Endometriosis UK
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Hi there ladies, I've been asked by my gynea would I consider an hystorectomy. But I'm not fully convinced as I've heard some people have been fine and not looked back, and others who have had one and has suffered later on. So I'm wondering who has had full and partial and how you have been afterwards, also how long was you recovering after it. I look forward to reading about you're journeys x

9 Replies

It's not a solution for everyone. I looked into it but having got a second (private) opinion, I was given alternatives, which I'm grateful for now.

A hysterectomy is a major operation and can be a sledgehammer to crack an albeit painful nut.

My suggestion would be to get a second opinion.

Good luck

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I had a total abdominal hysterectomy and both ovaries out two years ago for adenomyosis and endo. Obviously helped the adenomyosis - pain and heavy periods. But as done by a general gynae endo was left behind in the mistaken belief that it would die off. I'm now in worse pain and awaiting excision by bsge surgeon. So hyster is not a cure for endo and Ive been left worse. If you think you do want it make sure you are referred to bsge clinic and that endo is removed at the same time and then hopefully you'll be ok.

Take a look at hysterectomy associations website for lots of useful info and advice on deciding.

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And I had 3 months off work at the time and went back on phased return as in so much pain and tiredness.

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I am due to have a hysterectomy + BSO + excision of bladder and bowel endo in 9 days. I was only diagnosed with endo last year and by that point my disease was very advanced and I've not been left with many options. I already have children and don't want more so fertility is not an issue.

It is vital to get a second opinion. I was initially told I would need a hyst by the general gynae who diagnosed me last year, and had that confirmed by a bsge consultant (who will be carrying out the surgery). The bsge centre have carried out a detailed ultrasound and an exploratory lap as part of the process of planning for the hyst which has turned out to be a good thing as they found endo on my bladder that the general gynae had missed and would have left behind if he had done the surgery. It's important to realise that a hyst with endo is not a routine hyst, it's a much more complex surgery.

They've discussed the reasons for recommending the hyst to me in detail - the hysterectomy is to treat my adenomyosis. I need my fallopian tubes to be removed as I have hydrosalpinx and the tubes are damaged. They are recommending removal of ovaries as I have endometriomas and they also want to minimise the risk of further surgeries (as it's shown that without ovaries, the endo is less likely to come back). I then have severe rectovaginal endo sticking my bowel and uterus together, so my cervix has to go because it has endo in it, I need bowel surgery to remove the rv endo, and I will then also be having bladder surgery/cystoscopy/stents to deal with the endo growing on the bladder and next to the left ureter.

It has been a difficult decision. I am anxious about the surgery and the fallout afterwards, as I am only 39 and will need HRT until I am 50, but all drug treatments have failed and the consultant has said that excision alone is risky in the longer term and could only be justified if I wanted to get pregnant.

Hope this helps. x.


Yes thanks it's helping reading all these stories I'm also 39 had my children but I've been sterelized also so didn't want anymore children either x


I've just had a hysterectomy after many ops and treatments, including ivf, have been unsuccessful. I could no longer cope with the pain and constant (literally all the time) bleeding. I discussed with my surgeon (at bgse centre) and he ensured I was aware that it was not guaranteed I'd be pain free. But I decided that as my main pain was from cysts and the bleeding was killing me, those symptoms would be removed.

However. Whilst my op was a success, very long due to severity of endo and adhesions, I have come away with many more issues. Hopefully they will be sorted but at the moment I'm still living with them.

People need to be aware of the risks-I signed the consent form, knowing there were risks, but as with many of us I thought none would happen to me. They did and five days later I was rushed into my local hospital very seriously ill. I now know I was about 2 hours from not being here. Unknown to anyone, during my hysterectomy which was undertaken laparoscopically, they'd perforated my bowel which had now caused sepsis. I required emergency surgery, resulting in a stoma. Hopefully this will be reversed but that's no guarantee. I also had major continence issues and it's thought the right ureter was damaged when endo was removed from it.

I've gone from one consultant in one hospital, to three in three hospitals! I have thought "why did I have the op?" But I had to. I had no life. I've had tears, lots of them, but have decided there's no point in feeling sorry for myself as things could have been so much worse.

Think hard about it. Only you can make that final Decision.

Good luck with whatever you decide. X


You have had such a rough time :( but I agree, you get to the point where you don't know what else to do. They have said that if I don't have the hyst, my option is to just leave it and hope that the hydrosalpinx doesn't get infected, the bowel disease does't get worse, I don't end up with kidney damage. I'm stuck between a rock and a hard place.

I really hope you are able to get things sorted. x.

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It's sucks that all us women have to go through this, and have to make decisions and don't always know which is right for us or not, esp surgeries where they can and have gone wrong I sympathise with all of you life is tough as it is without this disease taking away things that others take for granted like a day without pain, spontaneous days out which I have to tell my friends I can only go if I'm having a good day makes me feel bad. But I know all you ladies go through the same xx


My sister and mother both had hysterectomy as and both suffered with similar problems to yours seems to me as it happens to a lot of people who have it done, my mum and sis can urinate without even knowing their doing it. So have to wear tenna or continence pads to help, plus they're on constant mess as they can't open they're bowels. My sis has ended up with fibro and a list of other probs since. She has constant water inf she lives her life in bed 24-7 she doesn't get out much apart from when she's in hospital for a few days quite regularly. So that's kind of why I question it spec as I've been taken off prostrap and put on a pill which are shit and pain seems worse, can't get an appt very rare once a year if I'm lucky. Sorry to babble on x


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