Hysterectomy : Hello. I hope you are having... - Endometriosis UK

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Hysterectomy

BeeBumble profile image
11 Replies

Hello.

I hope you are having a peaceful Saturday. I wanted to ask for advice from any of you that have had, or have considered having, a hysterectomy for Endo. I am at the stage where we are considering this as my next move but there seems to be a lot of conflicting information out there. I am 35.

Thank you for taking the time to read this.

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BeeBumble
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11 Replies
Shell-C-H profile image
Shell-C-H

Hi I'm 37 and I just had pre op for hysterectomy just waiting on date for op. The consultant said to me it's the only option left as they have tried me on everything. I wasn't sure about it and taken alot of time to get used to the thought of having it done. After speaking to some people in hear and also friends of friends who have had the hysterectomy there are alot of positives I have heard. Main thing is going into menopause if you are having everything removed. I am very nervous and scared because it's a big op but fingers crossed in the long run it be worth it.

BeeBumble profile image
BeeBumble in reply toShell-C-H

Thank you for replying, Shell! I will say a wee prayer for you that everything runs smoothly. I this op brings you much better health and happiness. Take care :).

TJ2021 profile image
TJ2021

Hi,

I am 32 and currently sat in the hospital after having a total hysterectomy! I have tried everything possible prior to this so felt it was needed. I was lucky enough to naturally conceive a child and then decided that life was too short to not have their surgery and live a pain free life.

It is a choice only you can make, you know how much longer you can cope with the pain and for how much longer!

Best of luck!

K2023 profile image
K2023

Hi, I had a complete hysterectomy everything including cervix removed .This was 4 weeks ago now.The decision was out of my hands things had become so bad ,that he said I have no option.I was devastated even though I’m 48 and have suffered with this god awful disease since 17 I still wasn’t prepared for hysterectomy . The surgery was extensive 8 hours long and without my complications it is classed as major surgery .It takes patience and a lot of listening to what your body is telling you after ,you can’t push on and ignore when your over doing it .I still have a long way to getting back to some normal but I will say on the hysterectomy side the healing wasn’t as tough as I thought it would be 3rd week moving and bending was easier .The one thing the consultant drilled into me is I’m not to have HRT ,he said the Eostregen can’t be taken without progesterone and it would put me back to where I was if I took any hormones.He also mentioned nerve damage as Endo wreaks havoc on them so you can be left with phantom pain.The menapause has been kind so far I can handle the flushes they don’t seem to bad and regarding my emotions I feel like I’m in a good place ,so I think personally hysterectomy is like rolling a dice but personally my gut instincts tell me it was the right thing to do .I hope this helps somehow and that you find relief if it’s the step you take .good luck best wishes .xx

JOSANDY40 profile image
JOSANDY40

I feel you are very young to consider a Hysto yet. Though there maybe possible positives there are also several negatives.

Please read up on the this type of Operation.

It might not solve the Endo and give you bladder or bowel issues. It is a major Operation.

Rainbow2468 profile image
Rainbow2468 in reply toJOSANDY40

I second what you say. Plus lots of other complications and nasty side effects.

JOSANDY40 profile image
JOSANDY40 in reply toRainbow2468

I wish I could take HRT but cancer and this type of Endo is a no go! Managing but I don't know where it leads. Originally I was told it would go at menopause but no it's still growing, still causing pain. Yes a improvement but still not free of illness or pain. My Estrogen still higher than average!!!

Cheeky12 profile image
Cheeky12

Hi I had my hysterectomy including both my ovarys 2 years ago at the age of 44. I felt it was the right thing for me at the time as I had enough of the endo pain I was suffering and was willing to give this a chance for relief. I felt better straight away. I do sometimes have some mild pain which is probably scar tissue. And my mood and energy levels can change daily because of lack of hormones. For me this is more manageable than constant endo pain. I do take HRT estrogen and progesterone to help with my hormones.

I hope you find relief soon what ever you decide. xx

Sars28 profile image
Sars28

I had a hysterectomy last oct best thing no more periods but full blown menopause. It has taken a while but things are finally getting better.

Marcia71 profile image
Marcia71

I had a hysterectomy in 2015 and worst thing I ever did. It of course stopped the heavy periods caused by adenomyosis but as the endo was left as I was told it would die off without my ovaries I was left in worse pain as the endo was sewn into vaginal vault and left to keep growing. So my pain just got worse and worse. So if you have adenomyosis then yes a hysterectomy will help. But if it is for endo it is unlikely to do anything to help. The endo needs excision at same time. And if ovaries removed then take care with hrt that it doesn’t just feed endo either. Combined hrt is best option to give that the best chance of not feeding any remaining endo.

BeeBumble profile image
BeeBumble

You are all amazing - thank you for taking the time to reply and for sharing your thoughts and experiences. I have taken all of your advice on board and will continue to research the best way forward.

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