How is bowel endo/ deep infiltrating endo diagnosed?

[Endo101]

I am in my mid-20s and have had bowel issues on and off for the last few years. In the last few months, they have got worse. I regularly get loose foul-smelling sticky stool (probably about once a week), lots of gas bubbles in stool, occasional abdominal pain and I’ve had rectal bleeding 5 times in the last few months even though I have never suffered this before. I have had 2 PR examinations and there are no signs of hemmorhoids or fissures and I had blood tests this week which were normal so it looks like I don’t have IBD (am still waiting for one more result though). I have endometriosis and when I was diagnosed four years ago, the surgeon told me my bowel “looked very inflamed and would’ve been causing me a lot of problems”. I’ve asked GPs if these symptoms could be related and they dismiss it but from my experience they have very little knowledge of endo and I have consistently been given incorrect information by them. I was wondering how can bowel endo be diagnosed?

[plotments]

Only by having a diagnostic laparoscopy can it be fully confirmed but doctors normally send you to gastroenterology first to rule out other conditions. Most people with bowel endo normally get misdiagnosed with IBS but if your symptoms are worse mid cycle or on period I would mention this to docs.......as you said they have very little information of this condition

I think we know and understand it more we're the ones living with it.

Good luck

[Princesspeach84]

I would request an MRI to look for bowel endo. In my opinion Transvaginal scans are useless and painful. I have rectovaginal endo and have loads of bowel trouble, some days worse than others. If after your MRI you want a lap I suggest researching an endo specialist doctor to perform the op and as you are having bowel problems a bowel surgeon should be present also. Good luck xx

[Endo101 in reply to Princesspeach84]

Unfortunately I did at the time because in the year leading up to my diagnosis I had a lot of bowel issues. After the surgery which confirmed I had endo and adhesions all over my bowel, I asked if I could have an MRI to check for any deep infiltrating endo (I have suspected for years that I have endo in my ileum which I know is very rare but my period pain is very localised to the lower right and feels like how I imagine an appendicitis). Anyway they said it would be gastro’s responsibility to do an MRI and when I was referred to gastro, they said it was gynae’s responsibility so I got nowhere.

[Princesspeach84 in reply to Endo101]

That’s rubbish! Are under a gynaecologist then and not an endo specialist? I had to pay private to get heard 🙄 my endo came out of my perineum so I didn’t need an initial lap to get diagnosed. I had that removed and biopsied was diagnosed with endo and my Gp wouldn’t refer me to specialist 😑 so I paid £150 to see specialist and was fast tracked for op on NHS. Can’t you ask your GP for MRI? Ridiculous how you are fobbed off xx

[Ano2020]

Hi

Just had a surgery three weeks ago stage four was spread to bladder and bowel everything was stuck together. I have never experienced pain no symptoms at all. Only six months ago I started seeing brown discharge between my periods.

And that’s when i started seeing specialists ... internal ultrasound showed endo on bowel so my doctor referred me to an endo specilaist who did the laparoscopy and cleaned everything and got rid of my tubes.. I’m seeing my doctor in two weeks he’s starting me on zoladex . So stressed and worried about everything zoladex and what will happen after...

Don’t leave yourself go to a specialist xx

[Moon_maiden]

Mine was diagnosed at lap, it was all around pouch if Douglasand on outside of bowel, he could feel it on the inside as well. It showed on MRI as well.

You need a referral to the BSGE centre to get the right diagnosis and treatment.

Hope you get it sorted soon

[Hidden]

Hi, i had a mri scan with the contrast dye in February and the Colorectal consultant rang me a few weeks ago to say there were dark patches in my sigmoid colon and rectum. He said it was more than likely endo and now I'm waiting for my telephone appointment with gyny to see what they will do. It took me 12 months to have the mri, after several gp appointments told me i had ibs. I went to a general surgeon who arrange a colonoscopy that was normal, he then dismissed my concerns and discharged me. It was my gyny consultant that recommend i see my current Colorectal surgeon as he has an interest in bowel endo. He has literally been my life saver, he arranged loads of tests and said to me 'im conscious youve suffered unnecessarily'

My symptoms were cyclical, i had severe bleeding from bowel movements, severe abdominal pain to the point of passing out with bowel movements. I even stopped eating alot around my cycle to stop the chances of a bowel movement.

I would say, you know your own body and know if something isnt right. Keep fighting, I've shed so many tears from not being listened to or believed by medical professionals. I would ask to go see an endo specialist.