Endo and bowels

I was hoping that someone maybe able to let me have some info/help/suggestions- I have recently obtained my medical records as I'm still in pain on left side as always, can not have sex(sorry for tmi), walking hard, hip groin pain, gas pains. I didn't realise until reading the records that this has been the case for over 26 years !! It only really manifested itself in 2014, and I had a lap, no endo found, but X-ray and ct found over distended bladder and bowel loops prominent, bowel gas in sigmoid again. Put me on decapetyl and it was wonderful, pai free for 6 months, then total hysterectomy bso in February 2015. Still had probs in bowel, so had sigmoidoscopy and colonoscopy which were clear, but uncomfortable in places.

im waiting for a transvaginal scan next week but I'm always told all clear. consultant has said its my back, not endo as not found! and he says I won't have it now as I have no ovaries. My sigmoid colon is so painful. I had my cervix removed last year to see if that helped, but it's now building again. It's always worse at the beginning of the month when my old cycle used to be which I think is a little strange.

My mum, was stage 4, her sister and both my daughters have it And he says it isnt hereditary.

i don't know what to do next as I know he does not want to help me and wants me to go on pain management but I want to know what for.

Do do they prescribe decapetyl for anything else other than

endo?

Im feeling so confused and just don't know what to do, give up or try to find someone else? Am I loosing it I don't know, all I know is it's not right in that area x

4 Replies

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  • Can you find a different surgeon for a second opinion.? Are you in a BSGE centre?

    Decapeptyl is also prescribed for ovarian or prostate cancer I believe if it's used the same as zoladex.

    It is possible though not common to get Endo after ovary removal either from hrt or in the case of some rarer more agressive Endo types which can self generate its own estrogen. This research is often dismissed by surgeons. I believe only around 10% of Endo is like this.

    Pretty sure the genetic factors in Endo are accepted and family members having it is acknowledged as a higher risk factor, though it isn't always hereditary. I have no family history.

    There are other non endo factors that can cause pain like nerve damage or adhesions though so it is also possible they rather than Endo are the cause of the pain you experience, which seems to be what your surgeon thinks.

    centerforendo.com/is-my-end...

    ncbi.nlm.nih.gov/pubmed/109...

  • Hi thank u for reply ... I'm at a BSGE center for scan.

    They have cleared me of adhesions and I've had the MRI nerve imaging done and all clear.

    The pain is the same prob I've had for over 20 years in the same place all the time, but just getting worse progressively unfortunately.

    Bowels are getting worse all the time and I really take care of myself which is a bit upsetting.

    I'm hoping that one day someone will be able to say we know what it is 🙏

  • Well if you've been cleared of both those and symptoms are actually progressing then I would definitely raise your concerns or push for a second opinion. Have you had a sigmoidoscopy?

  • Yes a sigmoidoscopy last year, clear but hurt when he got to the area that hurts but nothing visible. Colonoscopy this year and clear but I woke up briefly when they got to the same area but nothing visible. It's like something is on the outside of this area that is very tender. It's marvellous that I'm negative for bad things. The lady who did my colonoscopy noted that I was woken from the sedation and said she would let the consultant know. He just said no need for surgery. I think the current state of the NHS does not help sometimes as what I've got is not a killer and I perfectly understand that. I will gladly do pain management but only if I know what I'm popping strong pain killers for.

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