Full Hysterectomy due to Endo: Hi, I was... - Endometriosis UK

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Full Hysterectomy due to Endo

Suze1974 profile image
5 Replies

Hi,

I was diagnosed with endo in 2005, had various surgeries to fix and a 6-month round of zoladex.

I'm now having to have a full hysterectomy due to endo and other gyne issues. Also may end up with a second surgery due to the belief that my uterus is also plastered to my bowel.

Have any of you had to have this operation? I am lucky enought to have been able to have 2 beautiful children so the removal of the anatomy (while sad) is manageable from a mind set perspective. However, I have read numerous scare stories in the Internet that says I will be a sexual mute once I have the op with no ability to be aroused or have any sexual pleasure or release... That would probably put a whole bunch of strain on my marriage and I'm not prepared for that to happen.

My operation is on 27 June 2016 with Andrew Kent - Royal Surrey. I would be really pleased to hear from anyone who has had that operation and can assure me that you don't become just 'numb' from the waist down afterwards. I'm so terrified of this.

Also, if anyone has been operated on my Andrew Kent, would be good to hear from you too. This is my first time going under his knife.

Thanks in advance,

Susan X

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Suze1974 profile image
Suze1974
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5 Replies
Tboag profile image
Tboag

Hi there, I had a hysterectomy in July last year for adenomyosis I also have Endo, and had excision surgery in march last year, unfortunately I'm still in pain and am now awaiting another laparoscopy with a bsge centre, as I believe my surgeon has missed endo someplace ,

Due to still feeling unwell I don't make live as often as we used to not do I enjoy it as much, but thus is due to pain after and I still get aroused and still have Orgasm's but it sometimes.e s can take abit longer

The only thing I would say is make sure all your endo is removed at the same time, so you can get a good chance of getting the best from the hysterectomy

Good luck xxxx

Suze1974 profile image
Suze1974 in reply toTboag

Hi there and thanks so much for responding. I'm sorry you're still in pain, that must be disappointing.

He is going to remove everything and the endo in the one op, but he thinks he might need to do a second op with a bowel surgeon if his suspicions of the uterus being stuck to the bowel is correct.

I am so happy to hear that you are still able to feel aroused and have an orgasm 😁. My consultant is supposedly one of the best in the country and is an endo specialist so I really hope he gets it all!

All the very best with the remainder of your recouperation and best wishes for your next op.

Susan x

Suze1974 profile image
Suze1974

Thanks for replying! I'm 42 with a history of endo and mennoreah. This has been managed in the past with surgery, a 6 month course of zoladex and 2 insertions of the mirena.

I have had a consultation with the consultant who has told me that I have a problem with my cervix (mirena coil is stuck on some nodule on it due to previous laparotomys) I need the tubes, ovaries and uterus out. Due to the pain I'm experiencing he thinks it's because the uterus is stuck to the bowel. He explained that he won't know for sure until he operates. If it is, he will take out the endo and what he can and he and a bowel surgeon can do a second op later.

I'm pleased with what you said about the sex feelings and I will make sure I point it out to him when he operates 😊.

Susan x

KSvedenmacher profile image
KSvedenmacher

My consultant has advised me that if he needs to operate on my rectum he will have to do that in a separate surgery as my cervix will be removed and there is then the risk of the wound of the rectum to heal against the wound of the vagina, fusing both organs together which makes sense to me and which I am not willing to risk. There is no indication that I do have endometriosis on my rectum, but that is something he made me aware of.

Suze1974 profile image
Suze1974

Thanks for this. He has done a test which inserted a camera into the cervix to have a look around. I had a few scans done but no MRI. I don't know what that accredited centre is? I'm being seen at the Nuffield Private Hospital under BUPA by Andrew Kent. He seems to be an expert of the endo surgery. Have you heard of him?

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