Womb removal for controlling Endo? (Unable to have ANY hormones)

[sara75]

Hi, it's just a hypothetical question as I don't want to go down this route, at least for a long time. I can't have hormones at all so can only get the endo removed via lap when it gets too bad so my endo isn't controlled and is left to it's own devices to grow and grow.

Has anyone ever had their endo removed and at the same time had the womb removed but kept the ovaries? I know oestrogen is still produced by ovaries but if you can't have periods, surely the endo can't build can it?

Again I'm just talking about removing the womb only. Just curious that's all. Thanks for any replies ladies. Sara xx.

[stevieflp]

Hi - I would only consider a hysterectomy if you have suspected adenomyosis or some other gynaecological problem such as fibroids or heavy menstrual bleeding. It would not control endo in the peritoneal cavity at all.

The experts believe that Endo (which is generally of the peritoneal cavity) and Adenomysis (endo like growths in the uterine muscle) do not have the same origin and do not necessarily migrate one into the other and so are separate conditions; albeit ladies who have peritoneal endo, do sometimes have adenomyosis also. Apparently, medical training for doctors relating to endo is still based on research undertaken 50 years ago and much of that original thinking is now considered flawed/out of date by the real endo experts - but still remains the basis of general medical training. Hence you still get gynaes saying hysterectomy cures endo. Hysterectomy is only useful for Adenomyosis, not for peritoneal cavity endo. Incidentally both of these conditions have different pain symptoms/characteristics but most gynaes lump it all together. Removal of healthy ovaries is also not now recommended by the endo experts, not for endo purposes anyway, only if the ovaries have ceased to function due to damage or something more serious like ovarian cancer.

I recommend you have a look at Mr A K Trehan's website which is very informative.

I can also recommend the following books:

Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook (top USA Endo Surgeon Consultant)

100 Questions and Answers about Endometriosis by by Dr David Redwine (retired top US Endo Surgeon Consultant (acknowledged as world leader in the field)

All best wishes x

[Lillybob]

Hi there, I developed endo after having my uterus removed for adenomyosis! It's all over my bladder, cervix and right pelvis, gotta have drug treatment and cervix removed so I guess your answer is no, don't do it, I'm waiting for my follow up appointment I don't know yet what's happening with my ovaries. It's an infliction isn't it! Good luck. Of

[sara75 in reply to Lillybob]

Oh well, there's my answer then! I hope things go ok as they can with you, you'll have to let us know? Good luck to you aswell, and thanks stevieflp for the info. Thanks ladies, Sara xx

[Impatient]

Sorry to bring you bad news but the endo that remains doesn't know the womb is gone. So it will still react to any hormone signals just as the womb would have done if it was there.

On the bonus side there won't be any spread from the uterus by backflow bleeding - but that doesn't stop any existing endo from shedding its lining and bleeding - and spreading more endo cells elsewhere.

But as that is not the only route of spreading endo, it's not the end of the story either.

No one knows all the ways endo spreads. There is no cure for it, but every bit found and cut out is going to help in your battle.

Some theories have endo transferred through blood to more remote locations, some theories have that endo cells are also found in strange places from before you were born, lying dormant for a long time till told to get active by hormones.

So while it certainly will help to have all visible endo removed at the same time as the hysterectomy - it may not kill off the endo entirely.

Oestrogen is not only produced in the ovaries - men have oestrogen proving it is also produced elsewhere in the body too - Tummy fat is a very good source and storage for excess endo. It may not be a huge supplier like the ovaries but it sure is enough to keep endo going. And in the event both ovaries are removed too - then you must go on HRT which just replaces the ovaries in suppying oestrogen.

You body does need some of it for bone strength and for heart health too.

The main benefit of a hysterectomy is stop you having periods long lasting heavy and painful, but that only takes away the uterus -leaving the endo lesions to carry on having their own little periods inside you where ever they are located.

[sara75 in reply to Impatient]

Hi Impatient - hope you're ok. Yeah, I get you, so even if the endo is removed, the 'roots' could still be there which would respond to the bloody stupid hormones. Arrrgh! Fed up! Took years for my endo to get very painful so when I had it removed in apr last year, I thought it would take years again to get like that ...not so - the symptoms started returning by 3rd or probably 2nd period). So I totally understand what you're saying there.

And if tummy fat is a good source, then that explains a lot with me lol - all my fat seems to go there! My gerbils enjoy punching it with their heads when their on my knee lol, usually happens when my endo is worst!

Thanks again Impatient. Sara xx