Endo after radical hysterectomy? ?

Hi! I had a radical hysterectomy in January due to stage 4 endi. 6 months later, I am feeling the same pains as of before surgery. Is it possible for the endo to be back? My doc did tell me he didnt get it all because it was attached to my walls.. I am on a hormone cream of progesterone and estrodial. Altho am very bad and remembering to use every day. I am tired, get headaches and in alot of pain most days again. Does anyone have experience with my situation? Thank you in advance!

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  • Hi I had a hysterectomy last September- I too had stage 4 . Did you have your ovaries removed? My doc told me I had to have both out as if either were left the endo would return.

    Sadly I think as your doc said he didn't remove it all - the pain you are getting could be from the remaining endo.

  • Hi love I had an oophorectomy in 2006 to remove the left one then the rest as in my womb and right ovary was taken out in 2012. The hrt caused my endo. It was then they told me the truth .

  • Hi - can I ask how old you are, where you had endo, what area of the UK you live in and was this done in general gynaecology or in a specialist centre?

  • I'm in Dorset I saw a gynaecologist in the royal Bournemouth he was very good and thorough. I'm 43.

  • Oh - sorry Belle. I replied to you accidentally instead of the original poster. I know postmenopausal endo well. They never found any of mine prior to hysterectomy and I was only daignosed at age 51 when I had stage 4 after oetradiol implants. I had a massive aggressive endometrioma that had ruptured and was warned to expect ovarian cancer from a remnant on ultrasound as it looked nothing like any endo he had seen. It was all endo but was incompletely removed in general gynae and I was finally seen by a specialist at age 55 and found to have stage 4 everywhere even though I had stopped HRT 7 years earlier. Post menopausal endo produces its own oestradiol very efficiently so was now going well under its own steam. I had it on bladder, ureters, bowel and was packed with adhesions and had the full works to include total peritoneal excision. Whilst this might be rare, as you also know the possibility of post menopausal endo should never be excluded. I hope you are doing fine now. xx

  • Hi that sounds awful. Mine wasn't exactly the same but the hrt that caused my endo was estradiol I'd go back to your gp the hospital told me that taking that or any hrt pill can bring it back.

  • Hi - can I ask how old you are, where you had endo, what area of the UK you live in and was this done in general gynaecology or in a specialist centre?

  • Belle I am on estradiol 37.5 and I'm very anxious about endo returning there is a lower dose of 25 I may give a go. I can't manage without hrt at the moment. How did you know yours was back? X

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