Can endo come back after total hysterectomy - Endometriosis UK

Endometriosis UK

51,504 members42,275 posts

Can endo come back after total hysterectomy

disneyanna
disneyanna

I have had everything removed ovaries the lot. I had stage 4 endo. Is there any chance this can come back? I have a scan next week I’m scared

22 Replies
oldestnewest

I was only diagnosed for the first time at age 51 seven years after TAH and BSO so unfortunately yes. I assume you had the hysterectomy at a specialist endo centre and had all the stage 4 excised at the same time?

disneyanna
disneyanna in reply to Lindle

I had my op in feb. Yes took it all away as it was everywhere so had ovaries removed and womb. I hope it hasn’t come back so soon

Hi i hope you are well. I'm afraid a hysterectomy doesn't cure endometriosis 😢. I had a full hysterectomy 3 years ago and I still suffer on the daily with pain. It spreads and I now have it on my bladder and bowel and possibly on my spine. I didn't think a scan could pick up endo. Please let me know how you get on with your scan. Take care and stay safe 💛x

disneyanna
disneyanna in reply to angiecxx

I had some on my bowel as well. I had nearly all on my large bowel remove and my rectum removed. Thank you I am so worried x

angiecxx
angiecxx in reply to disneyanna

I'm so sorry if i have made you more worried 😞. I was told for many years that a hysterectomy would cure endometriosis and it wasn't until i was taken back up to the ward after my operation that a nurse told me that it doesn't. I was hoping to be pain free....x

disneyanna
disneyanna in reply to angiecxx

I’m hoping that it hasn’t in such a short space of time as well x

Lindle
Lindle in reply to disneyanna

Sometimes it is necessary to remove the uterus and ovaries at the same time as excision and it is complex surgery. Were you discharged from the endo centre at 6 months? If you are having problems I would contact the centre's specialist endo nurse.

disneyanna
disneyanna in reply to Lindle

I had my operation at a hospital not an endo centre. Yes all of it was removed

Lindle
Lindle in reply to disneyanna

I did wonder. Are you in the UK? If so it is a legal requirement to be treated in a tertiary endo centre with stage 4.

disneyanna
disneyanna in reply to Lindle

Yes I am in the uk. I have two surgeries at the same time so total hysterectomy and then bowel sugary took 5 hours

Lindle
Lindle in reply to disneyanna

The endo centres are in hospitals so maybe it was one? Was it on this list:

bsge.org.uk/centre/

I have my scan in a few days I am so scared. I really hope it hasn’t

If it has come back I just think I will leave it I can’t have more ops

I had a total hysterectomy in February this year, they should have operated on my bowel but didn't, I'm in so much pain ATM with bowel pain, it's also giving me chest pain, it feels like I'm having a heart attack, anyone else have this xx

disneyanna
disneyanna in reply to Clackson

That sounds really painful. What stage did you have.

Not sure, definitely had adnomomis ( sorry can't spell it 😂) I don't have the amount of pain I had before , but this last week is hell, they did not operate ( even though they said they were, the bowel surgeon was present) as they said they managed to to do it without him ( bowel was stuck) xx

disneyanna
disneyanna in reply to Clackson

Yeah my bowel and bladder were stuck together

Clackson
Clackson in reply to disneyanna

Do you have any trouble now, and what have you had done x

Clackson
Clackson in reply to Clackson

Sorry I know what you had done , do you have problems now with your bowel, I look pregnant with the bloating x

disneyanna
disneyanna in reply to Clackson

So I had all of my rectum removed, nearly all of my large bowel so my sigmoid colon, had a total hysterectomy including ovary removal. I had a stoma for 6 months then had a reversal in august

Clackson
Clackson in reply to disneyanna

Ooh that sounds bad, how are you know xx

My scan is tomorrow I’m worried

You may also like...