What are your symptoms/experiences with bowel endo?

[Peachii]

hi there all,

Wondering if you could help. Ive been diagnosed with endo for 4 years now, and had two laps (one laser one excision) which both showed endo/lesions on my ovaries, and uterus but the largest patches were on my pouch of duglas.

Over the years, ive been told by doctors that I just have IBS or that I have ibs like symptoms caused by my endo. However, back in june I had a sudden severe flare of "IBS" and it wouldn't go away and hasn't stopped since (nearly 3months on) so my doctor did samples, and found that there was raised inflammation markers, which they said wasn't typical with IBS, and after looking at my symptoms thought I may have IBD instead so referred me to the hospital.

Couple days ago I had a flexible sigmoidoscopy performed, but the doctors said they couldn't see anything abnormal and that the area they checked looked healthy and to go back to my GP. But it was so fast (less than 5-10 mins). As i have endo i wondered if it could be in my bowels, but if there were small/tiny bits of endo, I fear the doctor might've missed it? As I watched the camera video on the screen, and it was going very fast.

However im not sure, as my symptoms of chronic diarrhoea/ occasional constipation that doesn't ease with dietary changes, occasionally nauseous/sick, sudden urgency to go to toilet and high frequency of when I need to go to the toilet is constant over the past few months, i haven't noticed much difference in my symptoms when I am or aren't on my period. So im starting to think im a bit mad and unsure whats happening to me as when looking at common symptoms of bowel endo it said it gets worse before/during period.

Ive tried a few meds but currently havent found one that helps stop the urgency/frequency of bowel movements, but talking to my doctor again later so hopefully they can suggest something else.

Just wanted to know if anyone has experience similar with bowel endo (or anything else that you might think is worth looking into)

Thanks in advance!

[Pinkybow]

hey! I would definitely look into it, especially as you have has DIE before. I have endo on my bowls and I have frequent bursts on urgent toilet needs, I have 5 mins to fond a toilet or else. I have to pass wind if ive got wind, the pain is too much. It takes me forever to go to the toilet even though it's generally loose stalls and if its a solid one its long and thin. Tmi but I hope that helps 😊

[Peachii in reply to Pinkybow]

hi there, thank you for sharing, and no worries at this point any bowel habits doesn't phase me after all this I feel nearly immune 😂

Same, sometimes its even less than five minutes, I could be going about my day doing work/talking/anything, and then suddenly I need to go to the toilet and i need to be on it within the next minute or so, and then sometimes when I reach the toilet i dont even have a bowel movement, its horrible!

[RubyErin]

I have have stage 4 endo and left sided pain. I have very similar bowel symptoms too. Needing to go regularly, sometimes not able to go, even when I feel like I need to. Stools are generally loose so sometimes it doesn’t make Sense to me when I can’t go? I have painful wind. I’m so so careful with my diet, but it doesn’t seem to make a huge amount of difference. It’s definitely worse the 2 weeks around my period, however I often have some symptoms coming and going throughout the month. I’m very grateful to work from home!

[Peachii in reply to RubyErin]

thank you for your comment and sharing your experience. I work from home too and my employers are really good with my medical issues/sickness so its so helpful when I cant stop going to the loo 😂

This is the thing im struggling with, no matter how careful I am, and how much food ive cut out that can cause inflammation/ common diarrhoea trigger foods, it doesnt help. Trying to figure out whats causing this is so hard 🤔

[Aussie79]

Hi Peachii, I'm sorry to hear you're suffering with such awful symptoms. I can completely sympathise with you because I have been experiencing gastrointestinal symptoms such as chronic diarrhoea, occasional constipation and nausea, especially 14 days before my period. I had to provide stool sample which came back showing that I had inflammation in the bowel. My GP sent me for a colonoscopy and everything looked normal. The biopsies taken were also normal. My gynae's senior registrar told me that hormones can be responsible for gastrointestinal symptoms, especially prostaglandins. Before I had the colonoscopy, I was panicking that there was something serious going on with my bowels because there are days when I feel really unwell with it, so I posted a question on this forum and people have shared that they also experience bad gastro symptoms with endo xx

[Ecclesiastical]

Hi Peachii, I’m so sorry to hear that you’ve been struggling so much, I definitely think it’s worth pursuing. After 4 years with bowel symptoms and being told I have general anxiety disorder and IBS I went to see an endometriosis specialist privately. I had an MRI and they found deep infiltrating endometriosis on my pouch of Douglas, and colon. I can’t go to the toilet without suppositories but when I go it’s loose. I always feel bloated and this dense feeling in my rectum that ‘I need to go’ I have scars over my buttocks because heat is the only thing that seems to ease the sensation. I’m angry as it was missed on a diagnostic lap 2 years ago and I was told I had ‘mild endometriosis’ at the time but it was done by a gynaecologist and not a specialist. It’s exhausting but I’ve begun to realise that you have to heavily advocate for your own health. X

[Kinder_Cat]

Hello thougt I would reply as this sounds identical to my situation. For 4 years been diagnosed with an IBD but also endo. Had inflammation markers so high they have just started using the > than symbol next to it but no meds controlled or helped it. They have finally decided the endo is linked and 2 laps already and am currently recovering from a bowel resection.

During diagnosis from gastro team lots of bowel related tests and none spotted the endo. Finally saw amazing specialist at hospital and this Dr who performed another colonoscopy and found a massive part of my colon area was being affected by endo. He explained that most gastro Drs don't pick it up as you will not see the endo (until it is really advanced and crushed or perforated bowel), but what you can see that is often missed is the slight distortion of shape (also got to see some of the oddest pics of my self to have this explained which oddly helped). Ended up losing a chunk of bowel that he says was destroyed by it but not a single one of my normal gastro Drs at my local hospital spotted any changes.

Sorry this is a ramble but my point is please keep preserving and don't just accept IBD/IBS if you dont think it is that. I did for ages and regret it. Not sure if this helped at all but good luck and hope you get anwers x

[Chezzerl in reply to Kinder_Cat]

this is just like reading my own story ! Also finally had excision in 2018 which included bowel resection after years of being passed off as just IBS. Slightly concerned I may still have an issue as gastro symptoms creeping back in but again I have been passed off being told too rare to have it twice but I’m not convinced so guess will just have to keep fighting for answers Peachii keep fighting for answers you deserve to be listened to xx