Is my endo back?: I had my hysterectomy... - Endometriosis UK

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Is my endo back?

aimeewils profile image
5 Replies

I had my hysterectomy almost 10yrs ago, I am starting to get pain again in the lower back it feels like endo pain & im suffering with bowel movements as I used to before. Can it come back after all this time. I have also been on buprenorphine & tramadol through this period, could that have just been masking the pain? Would like your thoutghts on this. I have purposefully not taken HRT's either fearing that this would trigger the endo again!

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aimeewils
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Em_2 profile image
Em_2

Did you have your ovaries taken out? I guess if they are there it's possible it's endometriosis? x

aimeewils profile image
aimeewils in reply to Em_2

Hi em, I had my ovaries removed! I have no idea if they left any endo when i had my hysterectomy & I never had my bowels or bladder checked. Im thinking it is endo but after such a long time its rearing its ugly head?

Em_2 profile image
Em_2 in reply to aimeewils

I've heard of it coming back if they leave ovaries or you take hrt but I'm unfamiliar what happens if ovaries are removed. Hope your consultant can get to bottom of it xx

I had my total hysterectomy (and ovaries) removed in 2004; was fine until about 2011 and now I'm registered disabled. The new consultant is of the view that some ovarian tissue may have been left and along with the endo being able to regenerate itself, assuming some is left, then this can cause problems. Hysterectomy is not a cure and it is only the last couple of years that this is being acknowledged even by specialists. It can help some - as with other treatments - but others may find that their symptoms continue. I'm on Prostap SR again (had it before about 20 years ago) and it seems to have reduced the severity and frequency of pain but not the pain in its entirety if that makes sense.

If you take painkillers regularly, you may also find that these mask the severity of pain you're feeling; it is one of the reasons that painkillers should be taken only with the onset of pain - although we've all done it where we feel a niggle (or to avoid the niggles coming) to avoid it getting worse, we down drugs. I now try to take the painkillers only when I'm actually in pain but sometimes that doesn't work either.

It's sad that this disease just seems to be never-ending; a few years respite was all I had although I don't regret it and would do it again.

Regards

aimeewils profile image
aimeewils in reply to

Maria

Many Thanks for your reply. You have confirmed my thoughts, I wasnt sure if it it could come back as you say the research into this is only just coming to light. Im going to see my GP on monday for the first time since I have got recurrent pain & want to be armed with correct information as you do get a tendancy to be fobbed off. I am gutted & hope its not but deep down I know! I have told my husband but not other family members & friends. I lost a lot of friends last time & family members were not great either not understanding at all. Im pretty scared to go through it all again but will fight just as before!

As you, I am thankful for the years of respite I have had & again would do it all over! I hope in the future you will get some respite once again to x

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