Possible endo

[Jacqueline88]

Hi everyone. I have a bad feeling I have endometriosis attached to my bowel. I've had bleeding from my back side that kept getting worse and the Colonoscopy showed nothing wrong and I was told I could live with it. But since I skipped yet another period I ended up in agony and bleeding with clots from my back side worse than ever. I put two and two together and realised I went to the wrong specialist. What I was wanting to ask was when I pass blood and clots some form of bloody tissuey looking clump fell out of me. I have had that happen before but I'm wondering if any of you in here get that? I also get boughts of nosebleeds with large clots that appear if I miss a period. It all sounds weird and I've mentioned this to my drs and they look at me as if I've gone strange but I have read others get the nose bleed thing. Sorry if I've gone on. I'm currently on route to try and get diagnosed. My periods have always been a strange one. They've gone missing for a couple of years then reappeared sometimes I skip a month, other times I come on and only bleed lightly for two to three days. Can anyone who has intestinal endometriosis tell me how they got diagnosed and what form of help they received? Looking for answers. Thanks everyone.

J xx

[ElizaEliza]

Hi Jacqueline88,

Sorry to hear about your symptoms.

I had really bad endo on my bowel about 5 years ago. I had a huge nodule on my lower bowel (apparently the worse place to get it) that had indented the shape of bowel. I had an MRI scan with contrast dye (they inject the dye into your veins, insert it vaginally and anally.) and it showed the huge nodule between my bowel and vagina (rectovaginal endo) and other growths of endo all over my womb.

I also had a colonoscopy, but this wasn't to diagnose endo but to see whether it had penetrated through my bowel wall. The nodule hadn't penetrated through but they could see the 'kink' in my bowel due to where the endo nodule was on the other side. A colonoscopy will only show endometriosis if it has penetrated through the bowel wall - it doesn't mean you don't have it if they don't see anything.

Due to the severity of the nodule, I had a big op to remove it. I was told that I would most definitely need a stoma and I was prepared for a colostomy bag. Despite being told I would have one, my surgeon managed to shave the endo off my bowel wall and I didn't end up having one. I know there is still a kink in bowel where the endo once was.

I didn't have any bleeding but going to the toilet was unbelievable painful. I suffered from diarrhoea and constipation (still do) and I would get very intense sharp shooting pains up my rectum. The pain was horrific on my period - I was actually diagnosed through emergency surgery for suspected appendicitis during my period after I collapsed in pain.

I would definitely push for an MRI scan with contract dye but I know they aren't 100% effective and don't always show endo. The only certain way to diagnose any form endo is via surgery.

Hope this helps.

xxx

[Chloes161290]

Hi Jacqueline 88,

Sorry to hear of your symptoms, sounds horrible.

Just reading your story, I also have endometriosis however it wasn't found in my bowel.

I however was diagnosed with coeliac disease at the same time..which causes frequent bleeding from the bowel.. and just wondered whether you have been tested for that also.

Hope you get some answers.

Chloe x