Bowel Issues, Do I Ask for Another Referral?

[Kricam78]

Hi all,

I have endo which as well as the pelvic pain has also caused bowel issues, namely diarrhoea/constipation, abdominal pain, bloating, painful gas and previously I've experienced bleeding from my backend when on a period.

I've had a laporoscopy in Dec 2021 to deal with endo cells and a laporotomy in August this year to remove an ovary/ tube which was attached to my bowel and pelvis and to separate bowel adhesions.

While on the operating table my gynae surgeon saw that part of my sigmoid colon had a thickened outer wall and the bowel had also folded in on itself causing a narrowing. He had a bowel surgeon attend who was concerned enough to refer me into his own clinic.

The bowel consultant said he believed the issues are endo related only as I'm not losing weight and I don't bleed from my rear end except when on my period, but he referred me for a sigmoidoscopy to rule out anything else (I assumed he meant cancer).

Unfortunately the sigmoidoscopy had to be abandoned as despite 15 minutes of trying with 2 endoscopists they couldn't get the camera past the narrowing to see the area of thickening and I ended up crying in pain.

I expected for the bowel surgeon to then suggest I go for further imaging (CT?) or investigation (FIT test?), but he has decided that this isn't necessary and screened me out of his clinic despite not actually having any answers .

Do I make contact with his secretary and push for further, or do go back to my GP for a referral to another bowel specialist or am I making a fuss? Had anyone got experience of similar?

Thanks in advance

[Avourneen]

You need an MRI rather than a sigmoidoscopy. It will show in detail any endo in/on thebowel a sigmoid oscopy usually misses it because the endo grows on the outside of the bowel and squashes it inward, so a sigmoid oscopy can be claer and you can have terribel endo on the bowel. A FIT test is to test for blood in your poo I think it's usually used to screen for bleeding in the bowel for worse conditions. Get an MRI done by a specialist sonographer and do the FIT test and that should rule out anything and show exactly where the boewl endo is. Good luck.

[Kricam78 in reply to Avourneen]

Hi Avourneen,

Thanks for your reply. I'm actually more concerned that they were unable to rule out the cancer, which I believe is what the bowel surgeon was looking to do with the sigmoidoscopy. It's almost like he's given up at the first hurdle rather than refer me for other techniques to actually get any answer. But I can see that an MRI would be useful, because it would also determine whether any endo I have on the bowel is infiltrating also. I believe at some point it must have been due to the bleeding from my rear end but not necessarily now as it has been a few months since I've experienced that symptom thankfully.

[Avourneen in reply to Kricam78]

I can imagine, you must be really worried. It's definitely better to get checked out. I think GPS have to refer you to a specialist within 2 weeks if there is a suspicion of cancer. Maybe you should look for a different bowel specialist but I think the FIT test is a really good idea. I had a sigmoidoscopy about 6 years ago and they saw no endo but on the MRI it was everywhere, but the sigmoidoscopy was ultra painful, maybe because of the endo. I guess if there was any kind of mass in the bowel it would shoe up on an MRI and apparently the FIT test can just be to check for polyps so it could be that rather than anything dreadful. I hope you get the help you need, sadly you have to make a big fuss and push really hard too get anything doen with some doctors, but you can always see someone else for a second opinion. Good luck. xxx

[Kricam78 in reply to Avourneen]

Yeah I understand some people bear the sigmoidoscopy or colonoscopy well but I've had both and each was really painful. I'm going to make an appointment with my GP and ask to be referred to another bowel consultant and see where I get at least need to know if we can rule cancer out!

[Chel91]

Definitely ask for a MRI and an *immediate* referral back for endo / bowel surgery. If they want to repeat that test with you asleep I would say that would also be reasonable! Ask for that or demand answers? Hope you can get something sorted asap as it's very serious x

[Kricam78 in reply to Chel91]

Thank you Chel91 I will do my best to get answers as it does feel like I've just been fobbed off.

[Kricam78]

Just as an update I spoke to my practice nurse who had me do a FIT test and a stool test for inflammation. Thankfully the FIT test was normal so this would indicate no cancer, but my inflammation test was positive. As I'm continuing to get bowel symptoms (currently enjoying a period of diarrhoea and increased pain in my left side where sigmoid is) she has referred me to Gastro. I'll be looking to push for an MRI to determine the extent of the bowel wall thickening, to assess the state of the fold and narrowing and also potentially check for infiltrating endo. I'm determined to get answers now as this is affecting my ability to work and am having to consider moving roles. Also I've been advised that any more sick leave will have me on half pay, which we really can't afford.