Endometriosis UK

Need advice regarding wether to have total hysterectomy or not?

I have just had my third laposcropy to just confirm that I have stage four endo. My bowel is attached to the back wall of my uterus. Consultant has confirmed that there are a lot of lesions. He has got a bowel surgeon on board to assist in surgery who I am due to see 14th Aug. I am on a constant 3 month cycle of the pill to control growth. Recently was bleeding heavily whilst still on pill so advised to take a break and continue for 2 months at a time in stead. I am 45 I have completed my family therefore it has been suggested that I have a total hysterectomy. The Endo surgeon will then do a total excision of the pelvis. Then the bowel surgeon in the mean time also has to remove endo from my bowed without damaging it.

My dilemma is this is going to be big surgery and quite frankly I am scared. I have asked my consultant what I should do, do I leave it and if I do how much further damage will it cause to my bowel? Also I can feel it in the nerves on the top if my left leg. Consultant is very vague and says that if I want to leave it I can but there is no guarantee it will stop growing.

Please help has anyone else had similar surgery and if so how was your recovery? Any advice would be welcome as I don't know what to do. Because I am on the pill I am not in constant pain from this condition. I am aware of it in my bowel but nothing I can't live with. But I still suffer from extreme tiredness and tedernesss on the top of my left leg. And the random bleed I had whilst on the pill had to be treated with blood clotting drugs because it was like a tap. Any advice would be welcome.

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I had this surgery back in March. It is a very, very hard surgery, both physically and emotionally. It really depends how bad your symptoms are and what other treatments have been tried.

I'd had a mirena, norethisterone, decapeptyl and cerazette and nothing had been able to stop the bleeding or the pain. I had very extensive disease - adenomyosis, endometriomas, hydrosalpinx in the right fallopian tube, kissing ovaries, and 4 large lesions several centimetres across including a rectovaginal nodule the size of a golfball. My bowel and uterus were stuck together and then all that was stuck to the pelvic wall on the right. It was growing round my left ureter and up towards the kidney. I had it on my bladder.

I was taking multiple painkillers, had daily pain, unbearable pain during my periods that meant I was having to go to A&E for pain relief and didn't get decent enough quality of life with the hormone treatments. I am glad I had the surgery but it was a traumatic and difficult recovery and I am now dealing with the fallout of having my ovaries removed and it is hard. If you are absolutely at the end of the road and can't cope, it can give you a better quality of life, it certainly has for me, but it's not a magic wand.

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I feel for you as I have been in a similar dilemma. I'm a bit older at 50 and have thus far ducked major surgery. My understanding is that they have to induce an early menopause to do it, so you have that to cope with too, with attendant risks (bone density etc). So I have opted to tough it out until I menopause naturally, then reassess the pain and consider whether surgery is needed.

For years my symptoms were well controlled by the Mirena, although of course there has been some progression of the underlying disease. I'm now peri menopausal and suffering much more pain. From what I've read endo flares up in the menopause. So looks like I've got a tough year or two ahead.

I don't know if that helps you? These decisions are very personal. I think I've gone for fairly minimal intervention and perhaps there is an argument that my endo has been under treated. But we each have to find our way with it. I've no regrets so far (knowing I may yet have them).

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Hi

I'm following this. When you say total hysterectectomy, do mean the ovaries as well? I fear I'm on the road to a hysterectomy due to adenomyosis, although being 36, I'd want to keep my ovaries if at all possible.

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I am 39 and as I've said, I've had my ovaries removed. It wouldn't have been my first choice - we know it causes health problems in the long term. But with very severe disease the stats show that 50% of women who keep their ovaries have a return of endo and need more surgery. It's reduced to 10% in women who have their ovaries removed. In the end it came down to a simple decision about risk - my consultant advised me that surgical menopause was a better option than more surgery on the bowel and a permanent colostomy or more bladder surgery and incontinence if the disease returned. It upsets me that I had to agree to it, I didn't want it, but it was the lesser of two evils.

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I want to keep my overies. My consultant has advised to take them out so to reduce risk of reoccurring endo. Has anyone kept their overies and had uterus removed? Is it possible yo just keep one maybe.

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Hi Jo. My comments about a hysterectomy keeping my ovaries were based around my symptoms and my suspicion that most of them are due to adenomyosis. Having said that I could be surprised at my lap next month and they could find a tonne of endo and I might feel much better with it removed. I was just wanting to follow to get a better understanding of what recovery might be like. I don't think anyone would chose major surgery with the loss of entire organs easily - it's awful we have to make decisions like this. I desperately hope that, in the future, women will have more options.

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