Hi all, This is the first time ive posted... - Endometriosis UK

Endometriosis UK

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Hi all, This is the first time ive posted on here, but I'm wondering if anyone can help me. In 2009 I was diagnosed with Endo.

Marie-B profile image
14 Replies

I had a Hystorectomy and they left my ovaries in. Recently I have been in pain again. My Dr has said my Endo is back. I am at the Gynaecologist Next week. All I want are my ovaries to be removed. Do you think when I ask at hospital, and tell them I want it done asap, Will they listen to me and do it sooner rather than later? Im sick of the pain now, and my mum died of Ovarian Cancer so it will take this away also. Thanks for looking x

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Marie-B
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14 Replies
Bokkie profile image
Bokkie

Hi Marie-B. The subject of the removal of ovaries generates a split opinion on this forum as you will see if you look at previous posts on the subject of Oophorectomy. The problem is that it appears to be a catch 22 situation. From what I understand, removal of the ovaries does stop Endo in most cases, BUT that is only if there is NO HRT given afterwards. HRT feeds the Endo unfortunately, so you are very unlikely to be rid of Endo if you are on HRT, even without your ovaries, as the HRT 'replaces' them. Even after menopause, apparently the ovaries are still required because the hormones that they can still release will help protect you against bone problems, heart problems etc. which is why HRT is usually given if your ovaries are removed. With no ovaries or HRT you could be leaving yourself open to all sorts of future health problems. Also, I understand that most doctors would not consider removal of ovaries pre-menopause if they are healthy. However, as your Mum had Ovarian cancer, that might be a pre-requisite for you. If you are near menopause age, removal might also be considered but the possible future health risks associated with no HRT treatment would have to be looked into. It is such a difficult decision to make. If you do you are damned and if you don't you are damned! Hopefully you will get some other replies from ladies that have had removal of their ovaries WITH and WITHOUT HRT treatment afterwards, who will be able to tell you how it is for them. I may possibly have to decide whether to keep my ovaries at some point and I am also interested in other ladies' experience of this. Good luck! x

Marie-B profile image
Marie-B in reply to Bokkie

Thank you for your reply. I will certainly think about this x

Dillweed1 profile image
Dillweed1

I'm due to have an oopherectomy in a few weeks but am desperate to avoid it and trying to find someone to do excision and remove cyst on left ovary. How old are you? It's a big decision to remove the ovaries and then have hrt or not. I'm not convinced removing body parts is the best option. I had my uterus removed 2 years ago and like you the endo pain returned with a vengeance. Everything I've read leads me to think endo pain can still return even without ovaries .

Marie-B profile image
Marie-B

I am 36. They did say that in my 40's they would definately be taking my ovaries out because of the high risk of OC. So I was really wanting them out because of the pain anyway and though that a few years earlier wouldnt matter. The dr said the Osteoarthritis and blood pressure ect and menopause can be treated but control of the pain is harder. After reading Bokkie's comment I will certainly think a bit more about it though. Im sick of pain now though.

Dillweed1 profile image
Dillweed1

I know how you feel re pain but you are very young to have this done. A difficult decision.

Impatient profile image
Impatient

Your age is a factor. You can certainly ask for 1 ovary to be whipped out - mke sure it is the ore troublesome one. Keeping just 1 ove left is going to avoid any need to be on HRT for years.

Whether you have one working ovary or HRT every day - they will both be feeding any residual endo.

A Hysterectomy is only of any use IF all the endo is removed too.

A better surgical option would be to have a really decent asault on getting all remaining endo excised (cut out -not lasered). and get rid of one ovary.

I've only got one left and am absolutely fine with just having the one and not relying on HRT.

HRT is not a perfect substitute for an ovary.They are such complex organs, they are involved in protecting the heart and bone growth and density and a multitude of other things which are of benefit to you.

Have you been checked for the BRCA1 and 2 genes. If negative then you are at no greater risk of OC than any other average woman with endo.

If you do test positive for BRCA 1 or 2 , then yes on balance it probably is worth switch to HRT and losing both ovaries. Don't rush to surgery for oophorectomy till you know if it is really necessary.

If BRCA negative then much better to have surgery to remove the remaining endo and say bye bye to one ovary but keep one in there working well and looking after the rest of you.

Marie-B profile image
Marie-B

It is definately

Marie-B profile image
Marie-B

Thanks Ill ask about that it sounds like a better plan to try to get rid of the endo once and for all. Its took its toll on my love life also it really hurts to the point of crying its ruled my life!!

in reply to Marie-B

This may be quite controversial, but my opinion is that as long as you have all the facts and can make an informed choice....you should request the treatment that YOU want. Including asking for your ovaries to be removed.

Because you have a family history of ovarian cancer, that also adds weight to your decision to have your ovaries removed. (If that's what you choose).

Also no one knows what the pain of Endo is like for you and how it affects your life. I can tell you what my pain feels like (bloody awful !) but I could never understand the pain you are in.

Best wishes,

Barbara x

Marie-B profile image
Marie-B

Thanks hun I will definately be thinking long and hard from now until Thursday and whatever I decide, Ill tell the Gynae. Ill keep you all informed as you have all been so kind and helpful. x

It might be worth considering a mire radical excision surgery called 'Total Peritoneal Excision' before removing ovaries. Your choice ofcourse but I wad advised removing the ovaries reduces lifespan by 9 years. Difficult decision for you especially with family history of cancer xx

Ladybex profile image
Ladybex

Sorry to hear this.... You MUST insist... I was diagnosed wrong for 3 and a half years by my GP and consultant.. Just keep,chasing them cos if you need this operation you want it done ASAP. And make sure you tell them your mother had it.

Let me know how you get on and I wish you all the best. Ann

Gudenkst8 profile image
Gudenkst8

I'd recommend having ovaries removed, family history, mainly cause endo is back. I had 4 laps for endo & a TAH; took all out; shocked they didn't 4 u let me know what happens; prayers 4 u

Marie-B profile image
Marie-B

Thanks Guys i think for my piece of mind im going to go down the removal route. Hopefully my gynae will refer me after thursday. Ill let you know how I get on x

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