Possible return of endo :-(

Hi all. Two years ago I ago I had a TAH for adeno and endo. Dr said that he thought it was all gone but there is a chance some was missed :-(

Well I think it was. 5 weeks ago I ended up being admitted to hospital with pyelonephritis. Ended up back in with a complication and pain constantly. 3 weeks later and a stupid amount of antibiotics I am still in pain and have the dreaded swollen stomach. I saw my urology consultant last week who mentioned that I had a haematuria with no infection. His reasons for this are my bladder (to which i had a cystoscopy today which shows a clear bladder), a kidney block even though ct and kidney functions are normal or that endometriosis has returned despite my TAH.

Has anyone else who had a hysterectomy had this awful thing return?

6 Replies

  • A hysterectomy doesn't cure endo. So I would say some was missed.

  • Did you have your hysterectomy carried out by an Endo specialist? Did they carry out excision of Endo ar the same time ?

    Hopefully the answer to the above questions are Yes.... But unfortunately Endo can return especially I'd Endo was missed.

    Have you asked if it is possible that adhesions could be the cause of your pain ?

  • Yes the adhesions could cause pain but with the blood in my urine my consultant said it is unlikely x

  • Hi - I see from your previous posts that there were concerns about your bowel prior to the TAH but this apparently turned out to be just adhesions. Unfortunately if this was done in general gynaecology there is a chance there was hidden endo and certain forms of endo affecting the bowel can't even be seen at a lap. In a case where bowel involvement is suspected an MRI should be carried out prior to surgery to map the pelvis. You had to have your TAH for adeno but unfortunately this doesn't cure any remaining endo as it can be stimulated by HRT and by oestrogen produced in the lesions themselves. Superficial endo may become inactive after TAH but more established lesions may be more likely to continue after TAH. Unfortunately there is no predicating in any woman. With suspected bowel involvement you should have been treated at a specialist endo centre and I suggest you request referral this time. Have a look at my post on how to find a centre.

  • Hi Lindle. Thank you for your post. Looking through the wealth of information you posted is very helpful. The concerns over my bowel were that there was endo but the adhesions were extensive so there could in fact have been hidden spots.

    I didnt have an endo specilaist perform my surgery but I had a bowel and urologist present due to having a malrotated pelvic kidney.

    My consultant performed a mri prior to my surgery.

    I am concerned that the endo may have come back and is hidden by the adhesions as these were seen almost everywhere.

    Thank you for your reply..it was truly informative!

  • Hi - adhesions should be removed at the time of excision so hopefully a specialist centre will be able to treat you thoroughly.

You may also like...