Worried: I had a hysterectomy the end of... - Endometriosis UK

Endometriosis UK

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Worried

Bailey1981 profile image

I had a hysterectomy the end of July I had my uturus tubes and cervix removed I had andometriosis and endometriosis it was aslo all in my pelvis and rectum

My consultant said it won't come back now and only a chance of it coming back is 10% I've recoverd OK had two infections after surgery and been left with back pain

But since yesterday I've been having pain in my pelvis back and hips I thought it was my bowels so had something for that but the pain is still there

I am so scared that something is still there but it wouldnt come back that quickly would it

I am dew to go back to work tomorrow after having 3 months off

11 Replies

Were you operated on in a tertiary endo centre as that is where endo involving the bowel must be treated? You should have had a 3 month review with the consultant but Covid has likely delayed this but in any event you aren't discharged for 6 months in you are in England.

Bailey1981 profile image
Bailey1981 in reply to Lindle

I had it with a top endo specialist in an endometriosis clinc he reviewed me at six weeks then 12 weeks and as I was feeling fine he signed me off and said I could go back to work the pain only started this weekend

Lindle profile image
Lindle in reply to Bailey1981

If it is a BSG accredited centre in England you are still not discharged until 6 months when you are reviewed by the specialist endo centre. Unfortunately endo can persist if there is any left as you'll know and severe endo is very challenging surgery even when done by the advanced surgeons. Unfortunately the evidence does suggest that recurrence is considerably higher when the ovaries are kept. But it is also potentially likely to be adhesions. I would ask the endo nurse what she suggests.

I had also one end of april. Had pain also months after that. I would say you are still recovering and still a process but better be sure and get checked out

Best for you! 😘

Hi, can I just ask how were you diagnosed with endometriosis? I been having pains on and off on me lower left side, they sent me for a scan and it came back alright. They asked to monitor the pain and it seems to me it is cycle related. Starts few days before period than ends with period. However not every month I have it. They now sending me for colonoscopy. Not sure how related is this. How did your start if you dont mind me asking?

Amom4 profile image
Amom4 in reply to Nicole12345

Alot of times endometriosis doesn't show up on any type of scans and the best way to have it diagnosed it through a laparoscopy with an excision specialist.

I went private at the bmi private I had a mri scan you can't see it on an ultrasound scan I only questioned endometriosis because my mum had it and turned out we where right but also had andometriosis as well the doctors at the hospital did a biopsy and because that came back fine they discharged me and just wanted to put the coil in I was lucky enough to be able to go private and see someone from the endometriosis clinc in Birmingham

All the best for your appointment today. You could ask to voice record the appointment in case you forget anything and write down any questions you have to ask.

🙏🏻 x

Im not sure if it helps im having a colonoscopy to check that my bowel isnt damaged in anyway or inflamed but wont show endo ... its never ending x

Hi it could have been missed, I had a hysterectomy with ovaries left but right sided pain continued for a further 3 yrs until it was excised in Sept. It was 3yrs of fighting as was told all removed and it won’t return but I knew it was still there. We know our own bodies. X

We sure do! To the point you end up knowing more than the professionals 🤣I think mine was missed on my bowel it just doesn't feel any different from before surgery so dis heartening but only makes us stronger x

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