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Endo Support After Hysterectomy Endo Support After Hysterectomy

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  #1  
Unread 01-08-2021, 11:05 AM
Endo Support After Hysterectomy

Hi - I was diagnosed with stage 4 endo / adenomyosis / frozen pelvis / PCOS and had a hysterectomy in April 2015 to remove uterus and cervix. Oophorectomy to remove both ovaries in December 2016. Follow up surgery in December 2017 to remove additional endo and ovary remnants. Fast forward to present. I have recurrent endo symptoms incl. pelvic pain, weight gain and now pain in left leg. Sexual intercourse is still uncomfortable, as well as, bowel irregularities. I have not entered menopause or symptoms of.

I feel like I know my body pretty well and would be confident in saying I think my endo is still present.
My dr cannot see me until March , so I am trying to determine if endo recurrence is common with Stage 4 patients.

Thank you for any feedback !
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  #2  
Unread Today, 07:52 PM
Endo Support After Hysterectomy

  Quote:
Originally Posted by Stage4Journey View Post
Hi - I was diagnosed with stage 4 endo / adenomyosis / frozen pelvis / PCOS and had a hysterectomy in April 2015 to remove uterus and cervix. Oophorectomy to remove both ovaries in December 2016. Follow up surgery in December 2017 to remove additional endo and ovary remnants. Fast forward to present. I have recurrent endo symptoms incl. pelvic pain, weight gain and now pain in left leg. Sexual intercourse is still uncomfortable, as well as, bowel irregularities. I have not entered menopause or symptoms of.
I feel like I know my body pretty well and would be confident in saying I think my endo is still present.
My dr cannot see me until March , so I am trying to determine if endo recurrence is common with Stage 4 patients.

Thank you for any feedback !

Hi, have you gotten any response yet? I just saw it myself. Did you by chance have excision of your endo with a specialist or just had a general gynecologist? If not a specialist it's highly likely they did not sufficiently and effectively remove all endo. A specialist will cut it out from the root and search for endo in places that general docs don't look for or are unskilled to remove. If they just burned (ablation) the endo they saw, it is very likely it will grow back. And unfortunately, some will try to pass it off as they got everything and know what they are doing BUT they don't. Unless they specialize in Endo there are too many factors that general docs miss ie. location, color, visibility, etc. Especially bowel related. It is not a cut and dry by the book disease. Endo creates it's own estrogen so even removing ovaries it can survive on it's own. If you did have a specialist and excision it still doesn't rule out that endo can't creep back in or some was missed unfortunately. I had my hysterectomy last February due to adenomyosis and had excison of endo as well. I had endo removed from perirectal area and haven't had a painful BM or other digestive issues since! I was never stage 4, but had ablation in 2009 and by 2018 had learned about excision and fought to have it in 2020. Then later found out about the adenomyosis being a contributing factor. I haven't noticed any symptoms return yet but I know there's always that possibility. Sucks!
Sorry if you know all this already but if not hope it helps. I hope you get some answers and relief soon. If March is the soonest (and it's a specialist) maybe can you see their assistant at least to see what they suggest while waiting? If not a specialist, get on that asap because it will make all the difference!
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