Can endo return after total hysterectomy?

hi, I had a total hystorectomy in Dec due to endo and I was feeling great but the last few weeks I've been getting the same old pains back and feeling tired all the time 😩

12 Replies

Hiya had a hysterectomy in April this year and none of my pain went, I have more pain now than I did before the op. I still have a slight monthly bleed which is confusing. My endo nurse thinks it's granulation but I'm not convinced as it happens each month. I have an appointment at my gp tomorrow and she's going to do an examination - hopefully I will know a bit more as to what is going on.

I hope you're pain settles xx

I have the dull ache underneath again the pain in legs, belly and back and I the tiredness is just unreal, I'm praying it's nothing. Hope you get some answers tomorrow xx

I'll let you know how I get on xx

Dont quote me on it but I think If you have endo affecting other areas ie bowel, poch of douglas etc and it not been dealt with then you will still get pains/symptoms as the hysterectomy only gets rid of that effected area. Also if you didn't have ovaries removed and they affected ditto.

I hope it is just settling down pains and everything sorts itself soon for you. Bless ya this blooming endo just has its ways of being a right nuisance whatever we try. x x x

Hi, I had a total hystetectomy in February this year and in the last few months the pain has come back on the right side and also back and leg pain and insomnia. I am exhausted. GP said " endo can't return after a hystetectomy" and I am fed up of people saying I look well when actually I feel tired and in pain. I don't know what to do. It's really getting me down. I see Consultant soon and dreading it due to his attitude. Am worried he will be dismissive and discharge me. Please keep in touch and let me know how you do. :)

Im no expert but from what I have researched there is no procedure that can guarantee that endo will not return. I've known others with the condition who have had major operations and its come back. Remember there is no actual cure for endo, just management strategies.

Hi I've just seen my gp and she thinks not all my endo was removed and that it's hard to get it all so always a chance of endo remaining. She has taken swabs as there was a white discharge when she examined me. Also my blood tests I had done last week show low testosterone, low folate and ferritin levels, also showed I've got problems with my liver. I've got have my bloods rechecked to see what's going on xx

Oh it's awful isn't it, it's just one thing after another, since I've had my op I've been told i have crohns but I'm not convinced, I'm bk at the hospital today with that so I might ask them. I really can't cope with going back to how I was before. I really hope they find some answers for you xxx

Also the doctor felt my duplex kidney on the right? This has only come to light since I had a right stent fitted with my hysterectomy. I've had plenty of kidney scans previous and it's never showed duplex kidney, also my surgeon never saw any signs of duplex kidney when he inserted the stent. Does anyone have any idea what this really is, as I'm convinced it's not duplex kidney as it would have been picked up before on previous op and images I have had done. Xx

Hi all

I too had a total abdominal hysterectomy in Feb 2015 and had ovaries removed. I've been in pain since.

First gynae was under impression having taken ovaries endo would die off. It doesn't. I had a further lap to remove it and adhesions. Had endo confirmed on pouch of Douglas and bowel. That gynae felt endo causing 50% of pain and adhesions other 50%.

In April this year had it confirmed endo returned so am awaiting next gynae appt but this time I've been referred to BSGE clinic as I only found out about them from reading here and only ones I now trust.

I'd insist GP refers you to BSGE clinic. Mine needed real persuading as kept telling me to just put up with pain!! I used that as clinic has pain specialist as well gynae's and other specialists to get my referral.

Good luck this seems to be a life long journey we are on

If you,ve had BOTH ovaries removed then speak to g.p its very unlikely to be endo .. Early menopause comes to mind!!

ca-54, I'm not entirely sure why you would say that it is unlikely to be endo if both ovaries have been removed. Sarah has symptoms suggestive of deep endo potentially affecting the uterosacral ligaments which as you will know is nodular in nature and non-responsive to hormones and so not affected by oophorectomy or GnRH agonists.

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