Can I request a hysterectomy?: I have deep... - Endometriosis UK

Endometriosis UK

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Can I request a hysterectomy?

Emma-Hold profile image

I have deep infiltrating endo on my bowel as well as a 5cm endometrioma on my left ovary and a polyp on my womb. I went to see an endo specialist this week who was very helpful and understanding and is going to put me forward for a laparoscopy. She is however waiting to have meeting this coming week with other drs to discuss my diagnosis/MRI results and to decide what type of op I require. She did mention that it may be recommended to remove whole ovary!! I have no use of either ovary nor of my uterus so I would love them to remove the whole lot on one go in the hope that this would at least reduce the pain without the need for further ops in the future. My question is can I request that this is done and, if so, do you recommend I somehow contact her prior to their meeting so that she can put this to the team? Thanks

13 Replies

Hi, I am so sorry to hear those are the options you are facing, I don’t know too much about it; however, I do know a few factors that weigh in on the decision. How old you are, if you are older do you have children, are you willing to take hormone supplements. Taking everything out is more than just a removal, without your ovaries there are a lot of hormones your body won’t really be producing, Estrogen being one of the major ones. Hormone supplementation would be required after the fact which can bring in a slew of other issues. Also from how my surgeon explained it to me the endo. on your bowel, if not removed in its entirety, could grow back even without your ovaries since supplements would still add estrogen which is the antagonist. I’m in no way saying don’t do it, but I definitely think you should reach out to your doctor as there is a lot to discuss about that particular procedure. I also do NOT know everything, but I really hope this helps!

Thank you for your reply. I am 46, have 2 kids (well they are adults now) and don’t intend to have any more. I would also be willing to take the hormone supplements. I appreciate what you say, I think it is something I will have to discuss with my doctor! Thanks again ☺️

All of that should lead to a better possible outcome of getting the full hysterectomy! It is also possible the hormone supplements would be different and they could simulate a early menopause. That is just a guess though! I just know they are not fond of doing those procedures on younger, childless women, since it is so irreversible. (I did not intend for any of that to sound rude, I apologize if it came off that way at all!) I hope you reach the best solution for you!

It didn’t sound rude at all! Thank you very much for your advice ☺️ x

I think you should have a full hysterectomy, I had endometriosis size of a melon covering all over they gave injections to stop me bleeding while waiting for my opp, I did have to be cut open as they had to stitch my bowel and bladder up as it was stuck to that as well.

Emma-Hold profile image
Emma-Hold in reply to Bluesea7

Thank you! My doctor has told me that she will be giving me injections to stop the bleeding too. I think I too will have to be cut open and have my bowel stitched!

Bambi103 profile image
Bambi103 in reply to Bluesea7

I hope you dont mind me asking, did the surgeon(s) get all your endometriosis and with ref your bowels and bladder did you have to have a temporary bag?? So sorry if this is too personal. I have to have 3 surgeons with my op too and your surgery sounds a like like what I will be having. Im just trying to gear myself up even though I have no clue to when they will finally get me in!!Many thanks

Bluesea7 profile image
Bluesea7 in reply to Bambi103

I was told they took it all out as I was pre menopausal, and after opp they say you go straight into menopause after both ovaries removed full hysterectomy and with that if any trace of it it should disappear, they put reinforce stitches to my bowels and bladder no bag I was lucky it didn't spread to my kidney, you have to have lactosative after for about a week, it depends on how far it has gone up your bowel , you will have a cavitar fixed for a day . Hope this helps

Bambi103 profile image
Bambi103 in reply to Bluesea7

This really helps. Thank you so much. I do worry to if it has spread as it has been over a year and a half since my last MRI. Im already in menopausal state with HRT. Im currently having Prostap injections, well for over a year now. It just feels like groundhog day!! Again thank you .

Bluesea7 profile image
Bluesea7 in reply to Bambi103

All the best to you . Hope everything goes well for you.

Bambi103 profile image
Bambi103 in reply to Bluesea7

Thank you, me too lol.

Bluesea7 profile image
Bluesea7 in reply to Bambi103

You also have a injection for blood thinner they will show you how it is done on your belly , and you do that for a month or more at home, you might prefer to sit in arm chair when at home with extra cushions, pillows ect for support and you might need them for bed as well to slightly raise your self.

Bambi103 profile image
Bambi103 in reply to Bluesea7

Wow, I didn't know that... thanks for the heads up. Luckily my husband can support me with the injections 😬😬😬

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