Can endo come back after total hysterectomy

[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

[Lindle]

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 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

[angiecxx]

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 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 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 in reply to angiecxx]

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

[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 in reply to Lindle]

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

[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 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 in reply to disneyanna]

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

bsge.org.uk/centre/

[Bluesea7 in reply to angiecxx]

I was told endometriosis goes when in menopause after full hysterectomy and ovaries removed ect .

[TennisAM in reply to Bluesea7]

Whoever told you this is misinformed. Endo can create its own estrogen and small amounts can cause problems. Many women have pain long after a hysterectomy/menopause sadly

[Bluesea7 in reply to TennisAM]

The doctors told me, they should have told me the truth. That's not good.

[TennisAM in reply to Bluesea7]

Doctors aren't always right sadly. Many don't understand endometriosis properly.

[Bluesea7 in reply to TennisAM]

Thank you for letting me know, I'm ok at the moment.

[angiecxx in reply to Bluesea7]

I'm afraid not my lovely. Some women may feel better after having a hysterectomy but it's certainly not a cure for endometriosis. I think there's alot of misinformation about endometriosis which needs to be sorted out asap. 😞💛.

[TennisAM in reply to angiecxx]

Exactly

[Bluesea7 in reply to angiecxx]

Hopefully they will do more research into endometriosis, us women have to go through alot in life.

[Bluesea7 in reply to angiecxx]

Thank you for letting me know I'm ok at the moment.

[disneyanna]

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

[disneyanna]

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

[Clackson]

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 in reply to Clackson]

That sounds really painful. What stage did you have.

[Clackson]

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 in reply to Clackson]

Yeah my bowel and bladder were stuck together

[Clackson in reply to disneyanna]

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

[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 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 in reply to disneyanna]

Ooh that sounds bad, how are you know xx

[disneyanna]

My scan is tomorrow I’m worried

[Bluesea7]

I was told after full hysterectomy and ovaries removed ect, in menopause the endometriosis goes, but I've just found out that It can return years later .