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?

100% agree with @SeaToSki. I had mine almost 20 years ago and it's been amazing. I resisted because of bodily integrity blah blah blah until my doctor pointed out that the dramatic bleeding sometimes killed. And my uterus, after pregnancies, surgeries and fibroids was adhered to my bladder. Now I can sleep through the night without having to go wee until the morning. For me it was also life-changing

Thank you so much everyone. Your replies have quelled my anxiety somewhat.

I'm.glad to hear you've all had positive experiences.

Well tbh, I was hoping to get to full menopause (I'm still in peri atm) and most of my issues would die down but from what I read adenomyosis is really only 'cured' by hysterectomy and I'm certain if I don't get a hysterectomy I'll will forever worry what would happen if I were to develop uterine malignancies if the ablation holds back any symptoms, how will I now without post menopause bleeding?

I have never had a great relationship with my uterus, she was kind only twice in my life when she grew my two DC but apart from that she's been a bitch to me since I was 12 so I won't be sad to she her go but just wish it wasn't such a big op to get her evicted!

Thank you so much. Your reply has helped ease my anxiety.

I will definitely ask to chat with the anaesthetist at the post op appointment.

I do wonder if it was my anxiety post last op. It was only a D&C so not a big op. I felt tired, panicky and spaced out for 4 weeks afterwards.

The hysterectomy is planned as key hole robotic.

I will check out the link. Thank you again.

Fab! Should be a very straight forward recovery then. You often get achey shoulders post op as they fill your abdo with co2 to make space, that drifts up, presses on the diaphragm and causes shoulder pain (same nerves supply both), but the incisions are tiny and should cause minimal pain

We are super used to people being petrified (i always point out it would be more unusual to not be nervous) ...and we are v good at reassurance :) x

@RaraRachael did you have to fight to get one? I am in a similar position even down to being a teacher. I am on constant iron tablets and have to be close to a toilet for the first 3 days of each period. I’ve been referred to gynaecology but my GP said they will only offer a coil and not do anything else.

@WhatHaveIDone21 Initially I was put on tablets to reduce the bleeding which worked but as soon as I came off them I was back to square one. My GP sent me to see a consultant who I thought would come up with some other suggestion but he just said "I think we'll do a hysterectomy " I had to wait about 4 months but didn't mind as the end was in sight.

I had a full abdominal hysterectomy around 12 years ago

BEST THING EVER

@RaraRachael thank you. I’ve also tried tranexamic acid but it didn’t make any difference. I’ve tried different contraceptive pills too but no joy.

I’m due to go on holiday next week and period is due this weekend. I’m just praying it arrives on time because if it’s late and starts on holiday then I’ll have to stay inside for the first few days. I don’t think people realise how debilitating it is.