Hysterectomy, I need one but am too terrified to go through with it. Can someone talk some sense into me PLEASE!

[JustJane73]

Following on from decades of gynae issues and very heavy bleeding which caused severe anaemia and iron deficiency for 10 years, I opted for a uterine ablation in 2022 (ironically to avoid a hysterectomy). This stopped the heavy bleeding but I ended up in such pain. I asked for a MRI in 2023 which revealed endometriosis and adenomyosis, I was 50 at the time and so annoyed as I had been under the same gynaecologist for 10 years and he never suggested endo. Since then I have found out from my new gynae (who is an endo and adeno specialist) that I should never had the ablation as this caused the adenomyosis.

Due to the damage from the uterine ablation and the adenomyosis my gynae has recommended a full hysterectomy. He will also cut away any endometriosis that he finds.

I know that I don't necessarily need this op, it's not an urgency but I will never get rid of the adenomyosis if I don't and I now live in a bit of fear that if I were to (God forbid) develop uterine cancer at a later date I wouldn't experiece the first signs of the disease such as post menopause bleeding as I don't and can't bleed due to my uterine lining having been burnt away (why I ever opted for an ablation I do not know).

Thing is that I am absolutely terrified to go through with this op. I have awful anxiety, especially health anxiety for which I have sought out so much help over the years but as I age it is just getting worse (not helped that I care for my mum with breast cancer and dementia so under constant stress).

I am scared of a GA having only had one before around 20 years ago and I felt like crap for a full month after. People say 'Oh it's lovely' it's like a lovely deep sleep. That isn't helpful to me as it terrifies me even more, I hate the thought of being put to sleep unnaturally and being under the care of someone that I don't know. I am also scared of the pain after and the potential risk of infection and sepsis or of my gynae making a mistake and perforating my bowel or something awful.

As this is all being done under the NHS I feel that I can't simply ask to speak with the anaesthetist to ask questions and I have asked my gynae so many questions (he's not the nicest of consultants and kind of rushes you through appointments) but he has not put my mind at ease as he is quite brusque.

I may have up to a years wait although it could be quicker as I am on a cancellation list. How do I overcome my genuinely panicky fears before the day comes?

The thing that helped me was picturing life on the other side of the procedure. What will be easier? Where will you go, what will you do now that isn't possible or is hard work at the minute? Focus on those and try to see the operation as the hump that you need to get over to get there. Also, worth telling the anaesthetist on the day that you felt rough for a long time after your last GA. Its possible they can use a different drug combo which might leave you feeling better. In general I think GAs might have improved since 20 years ago, I certainly feel like I recover better from them that I used to (and I've had 10).

I had one for endo a few years ago now and its quite frankly been life changing in the best possible way.

I am a big advocate. I also had them take out my ovaries and am on HRT, which is fab.

I had 5 years of gaslighting male gynaecologist. My periods were hell. They refused investigations for Endo (which was found when I had my hysterectomy) and told me just fibroids. Shows what they know!
The pain was so bad and the bleeding so heavy I missed days of work each month and I was on permanent iron tablets for 13+ years.
I point blank refused ablation because I read the lining often grows back, and I didn’t want to have a temporary solution.

I skipped down to theatre on the day I was having my hysterectomy. I had a lovely female gynae on the day. It was one of the happiest days of my life and it has been LIFE CHANGING!
I saw it as a positive step-and it was-the very fact I have pretty much no more pain, don’t have to worry about flooding through superplus tampons and thick pads every 40-60 minutes when I’m out (a cinema trip was impossible!), sleep on bed mats and towels and get up 4/5 times a night to change sanitary protection has been so worth it.
The post op pain lasts a surprising short amount of time and is manageable for the first few days with painkillers. The anaesthetic was fine (I’ve had several in the last 15 years) and certainly have never felt off for a month with any of them, the gynae will have to outline the risks as in worst case scenario, but the chances of things going wrong are low, as is sepsis. I have 3 friends who have all had hysterectomies for a mix of fibroids, Endo and/or adenomyosis and none of us had any kind of post op infection, let alone sepsis.
All I can suggest is to try to picture the pain free future. I know it might be unimaginable at the moment, I hardly dared to hope life would be so good post op, but the the benefits of having the op far outweighed any concerns for me op.

Me too and it was the best thing ever, it transformed my life.
Six weeks later I was fitter than I had been for years.

I had one, and it was the best thing I ever did. However I didn't have it in this country. I had a year long waiting list too and I couldn't wait that long.
You do need recovery time afterwards and some help.

I had early stage endometrial cancer at 49. Found by accident, but that's another story. My womb, ovaries and cervix were removed, all vaginally. It"s a big operation, but it had to be done.The immediate aftermath was OK. I was doped up to the eyeballs and simply relieved everything was out. I was quite weepy though, I think it was the GA. I'd say that took a week to work its way through my system. Re the physical recovery, I followed every instruction to the letter. I had been very active and physically fit before the operation. I went for little walks every morning - at first around the house, then into the garden, to the end of the drive, along the street etc. A little further every day. I'd potter about at home in the morning and then rest and nap. I watched countless films, read books etc. Potter about in the late evening and then bed. There was no infection or any complications with the wound healing BUT, and I cannot emphasise this enough, I DID NOT PUSH IT. You MUST rest. You will be very tired, but slowly and surely you will recover. I'd say that was my life for about a month/6 weeks. Pain wise, I simply took paracetamol and I think that was only for about a week.

So, in answer to your question, "how do i stop panicking". That's a natural reaction I think. It's a big operation. However as the other posters say, just imagine your life "on the other side" with no gynae issues. I think also talking to people. "A problem shared is a problem halved" as the saying goes.

You can ask the anaesthetist to slam in the propofol.

I react very badly to them, there's no drifting off to sleep for me sadly. I shout and cry and fling my arms around.

Next time I'll be asking to go under ASAP. Possibly even mask me at the same time as the propfol goes in.

Good luck op.

Mine were all gynae ops and I'm definitely better after than before.

I had one at 43 for extremely heavy bleeding. Best thing I ever did. I can't describe the sense of freedom now that my periods weren't taking over my life.
Prior to it I had to plan my life around access to toilets, clothing limitations due to leakage and all made worse by being a teacher and having strict toilet times.

I had fibroids for years. I begged and begged for a hysterectomy and was refused because I don’t have children. I made it very clear that I didn’t want children but it made no difference. In 2023 I was diagnosed with uterine sarcoma. My cancer was very aggressive and advanced. Finally I had a hysterectomy in October, 2023 but my cancer has a very strong chance of returning.

You’re so lucky to have a gynaecologist willing to do a hysterectomy. I wish I was that lucky.

Had mine 2 years ago. It’s life changing. My life is no longer ruled by flooding, pain and san pro.

I had mine at 38, abdominal surgery, they took out ovaries and cervix as well. It changed my life, no more carrying towels everywhere to mop up leaks etc.

I have been on HRT ever since, without any troubles. For me the issue was early menopause but as you are a little older then that’s not an issue.

I was extremely sore for 2 weeks but then rapidly got better. 6 weeks later I hosted our usual family Christmas for 20 people.

Grab this with both hands and you will be so pleased you did it and ended all your suffering.

Absolute game changer for me too. I was terrified as I had never had an op in my life (I was 49) but I was really suffering due to a giant fibroid that caused heavy periods and flooding and anaemia. The absolute freedom of not having to worry about leaking through, or period pains is a gift.

I had an abdominal hysterectomy over 30 years ago aged 34 because of a very large fibroid.

Best thing ever. No more painful periods. No more heavy bleeding and having to use tampons and sanitary pads, getting up 2 or 3 times a night to change them.

I was lucky as I had no pain at all and never needed any pain relief. I showered the morning after my op and went home later that day.

I went for a walk every day starting with just short walks which is what my consultant recommended.

I had mine at 58 and again, was one of the best things I've had done. They also found endometriosis so the operation was long, but they still managed to do keyhole surgery which made a huge difference. The catheter and drain were annoying and sore after, but once removed after a day, I had no pain at all, just a feeling that my insides were a bit discombobulated perhaps, which was actually the case.
It's great to have no more painful periods and heavy bleeding.
As others say, it's important to take it easy after especially no bending down or lifting much for a few weeks, but I was walking and driving etc from day 2.

I had an unexpected mental reaction to being offered a hysterectomy - logically I needed to do it but emotionally it drove me a bit mad. You know the good reasons you should do this - could you see a therapist or counsellor in the coming weeks to unpick why you’re feeling so reluctant? There’s a FB group hysterectomy sisters where you’d get support too - I think it’s quite common to have very mixed feelings about this.
I had mine by the way and all ok.

Post menopause I had an elective hysterectomy at 57 for fibroids and felt as terrified you do. I asked for the removal of ovaries, tubes, uterus and cervix as I thought they might potentially present with cancer.
After the operation I administered my own painkiller and was surprised that I felt well compared to a section I’d had 28 years before. When being washed I should have asked for toothbrush and paste. The next night I got out of bed and slowly but steadily walked down the corridor. 36 hours later I was at home. The relief that it was over and I’d been discharged was exhilarating.
For a couple of days only I needed help to move from horizontal to vertical and vice versa (in and out of bed). Get plenty of rest and sleep, eat well, walk a little further each day and don’t pick up anything heavy for quite a while. Once on the other side you’ll be glad you had it to wave these problems goodbye.

I’d have it as soon as possible , the younger you are the easier the recovery will be.

Anaesthetist (ps you can just talk to us, we aren't mythical creatures just ask the nurse you talk to in preop and they'll arrange it)

Anaesthetics are so so safe (safer than an easyjet flight to Spain for the average healthy human)

The drugs are much cleaner now than they were that long ago (but even so I can't logically see how a GA can affect you that long later)

Are you having it keyhole or open? That determines the Anaesthetic combo..if open (less common but more likely if bulky uterus) then would recommend a spinal too

These rcoa leaflets are great and have self.hypnosis podcasts narrated by dual trained anaesthetists and medical hypnotherapists

https://www.rcoa.ac.uk/patients/patient-information-resources/preparing-your-mind-surgery

Arguably there's probably no safer time of your life than under GA as you have 2-3 people who's only purpose is to monitor all of your vital signs

What does life look like if you don't have it? Is there an option to do nothing?

Which we will say no to cos that's dangerous....

I had a total abdominal hysterectomy plus ovaries removed, aged 48. I had no quality of life at all for at least a decade before that. It was life-changing, and I only wish I’d had it done before. I hate the fact that the NHS makes it so difficult for women to have a hysterectomy.

When the anaesthetist comes around to talk to you on the ward, ask them to prescribe a sedative to take the edge off the anxiety before you go down to theatre. By the time I got down there, I was completely relaxed. Anaesthesia has improved hugely since you last had it, I had no nausea (I can remember being sick post-op as a kid). I was back in my room texting people an hour after the op.

The only bad day I had was the day after the op when they make you get out of bed and walk. It was scary getting out of the bed, I felt faint and nauseous. I hated the physiotherapist! After that it was pretty plain sailing, but do keep on top of the pain relief (and the laxatives!). I took codeine and ibuprofen for five days then dropped down to just ibuprofen.

I’ve just had a huge endo op, a full day in theatre and I felt ok after. Mostly tired as I was on hourly obs so very little sleep!
they offered me a spinal as well as the GA but I didn’t have that, just some paracetamol afterwards
i have kept everything (except my appendix!) but they did a lot of excision, I had a bowel surgeon in theatre too

I was not knowingly anxious about mine and I am a really calm stoic person but I still wept for the whole of the day before. What I am saying is it's normal to fear the unknown and letting go of control. It is a big deal. The porter and the anaesthetist were my guardian angels going down to theatre, they comforted me when I cried, they made me laugh and the whole team took care of me. My advice

1. Get the facts you need but no more. What questions are going to affect your decision. Don't forget to fully understand what menopause after hysterectomy will mean for you.
2. Make your decision and give yourself a cooling off period. Then commit to a course of action.
3. Don't seek reassurance because it won't help, it'll be gone before it's any use and then you'll be asking someone else to meet your reassurance need. Instead, look within. Yes, it will be hard. Yes there are uncertainties. You are more capable of dealing with those than you know.

I had one a few years ago, via pinhole surgery. You recover alot quicker than the hysterectomy of the past.

Absolutely life changing for the better. They do this op day in day out. I was home the next day. Pain was minimal and it was lovely just doing nothing. Just get on with it because you need one! Your gynaecologist mat not be the one who operates. I had two fabulous women. A lovely aenethetist . In 2017 I had to have four operations in succession - one a month with GA each time. They were fine and if you say you are pukey then they give anti sickness meds. My blood pressure is really low so I wake up in a lovely heated blankie thing. There really isn’t anything to be worried about.