Thoughts on hysterectomy??: I've recently... - Endometriosis UK

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Thoughts on hysterectomy??

Catie80 profile image
7 Replies

I've recently been diagnosed with endometriosis on uterus, pouch of Douglas, bowel, bladder and right ovary and tube, as well as adenomyosis following ex lap and excision of the endo and adhesions. My consultant has suggested a hysterectomy. Now I'm not totally averse to it, I've had my babies and am not planning more. I'm worried that it'll make no difference or things will be worse. I don't want surgery induced menopause, I'm 37. My consultant has said I can pretty much keep or remove the bits I want! So I'm wondering if I have everything except my left ovary removed...Following the lap I'd say things were briefly improved and now are as they were before, with new pains! (Had op 8weeks ago) I have had a Mirena coils since the birth of my youngest 11 years ago and a new one put in at op. any advice, experiences etc. gratefully received!

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Catie80
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JeanOsborne profile image
JeanOsborne

Hi a hysterectomy will get rid of the pain being caused from the adenomyosis but not endo. If you do decide on hysterectomy then you need to make sure ALL ENDO is removed too. If any is left it will continue to develop. Also , make sure it is done by a specialist surgeon at a BSGE centre, not a general gynaecologist.

Good luck.

Carla076 profile image
Carla076

I had a hysterectomy and to begin with it did help but like most things it was too good to last. Since the hysterectomy I have had another major surgery to remove scar tissue and endometrial deposits and I am now back in worse pain then ever and getting beside myself with what to do next. I am seeing my doctor tomorrow to plan the next stages. If anybody does have any suggestions they would be so very gratefully received. Xx

Marcia71 profile image
Marcia71 in reply to Carla076

I had hyster and ovaries out in Feb 2015 due to adenomyosis and endo. Of course pin from adenomyosis gone and no periods - hooray! However pain got worse so I had diathermy to burn off endo in nov 2015 and pain continued to increase so I got referred to BSGE clinic at Guys and after a years wait where I tried all sorts of medication and injections and exercises I persuaded them to do a lap which I had last Tuesday and they discovered I still had endo so they excised it, my bowel was stuck to pelvic wall so unstuck, my appendix was also stuck so they removed it. Also adhesions and scar tissue found and all were removed or separated or unstuck. And finally a special gel to help prevent further adhesions and scarring was put in.

Yes I'm still in a bit of pain but it feels very different to pre surgery so am hopeful this has sorted things for me and just goes to show you really need the specialist care a bsge centre gives you. I had two gynaes, a colorectal surgeon and two anaesthetists do my surgery!!

Carla076 profile image
Carla076

Wow that sounds like a lot of poor you. However if it helps it will be amazing. My bladder is very stuck up and have been told that if they had removed that endometriosis in the last surgery my bladder would have been irreparable. I am going to try a radical overhaul in diet as I know I am overweight and have been recommended yoga so will try that. Willing to try anything to be honest. Xx

lwp75 profile image
lwp75

I have endo, adeno and fibroids and have also been told a hysterectomy is the next step, (leaving one ovary) alongside cutting out all the endo. Just hope they get all the endo as I know that can come back! It feels like a huge step but better in someways to then only be dealing with one issue rather than three!

The gel you mentioned Matcia sounds interesting, do you know what that is called?

Marcia71 profile image
Marcia71 in reply to lwp75

It was called something like adept. It's not written on discharge notes so not sure exactly but gynae should know about it. Admittedly mine was BSGE specialist but she said that it should always be used with endo sufferers

Catie80 profile image
Catie80

I too had the gel applied when I had the surgery, I'm sure he said it was hyaluronic acid...which I'm sure I've heard mentioned on an advert for anti wrinkle cream or something! Thanks for your responses, it seems my reservations are justified ..... With regards to the hysterectomy it seems to me there's little point while I still have ovaries! But not quite ready to hit menopause....providing my mirena keeps thinks relatively ok I think I'll wait and see how things progress. Compared to the pain some of you on here appear to be in I think I'm getting off quite lightly!

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