Has anyone had a hysterectomy - what has been your experience?

[Afternoonsnooze]

I’m 51, have suffered with awful periods since they started at the age of 12.

I have tried various things to try to help including 5 hysteroscopies, polyp removals during each hysteroscopy and a uterine ablation. The ablation has failed and I’ve developed very very painful Post Ablation Failure. I’ve recently found out (via a thorough mri) that I actually have endometriosis and adenomyosis. Seems the adenomyosis was there in a mild form before the ablation and the ablation has exacerbated it. Gynae should have checked before the procedure but didn’t and now I basically have a fucked up uterus with diffuse adeno and deep endo.

However, the NHS doesn’t seem keen to do a hysterectomy. I recently saw a different gynaecologist who performed the ablation (an endo specialist this time) and he went out of his way to try and put me off having the op saying there are too many possible complications with such a big op. Weirdly, I’d seen a private gynae a month before who was more than happy to perform a hysterectomy and never mentioned any major complications but it would cost me £10k which I just don’t have so would have to push the NHS for it if I really wanted to go down that route.

I know some people don’t have a choice and have to have a hysterectomy because of disease etc but if you opted for one how did it go and was it a good choice in your opinion or a mistake?

Following for interest

I had one in 2017 at the age of 38. My periods were miserable, much like yours sound, from starting at 10 and I’d developed fibroids which meant I bled constantly for 2 years, the last 6 months of which included regular flooding. I was offered hormonal alternatives but just can’t tolerate them and pushed for a hysterectomy.

The NHS refused to give me one due to it being major surgery and - most outrageously - my husband possibly wanting to use my uterus to carry his children! Eventually I found a consultant who agreed in principle to do it but then put lots of obstacles in my way which made it beyond frustrating. I ended up paying privately and had no barriers placed in my way by my surgeon.

The surgery itself was keyhole so I was only in hospital for one night before coming home to recover, which was a bonus. It did slightly mask how serious the op is as I just had 2 tiny cuts on my abdomen and I didn’t take it as easily as I should have after the initial recovery period. You need a lot of time to heal from all the internal stuff!

7 years on I’m as delighted that I had it done as ever. No periods, though as I kept my ovaries I still get raging PMS from time to time, and no flooding at inconvenient/embarrassing times. I do have to be diligent with pelvic floor exercises - I use a kegel8 - otherwise things start to droop a bit but it’s such an embedded part of my routine that it’s no big deal.

I am still aggrieved that I had to pay for it - and it wasn’t cheap at all - because the NHS gynae people saw me as a baby gestation device (my DH had had a vasectomy many years before this, no questions asked). I’m sure I could have had some relief from the flooding if I’d gone for one of their treatment options but it gave me huge peace to not have the fear of it coming back, and also I know that some of their treatment options would have exacerbated other health conditions of mine and when I pointed this out it was met with a shrug.

Honestly in your position I would find a way to get it done, either by finding a way to lobby the NHS or finding the cash somehow (I appreciate neither option is easy or appealing). Having had 28 years of heavy, painful periods, ruined clothing/bedding etc I didn’t realise how freeing it would be to rid myself of them.

I had one age 46 as I had two huge ovarian cysts. I had lots of adhesions connected to my bowel so it was considered the best option. The op itself was OK, incision on c-section scar and recovery was OK too, I was in hospital for 3 days. I had very weird hormonal stuff going on for a couple of weeks. Hot flushes, moods - it was wild! I did take HRT for a year but stopped after that due to risk of blood clots (family history.) I have to say that I do regret having to have it (not that I had a choice) my pubic area has some numbness now and sex has quite frankly, never been the same since, which is sad.

Hi @Afternoonsnooze
Do it! Rob a bank if you have to 😀

I endured 3 years of horrific post menopausal bleeding due to polyps and fibroids. Constantly anaemic, exhausted and living my entire life around where/how I could change sanpro (which cost me a fortune). Ruined clothes, bedding etc. No social life.

NHS mucked about with various meds to no effect and agreed I needed hysterectomy but waiting list was “piece of string” length.

Went private in 2021. Total abdominal hysterectomy which cost £8k. Started HRT a couple of months before.
💯 got my life back. Two nights in hospital. Bit of pain around wound site for a few days then fully fit and recovered within a couple of months. No more periods/continual bleeding. No more smear tests.

I’d ask for another private consult specifically to discuss risks (which all surgery has) but it does sound as if this would be the best outcome for you.

Thanks everyone. I am getting to the point that I just want my uterus out now, I’ve truly had enough of my issues. Really wish that I had the funds to go privately but I don’t do I suppose I’ll just have to push and push the NHS for it.

" I’d developed fibroids which meant I bled constantly for 2 years"

Oh dear. I have fibroids. I live on the continent and was immediately offered a hysterectomy, which I don't want. I thought my fibroids would just mean heavy periods and my cycle has been regular until now, but last night I started bleeding when I was actually supposed to be ovulating.
From my last hormone check, I don't think I should be at that stage of perimenopause yet, so do the fibroids just mean I'll bleed all the time?

Ah you are me 3 years ago! Multiple fibroids made me bleed heavily 2weeks out of every 4. I tried everything you did too, including hormone suppressing injections for a year - a surgical menopause. My consultant was keen for a hysterectomy snd I agreed. It took nearly 2 years wait on the nhs but I got it done last November and I no longer have my life ruled by pain, flooding and san pro. It's amazing.
The op itself was keyhole. At the start it was sore but painkillers worked fine. I was tired for ages but nothing awful.
As a recent bonus - I got my haircut recently and my hairdresser was shocked as to how much my hair had grown. I think with all the bleeding I was just existing before. Have to say, it's most days that I reflect how thankful my crappy uterus has exited my body. Hope you get a resolution soon, the bleeding is awful.

I don't think so, I think it rather depends on the fibroid, my mother had them and "just" had heavy periods. I had some other stuff going on that meant my hormones were a bit screwy so that may have had something to do with it.

The first 18 months of my constant bleeding was pretty light, but did happen every day, the last six months though was consistent heavy bleeding with huge clots and flooding and was a total nightmare - I would have performed my own abdominal hysterectomy if the private surgeon said no.

I had an abdominal hysterectomy due to fibroids around 12 years ago in my early 40s. Best thing ever.

Some private hospitals have loan schemes. Might be worth considering. I had a hysterectomy at 42 - on NHS but had a private consultation first. I did not have any defined pathology but had endured decades of 2 week long periods with flooding and lots of pain - the guy took pity on me thank goodness.

It was the best decision I ever made and made it possible to have something resembling a normal life. I could not have gone on as I was.

Thanks. Maybe it's menopause then that I've just got my period two weeks since the last one? Or just a blip? I've never been this irregular before. I'm definitely hoping it not going to be regular/non-stop bleeding now because I can't face an operation either.

Vaginal hysterectomy in my 50s.
Biggest issue is huge effect on orgasms.
I hadn't realised that uterine contractions played a big part for me.
It sounds to me though that you desperately need this , I'm dumbfounded why NHS can't help.

Yes, I had a full hysterectomy, via laparascopy.. I was suffering like you. The NHS wouldnt give me one so I went to my country of origin,paying about £4 k and had it privately. Best thing I ever did. I have recovered one week of the month, when I was lying about groaning in pain. No side effects except some hot flushes which are manageable. I can;t tell you how relieved I am to be able to wear light coloured clothes and not carry about a ton of pads.

The NHS seems to hate hysterectomies but they are common in many countries.

I had one on the NHS aged 34 due to extreme flooding periods causing severe anemia and other issues. All GPs etc were reluctant to refer me and kept citing my age and saying gynae “ wouldn’t touch Me” - they consultant took one look ( thankfully I was bleeding at a first visit) and said “ what do you want?” I said for it to all stop and he said if I was his wife he would be advising total hysterectomy and it was booked there and then.

surgery went well although took longer than expected due to some issues and I was home the day after. Did the school run the day after that and took my eldest abroad 2 weeks after for a short break in Europe. I’ve never looked back it’s literally changed my life :)