Bowel Endo Treatment

[spiritbox]

hi everyone!

I found out earlier this year from a laparoscopy and further mri that my endo is in my bowel, as my surgeon felt and then imaged a nodule on my bowel. I’ve been referred to an endo specialist by my gynaecologist for further treatment/investigations, but i’m not too sure what to expect!

for some background, i had been having issues with my bowels (cramping, pain, diahorrea and bleeding) for a few years, to the point where I had been out on the 2ww for cancer investigations it had gotten so extreme! I was relieved to find out that endo was the cause, however i knew very little about endo in the bowel (and i still do!)

has anyone had a similar experience? i really want to get this dealt with as it’s taking a lot out of me - im struggling at my job, in my day to day life, and i really feel like the pain with almost every bowel movement is taking the energy out of me. did people have surgery recommended, or hormonal treatments? really keen to hear everyone’s stories!

[madtabby]

i have infiltrated bowel endo and when operated on they could only get some off the surface of the bowel because it would have caused further damage to the bowel.

I think you have 2 options, loose part of the bowel which is major surgery which they may recommend because they may want to remove the nodule OR make the endo inactive using hormone therapy. As a last ditch attempt they fitted the mirena coil . This worked and for the first time in 20 years i got my life back as the endo controlled my life . I was like you symptoms wise and on my period i was in agony and pretty much slept in the toilet as i had no bowel control

Hope that helps

[spiritbox in reply to madtabby]

thank you so much for sharing! i got the mirena coil fitting during my lap and it has to be said it has made life SO much better in terms of my pelvic pain, but it doesn’t seem to have shifted anything when it comes to the bowel! appreciate the words and guidance 😁

[madtabby in reply to spiritbox]

How long has the mirena coil been fitted hun ?

[ShropshireLassInPain]

Hi! I’m a similar boat. Noticed blood in my stool last year, did a stool test, came back ‘normal’ so GP didn’t want to know after that.

I was diagnosed with stage 4 Endo earlier this year with confirmation it had affected my bowels.

My consultant is going down the surgery route and I had an MRI last week for them to try and see the extent of the damage in order to plan their approach.

It’s affecting my daily life enormously as I daren’t stray too far from a toilet as I have little control, and the pain before, during and after is horrendous.

[spiritbox in reply to ShropshireLassInPain]

i’m in the exact same boat! even something as small as passing wind is horrendous - really knocks the wind out of me! hoping you can benefit from the surgery, keep us all posted, you’ve got this!

[Fizzypoptastic]

I had the same symptoms as you. I used to scream in pain whilst voiding & was left exhausted afterwards.

I have stage 4 endo in pouch of douglas, pelvic walls etc. I had never had any hormone treatment before & opted for the Mirena , nearly 3 years ago (as surgery seemed scary). The Mirena took 4 months to settle but it was a Godsend for me. It stopped the bleeding, pain & multiple visits to the loo.

I had surgery over a year ago & was glad I did. I still have some endo left which would have required a multi disciplinary team present & possibly a stoma.

[spiritbox in reply to Fizzypoptastic]

yes the exhaustion after is just overwhelming!! i’m so glad to hear about your experience with the mirena - mine cleared up my “period” pain so much, but sadly just not the bowel! thank you for sharing - fingers crossed everything goes as planned for you in the future!

[Orangutan24]

I have bowel endo and having surgery scheduled in 10 days. Massively affects day to day life and have many symptoms - not sure if linked to bowel endo, panic attacks (mental health suffering more than physical) or something else. Have chest flutters and general feeling of being unwell every time I need to go to the loo, terrible heartburn / reflux and stomach cramps which wake me in the night. Very scary so just hoping the surgery resolves everything

[Kazh1209 in reply to Orangutan24]

hope the surgery goes/went ok lovely x

[Orangutan24]

Thank you. Had surgery yesterday & so far so good x

[BrightSkyPurple]

I’ve only just joined this forum so this is probably a really late reply but I’m in a similar situation. I was put on the colorectal 2WW cancer pathway with a raised FIT with colonoscopy clear. The had another higher raised FIT a year a bit later and virtual colonoscopy clear. During this time my colorectal consultant ordered an MRI which they said was dermoid cyst was fast tracked to gynae cancer unit. They then decided it was benign dermoid. I had an ovarian torsion a week ago and during the emergency surgery the surgeon found an ‘incidental finding of endometriosis nodule on the left cornua of the uterus’ - no one has ever said to me I could have endometriosis and my bowel symptoms are so severe - still extremely painful with blood that I’ve been referred back to colorectal this year (appointment in a few weeks time). I’m not wondering if this is endometriosis afterall and now a nodule has been found. I have no idea but I’ve been told to be referred to the endometriosis clinic from my GP. I hope you are doing ok as can be now?