Advice on radical hysterectomy - Endometriosis UK

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Advice on radical hysterectomy

Mrsobrien04 profile image
13 Replies

Hey,

So after major op 18 months ago I’m still suffering. I currently have the Mirena but that’s not making a blind bit of difference.

I’m 33 and have 3 children. My questions are about the surgical menopause that comes afterwards.

What will happen to Sex? It’s painful enough as it is but will I lose my drive and become a vaginal bag of dust?

And those who have had one was it beneficial and do you feel much better afterwards?

Karina

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13 Replies
Doggiedogmom1973 profile image
Doggiedogmom1973

Hello Mrsobrien04,

You deserve better than this! Hysterectomy is LAST RESORT material. You are far too young for a hysterectomy, and most likely you've been offered this, is because your surgeron doesn't have the nessasary skill set to even remove the endo properly, that must be still in you. The best advise I can give you, based on how much you understand whats happening to your body (which was certainly like me a few years ago) is to read this book: "The Doctor Will See You Now", written by one of the best endo surgeons in the world: Tamer Seckin, M.D. Seriously, this book will lift all your pain off your shoulders and feel like someone finally understands all the pain you're experiencing. He mentions in the book the 'gold standard' for treating endometriosis. And he'd have the answers to a lot of the questions you're asking. This is a book you can 100% trust.

All the best....xoxoxoxo

in reply toDoggiedogmom1973

I was 32 when I had a total hysterectomy, if you're in as much pain and constant bleeding as I was, you beg for it! Everyone is different and no book on this earth is going to take away the problems that come with endometriosis!

Mrsobrien04 profile image
Mrsobrien04 in reply toDoggiedogmom1973

I have an amazing surgeon and at a BSGE centre who has worked wonders with me so far. At the moment my options are running out and I’m very much considering a hysterectomy to improve my quality of life x

Doggiedogmom1973 profile image
Doggiedogmom1973

I beg you not to have a hysterecomy till you have read this book, and gone to the best surgeon available, as seriously, it a hysterecomy doesn't improve your pain.....that book will explain this to you....xoxoox

in reply toDoggiedogmom1973

I beg to differ on the pain front!

Your coil is feeding the endometrium still clinging to other organs (bowel, bladder etc), I had a total hysterectomy in 1992 (I was 32) and had symptoms of period pain for up to two years afterwards because I had HRT medication which was feeding it! It lessened with each passing year and I had nothing at all eventually. But you still have your ovaries, which I can't understand why when endometriosis clings to those! That will be another reason that you still have pain. How is your coil inserted if you have no uterus? I'm confused there, have you actually had the hysterectomy or was the major surgery something else? If you haven't, the coil is notorious for causing even more pain for endometriosis sufferers, have it taken out. But, for total pain control, I would have thought that the surgeon would take your ovaries too.

No, you won't lose your sex drive, but I would suggest having the coil taken out and taking a natural supplement, I took evening primrose, starflower oil and a product called Menapol, they helped with the hot sweats when my GP took me off HRT at 52, as well as the mood swings and other symptoms of the menopause.

I really do think that your ovaries are the cause and can't understand why your surgeon didn't give you a total hysterectomy with the reason being endometriosis!

Mrsobrien04 profile image
Mrsobrien04 in reply to

I had still have my womb and ovaries they removed the skin that covers the reproductive organs, my Fallopian tubes. A large recto vaginal nodule, Endo shaved on my bowel and other endo removed. Surgery lasting almost 6 hrs. I was recommend the coil to help with pain which returned 7 months after surgery.

in reply toMrsobrien04

Wow! All that and you're still in pain?! I can't understand them doing either (the surgery and the coil!). The coil is renowned for causing more pain, I know I suffered for 6 months before I begged them to take it out and like I said, the hormones feed the endometriosis, so I really can't understand them inserting it!

I have never looked back after my total hysterectomy. Yes, like I said, I had slight period pain for about 2 years, but nothing like I had before. It is YOUR body, YOUR choice, you have your children, so your age doesn't come into it, why suffer needlessly every month?

Don't worry about your sex life, I found a whole new lease of life in that area once I was free of the pain I suffered every single time! ;) Go for it!!

PixieDot profile image
PixieDot

I concur with JayneGP. All the time you have hormones in the body, the endo will also thrive whether you have surgery to remove - it’ll come back, it’s always there. I didn’t understand the surgery part of story. Feel happy you have three beautiful children and a ‘other’ half. I am 43, had a tough time with endo from age 17 - 28... I kept fit, did everything naturally since, was diagnosed with LS at 40.. never enjoyed sex anyway - LS and endo the issues. Hence forever single and no children... just to top it off very poorly in Nov 18 large endometrioma on left another on right; MRI... endo stuck ovaries to uterus, uterus to bowel (had a module at top of vagina and on bladder too). Had total hysterectomy with bowel shave on 4 Jan. Actually riding it out to let Decapeptyl wear off and doing the surgical menopause naturally Menopace with Botanicals and Liz Earle’s meno cake is really making a difference. For the endo to really go where the fab surgeons couldn’t I need to remain off HRT for at least a year. Up the weight bearing exercise and have good intake of calcium. I prefer to feel what’s going on with things internally. I was duped into trying the Mirena twice... ghastly, couldn’t sit, lie, awful, bled a lot. They also contribute to ovarian cysts, which is a known in the instructions. Don’t be afraid to do a lot of reading, The Hysterectomy Association is amazing ...good luck in your endeavours.

Mrsobrien04 profile image
Mrsobrien04 in reply toPixieDot

Thank you, I’m so sorry about everything you have been through ❤️

in reply toPixieDot

Wow! That's a lot to go through! Like I said to Mrsobrien04, it's YOUR body, don't let the medical profession dictate what happens to it. I can't believe that they recommend the coil these days, it's ridiculous for Endo sufferers!

Sludge78 profile image
Sludge78

I had my total hysterectomy a year ago at 40. I was probably at my sexual peak before hand and did suffer a loss of drive for a while, now taking testrol gel alongside my HRT and pretty good again, plus no pain during it! Whilst there have been some minor issues in hormone balance etc overall it was the best thing I ever did.

Mrsobrien04 profile image
Mrsobrien04 in reply toSludge78

Thank you for your honest reply

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