On waiting list for hysterectomy ! - Endometriosis UK

Endometriosis UK

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On waiting list for hysterectomy !

Bekie84 profile image
12 Replies

I saw my gynae yesterday and she has decided hysterectomy I'm 30 and I'm so worried but know there is nothing else now for me and whilst they in there tey will remove all lumps I have of endo again

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Bekie84 profile image
Bekie84
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12 Replies
Impatient profile image
Impatient

Do try and keep one ovary behind. It will save you from needing HRT for decades to come.

It won't make a difference to any endo left behind whether it gets a supply of hormones from the ovary or HRT it can still be active, so keeping an ovary will spare you the hassle of taking HRT every day for years and years. One seemingly small detail and yet can make a massive difference to your long term heart health and bone density . Very best of luck with the op.

Bekie84 profile image
Bekie84 in reply to Impatient

Thankyou so much I didn't realise you could keep one but it makes sense I will ask on my pre op thankyou again means a lot to get some advice I'm so worried I'm still youngish lol xxx

Blondedia profile image
Blondedia in reply to Impatient

I saw my gynaecologist yesterday. He wants to do a full hysterectomy too. If he takes both ovaries out, then it will prevent endometriosis returning, but I will need HRT.

moomoo8 profile image
moomoo8

Hi Bekie84! :)

Can I just ask are you sure you have explored everything else, and have you had a second even third opinion?

I'm seeing a Consultant at one of the BSGE NHS Endo centres, firstly I would definitely recommend you get referred to one if there is one close by as they should know a lot more about Endo and what options are available to you. bsge.org.uk/ec-BSGE-accredi... your local health boards have to fund you to go there as they are special Endo centres.

He does not think a Hysterectomy is the answer to Endo unless there is adenomyosis in the womb and therefore does not routinely do them to "treat" Endo. He also feels that many women are having Hysterectomies unnecessarily as most doctors do not truly understand Endo and it is out of date thinking as it can still come back in some cases after a Hysterectomy.

Also Mr Trehan who is seen as the best private Endo Consultant in the UK says:

"A hysterectomy is not the solution to treating endometriosis: if childbearing is desired and the uterus is not diseased, a hysterectomy can always be avoided. Mr. Trehan has demonstrated that a hysterectomy should only performed if childbearing is completed and the uterus is diseased (eg. adenomyosis), and even if a hysterectomy is performed, thorough removal of all endometriosis must still be performed."

endometriosis-consultant.co...

It's just seems to me that 30 is very young to have a hysterectomy if there are other options?

Take Care xxx

moomoo8 profile image
moomoo8

Maybe have a look at this other recent thread too:

healthunlocked.com/endometr...

Mistiek profile image
Mistiek

Hi bekie,

I'm only 36 and I have a lap on the 29 sept, but have just been diagnosed with adenomyosis. I will need a hysterectomy at some point after this.

I am sooo looking forward to it. I have family and friends who have had hysterectomys for one thing or another and have never looked back. I have one friend who had endo and cancer and she said it was the best thing she ever did! She had cancer so had no other choice.

I'm still not sure what they will take out and am torn between asking them to leave an ovary or not as it seem they hurt the most. I think if I am found to have it one both ovaries (I know it's on the left) then ill ask them to remove it all.. I want to try natural hrt like my mum, she has no issues. She did keep on ovary in however but I have been told by my coleauge who had the hysterectomy for cancer that the ovaries die after 4 years once you have a hysterectomy anyways and menopause kicks in. For me the chance of it coming back is a nightmare thought... so do some research about keeping your ovaries and natural hrt beforehand so you can make an informative decision.

Good luck xxx

Bekie84 profile image
Bekie84 in reply to Mistiek

Thankyou so much I will definately do some more research it's such a big thing and I just need to make right choice as I have 3 children and a husband that rely on me I have been sterilised as cause of the endo my last child was born at 29weeks which was far too early and very scary so all my child bearing is done and I have tried everything from injections to tablets to surgery and it's spreading so fast and I'm fed up with it so will do some research thanks everyone xxx

Mistiek profile image
Mistiek in reply to Bekie84

Oh wow... that's really rough! I got sterilised last year as me and contraception just don't get on. Hence my nervousness to take hrt. I also can't go on depo etc to slow it down etc.

I can totally related to you feeling the way you do. It is a huge decision but if you feel it's the rug HR choice don't let anyone tell you differently. There are lots of worries such as bone density etc. But it can all be tackled and with the right supplements it can be avoided some what. My gran had an early hysterectomy kept her ovaries and has been on hrt ever since. She is 74, after this she still has compete osteoporosis! So all the hrt and keeping her eggs did not help. But it's never stopped her! She is the coolest hippest and fittest gran I have ever seen!!!

Beside hrt she takes no other Meds, needs nothing else. No heart conditions, BP problems etc... nothing !

So it's never a simple keep the eggs it avoids bone density etc...

Private message me if you want someone to lean on who is in the same boat and we can talk to each other about any new research we find etc

Xxxx

in reply to Mistiek

Wow that brilliant your Nan is doing amazing . I am waiting to have both ovaries out to stop the pain and very nervous it’s nice to hear good news on here xx

Hello.

I have had Endo for 22 years. I also have severe adenomyosis. My hysterectomy is next month.

I hope your surgery goes well.

Bekie84 profile image
Bekie84 in reply to

Good luck with your surgery keep u updated how you are xx

Bekie84 profile image
Bekie84

Thankyou I really am up and down with it there is so much to think about x

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