopause so it could go undetected for a while so having it all out now would be a positive and reduce that risk but my fear of surgery, going under a GA, worrying about possible infections such as sepsis, potential blood clots and just coping with the pain and recovery has sent my fragile mental health on a downward spiral.

I do have a telephone appointment with my gynae tomorrow to discuss my worries but he has zero bedside manners and I can't imagine him having much empathy for me.

I'm not due the surgery until end of September/beg October which gives me time to either talk myself out of it or find some kind of therapy or something to be able to think rationally. I'm ND and don't always think clearly and my mind always thinks the absolute worst, always.

Has anyone had this surgery and if you were terrified like me how did you get through it?

I had a hysterectomy at 48 (so nearly 20 years ago now) after decades of terrible gynaecological problems and severe anaemia. It transformed my life.
Yes it is scary and I was very anxious but am still grateful today after all this time that I managed to go through with it.
Ask if you can have it done with spinal anaesthesia rather than GA - much easier to recover from in my experience, particularly if you’re having it done via vaginal/laparoscopy route.

Be brave, I wish you the best of luck.

Best thing I ever did
I had endo, adenomyosis and also a failed ablation.
I was 39, now 55

I had a radical hysterectomy at 28. Some 30 plus years ago! It was the best decision of my life. I would do it again without hesitation. Zero regrets or complications.
DH said I walked in like a little old lady and walked out as someone under 30.
it did take several weeks to be back to fighting fit but I had a very physical job. Within 48 hours I was up and walking around the ward and doing stairs etc. Perfect time for you to plan all those books to read and tv shows to binge watch.
Surgery is scary, but you will be in good, experienced hands.

Hi, I had a hysterectomy 4 weeks ago with ovaries removal. I won’t lie to you, it’s not been easy - despite having it done by laparoscopic surgery, I ended up needing oxygen, transfusions, haemoglobin, tranexemic acid etc. I then had a post op infection with fever and needed further antibiotics. I am 51, in good health and do not have any risk factors.

Four weeks on, I still feel weak and a little bit sore. My surgeon is happy with my recovery, I am doing pretty well. I don’t mean this to put you off - I have no regrets about getting it done, but it really is a major procedure and you need to rest for an extended time. I have found my recovery is not linear - some days I feel good, but the next day I’m exhausted and just need to rest.

I think it’s hard for most of us to imagine a situation where we just can’t get out of bed out of exhaustion - so you need to adjust your expectations. Healing takes time and energy.

I'm actually wondering whether I should have had it for some gynae issues some years ago, because the issue is they could come back, and while you're right surgery is a big deal, the younger you are, the healthier (often) you are, and quicker to recover, less at risk of infection. And maybe some other women on here can confirm-presumably you can go on HRT straight away with less risk of complications, because you won't have to take as many medications?
So maybe just thinking it could be a good thing to get it over with now, so you can get your life back, and line up friends to come round to visit?

I had it done 10 years ago as I was struggling with bad PMT mood swings. Best thing I ever did. No more periods, pills, moods etc and apart from the odd hot flush I’ve had no issues since.

Will it be laparoscopic? If so it’s a piece of cake, I was sore for about 24 hrs and then fine. I’d had a caesarean so was nothing compared to that.

Laparoscopic hysterectomy with just spinal is very much the exception to the rule - and needs a pretty chilled out customer. Spinal can be combined with GA though if it’s likely to be complex as it can help with pain relief. Vag/open hyst under spinal is more reasonable but still not wildly common.

Life changing for the better and recovery so much easier than I thought. I was up and walking about by the evening on the same day. Didn’t need pain killers apart from para and ibuprofen. Really not a problem. Just remember that you don’t know the health status and general fitness level of unknowns who comment on forums. Please do not get in a tizz - the worst thing is the sgoulder pain from the air they pump you with. Good luck.

I had open surgery full hysterectomy aged 38, that was nearly 15 years ago. I felt like I had been run over for about 2 weeks, then felt tired for another couple of weeks.

No recovery issues, no complications, it was all very straightforward and such a relief to have done it and not have to worry anymore.

It is natural to be worried as it is a huge surgery but it is also very routine.

Thank you everyone, so good to know that most of you had positive experiences.

Koulibiak
I'm sorry to hear it's been such a rough journey for you, I do hope you make a full recovery eventually and it will all be a distant memory.

I'll be honest, if I have an experience like that it will 100% put my mental health into a downward spiral, it's already hanging by a thread due to a few other personal issues. Was there a reason why you had such a terrible time, did your surgeon explain the reason for blood loss and infection? Also was your surgery performed by a regular gynae or an endometriosis specialist? Mine is an endometriosis specialist at an BSGE specialist centre but I'm still absolutely petrified and very close to pulling out of the op.

Yes, it's planned as a robotic laparoscopic hysterectomy.

@Redsparkleydeeleyboppers
I know lots of people who’ve had a hysterectomy and it’s a very standard procedure that they do all the time.

you should also get a pre-operative assessment which is a chance to ask any questions

I’m sure you’ll be fine.

OP, can you ask for a second opinion? Might be worth also talking to the Endometriosis Association.

I had a total hysterectomy at 48, best thing I ever did. By the time the consultant discharged me after 6 weeks, I was completely back to normal. I didn't really have much pain and I had no complications.

I had a full abdominal hysterectomy in 2023, aged 52. I had no choice, I had a cancerous tumour in my uterus.

Surgery went smoothly, I lost a bit of blood, but apart from that, I made a decent recovery. I took things easy for a few weeks, no heavy lifting or physical exertion. Sadly the cancer returned ( but that’s a different story).

You can do this. Just take things easy post surgery (a good excuse to let others do stuff for you!)

Good luck 🤞

I had one ten years ago and I won't lie, it bloody hurt and the recovery was poo as I for some reason thought I could do a bit more than they advised 🤦🏻‍♀️

I had the big 8 inch cut along my knicker line though (no visible scar at all!) so it is a bit more healing than lapascropic.

My best advice is take some good peppermint and some peppermint tea to hospital with you. The wind pain was the worst and they couldn't seem to give me anything to help it! My DP brought me both of those things and within a couple hours it felt SO much better! That and the pain of constipation after were honestly the worst bits. The codeine pain relief caused my constipation 😕

Would I have it done again if I could change things? 100%. Bloody fabulous. Although took me over a year to stand up and not check my seat to be sure I'd not leaked as period bleeding very heavily was one of my issues. Habits!

Edited as one sentence made zero sense reading it back!!

I was similar to you - absolutely terrified. What worked for me was telling myself not to worry until the day of the op, then I just totally compartmentalised it.

I told them at my pre-op how nervous I was and they were really reassuring. When they took me down to theatre they were faffing about a bit and I said “Please, can you just knock me out right now because I’m about to leg it!” And they did!

I had some pretty horrid complications and I was in hospital for three weeks but I’m still so glad I did it! Now I have no pain, no massive clots, no bleeding all over the place, no mood swings. I wish I’d done it years ago!

Good Luck with your op later this year.
After years of problems, heavy bleeding etc I had a laparoscopic hysterectomy at the age of 38 back in 1988.
Absolutely the best thing ever, it changed my life so much and I literally felt like a different person - healthwise. Within a couple of days of the op I felt as if I could take on the world!
Another advantage of the Op was that I never suffered any symptoms of menopause even though I was advised I would still go through a form of menopause ( perhaps I was just lucky)

Not a hysterectomy but I had a complex endo surgery. Before it, I burst into tears and said I can’t do this
I woke up, my op was extensive and 8.5hrs in theatre. Discharged the next morning (I was up searching for coffee 12hrs after) and back at work after 3 weeks despite the long op time and 7 incisions. No pain relief

i would happily have it done again if needed and mine was at a BSGE centre

the worst bit was being driven home after, take a pillow for in between your seatbelt and tummy. Oh and I usually dry my hair hanging off the bed, tried that on day 4 and got stuck like an upside down tortoise

I did my recovery alone - would recommend hoovering, washing hair, changing bedding and getting all your laundry done beforehand!

I’m at increased risk of uterine cancer and would have a hysterectomy tomorrow not to have that worry. It is your right to pull out of surgery of course, but I hope when you have a chat with the surgeon you will feel less anxious.

I'm 57 and had a total hysterectomy 10 years ago. Best thing I ever did, yes it was painful, it took me three weeks to turn a corner of feeling better. I was fine after 8 weeks.

I can wear white trousers and I have white bedding to, think of the positives as the negatives like pain etc are time bound.

Thank you. I had my pre-op last week, the nurse was lovely but when I explained to her that I wasn’t just scared, I was terrified she just said ‘Oh, you’ll be fine’. That didn’t really put my mind at ease one bit lol.

I have a telephone appointment this morning with my gynae to go over my fears but I’m not holding up much hope he will help as he is very brusque and has no bedside manner but I will see how it goes. Fingers crossed.

I will look into that. I’m not sure if I can get a second opinion at my hospital, although it’s a BSGE specialist centre there are only three gynaecologists who specialise in this one is obviously my gynaecologist, the other is supposed to be just as rude as mine and the other has a fantastic reputation and I saw him two years ago for a private consultation (which I can no longer afford sadly) but he has very long waiting lists on the NHS.

I’m sorry you have been through so much, thank you for your reply. I hope things have improved for you.

My sister in law over did it post op too and ended up having to go back into surgery to repair a prolapse so I’ll be very mindful to rest, if I go ahead with it.