Endo after hysterectomy

[Snowstorm81]

I am 14 mths post hysterectomy and still getting endo flare ups. My consultant says it’s phantom organ syndrome- I’m struggling to manage the pain. Can anyone offer me some advice?

[angiecxx]

Hi i hope you are okay. I too had a total hysterectomy just over 3 years ago and I still suffer on a daily basis. Unfortunately hysterectomy isn't a cure for endometriosis 😔. There is nothing to cure endo. I have it on my bowels and bladder and at the top of my stomach. Im sorry to say this but I think your consultant is talking rubbish about it being phantom organ syndrome. After my hysterectomy my specialist told me that he removed as much of the endo around the bowels and bladder but i will probably still suffer with pain and other symptoms as endo spreads. The only difference the hysterectomy made to me is i obviously don't bleed anymore but sometimes I still get really bad stomach cramps and when I told my specialist he just said I'm afraid it's still going to cause you problems. You know how much pain you are in and I think you should go see a gp asap and tell them that you are struggling with the pain. I hope you get some relief soon. 💛

[Peenie123 in reply to angiecxx]

Same situation here- I naively though hysterectomy would end my nightmare periods / and it did but leaves you in pain and other issues remain, plus menopause of course.....I wish all those in the medical profession had greater knowledge x

[bighug]

Hi, sorry to hear you’re struggling again, unfortunately like the other messages, I too, had a total hysterectomy in 2018, kept my ovaries, then in 2019 I had to have an oophorectomy because the endo was back. It’s such a horrible disease 😢 The only advice I have is see try to see another consultant who might understand more, or go to your gp, I’ve got a great GP but all she can offer me is painkillers, it helps a little but I still struggle daily. She has also referred me back to my surgeon, so I’m waiting for that, but with Covid everything is going at a much slower pace. I wish I had better news for you, I hope you get some help and relief, you are definitely not alone with this, and its not just in your head, it’s your body and you know it better than anyone else! Big hug 🤗