I have stage 4 Endometriosis AMA

[Endowhenwillitendoh]

Diagnosed after over a decade, full hysterectomy and ovaries removed at 31 years old

ask away

What does stage 4 mean?

how does it affect your life?

does it affect you as much now as before the surgery? If so, why and how?

Are you pain free, in that area now?

Lurking. I also have stage 4 deep infiltrating and adenomyosis

Did you have many surgeries prior to the hysterectomy?

How long ago was your hysterectomy? What would you say are the pros and cons?

Hi just popping in I’m working today but will answer fully later!

i had a horrible time pushing for diagnosis and treatment and to be honest its absolutely shite because Endo (I have Adenymyosis too) is just a case of ‘what’s the least worse option’

theres no cure sadly

l will be back later to answer q’s and help where I can! I’ve been through the wringer with it and if I can help even one other woman then I’ll try my best. X

Did you receive treatment on the NHS, or privately?

I have stage 4 endo but it’s in my bowel and bladder.

Solidarity x

Have you had any treatment for it and did it help?

Hi All, just fallen on this thread - I've got endo cancer and the plan was full hysterectomy, however they've found significant endometriosis so there's now discussions about whether or not a hysterectomy is viable due to my organs being struck together - just asking whether anyone has had a successful hysterectomy with such significant endo?

I haven't had a hysterectomy but I did have severe endometriosis which had tethered a lot of my organs together, to the point it affected my mobility. I had surgery with Mr Afifi in Birmingham and he was able to separate everything and preserve my uterus and ovaries. I highly recommend him if you're close enough.

I'm so sorry about your diagnosis and I hope you have successful treatment.

@ButWhere thank you for your response and I hope you recovered well