Advise please : I had a full hysterectomy... - Endometriosis UK

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Advise please

Hdbarr profile image
11 Replies

I had a full hysterectomy 15 years ago and I thought that was it with endometriosis but for the last few years I have had pains where my ovaries used to be and now it's getting much worse is it worth going to the doctors or is there nothing else to be done?

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Hdbarr profile image
Hdbarr
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11 Replies
JeanOsborne profile image
JeanOsborne

Hi yes it's definitely worth it. Just because you've been through menopause doesn't mean you don't have endo. It can produce its own oestrogen so can sustain itself.

It's worth getting a referral to to a BSGE endo centre where if there is endo it can be excised. Good luck.

in reply to JeanOsborne

Would it still produce oestrogen on progesterone only birth control? I'm asking b/c I've been on for a month and a half and my pain is getting worse and worse. I don't have cycles b/c I take it all the time.

JeanOsborne profile image
JeanOsborne in reply to

Hi Hannah, yeah with severe endo it would. I had a total hysterectomy and ovary removal with excision in March , was put on livial two months later which didn't work for me so changed to Elleste solo which is oestrogen which is when my pain returned along with feeling like I still have cycles. Consultant now wants me to change to combined hrt . Apparently progesterone helps break down endo. But not sure if this is true.

He implied to me that he knew there was endo left so once I have gotten hold of my note I will be seeking a second opinion as he is refusing to help.

It would be a good idea like JeanOsborne said Endo profuces its own hormones. Are you on HRT? That could also cause it to come back again.

Ontop of that there's the possibility of scar tissue.

Hdbarr profile image
Hdbarr in reply to

Yes I am on a low dose of HRT so I know if I do go to the doctors they will stop that and I will have to cope with the menopause on top on the pain, I think that's probably the main reason I haven't been

katrina1234 profile image
katrina1234

I had a total hysterectomy 6 months ago and was on Livial HRT. The endo pain I had before op has returned. Recently saw Consultant who did not want to know about my pain, did not examine me. He just changed my HRT to oestrogen one and discharged me. I asked re endo returning and he said it wouldn't. But I don't believe him. He was so horrible. I don't know what to do.

Marcia71 profile image
Marcia71

I had hysterectomy and Ovaries removed in Feb 2015 and that consultant left endo behind believing it would die off - it doesn't!! Was on livial then changed to a combined HRT by menopause clinic but still in pain. Finally found a gynae that would listen to me and did lap to remove endo and adhesions and pain improved. But she put me on oestregen only HRT and endo came back!!

Now under BSGE clinic and they have me on a combined HRT but won't operate yet until I try it for a while.

So yea end can grow back after hyster and HRT can help it and consultants all have different opinions on whether it can or not. I'm yet to be convinced the BSGE clinic know best as they're happy to leave me in pain but at the moment I'll have to try and trust them.

Go back to your GP and get referred to a specialist at a BSGE clinic. Good luck

Saz13 profile image
Saz13

Hi it could be adhesions - I have them and they grow back like weeds. I also have ovarian remnant where it's "regenerated" after being removed but now not in the usual place it should be but central attached to vaginal vault and colon ! I believe all my endo is gone BUT the HRT did help the remnant and also cystic masses to grow, I also have what they say is a bulge - lower right , some Drs say hernia others don't know, I'm back to see bowel surgeon tomorrow and Gynae next week

Nmatthews profile image
Nmatthews in reply to Saz13

Hi hope you don't mind me asking, what symptoms do you get for ovarian remnant?, I've had hystrectomy & ovaries & endo excised but having cyclical pain like having a cycle again. Consultant has put me on prostap to knock all oestrogen out of me.

Saz13 profile image
Saz13 in reply to Nmatthews

Hi, I was having pains like when had cysts on my ovary previously and horrendous stabbing and pulling pains and pains radiating down into my groin and leg, I've just had my 6th injection of gonapeptyl to shut it down and it's took almost 5 to work but it has, I'm refusing to take HRT although they say I should take it but too scared to take it, next week I see them to see if can keep on them long term - I can have surgery but it would be 9th surgery snd I really don't want anymore even though I'm having pains and bowel issues from adhesions cos they keep on coming back

Also ovarian remnants aren't always easily removed xx

Hdbarr profile image
Hdbarr

Thanks for all your replies think I am just going to have to bit the bullet and go to the doctors X

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