Endo and stomach

[Caranne]

Hi just wondered if anyone struggle with their stomach and bowel because of endo? Struggling with feeling unwell when I eat and pains around belly button and very bloated and uncomfortable. I know the gp will likely say it’s IBS but just wondering if I’d need a colonoscopy to see what’s going on. I have stage 4 endo so know that can cause loads of issues but I still worry if anything else is going on x

[stephersb]

I've got Endo and IBS. They never found Endo on my bowel but I'm being investigated for pelvic floor issues. I'm about to make a post about it actually. I feel like the doctors don't believe the extent of my bowel issues and they just think it's IBS not too bad when it's agony. I wouldn't say I have a low pain threshold either. Definitely worth pushing for am Colonoscopy - especially if you've got stage 4. X

[Caranne in reply to stephersb]

Thanks yep going to look into colonoscopy but wasn’t sure whether colonoscopy can look at your stomach as well or might need something else. Yep it’s so frustrating! I hate going to the gp, feel like they’ve let me down so many times over years and you just get oh it’ll be Ibs which isn’t helpful when you’re in pain and struggling to function every day!x

[Cailleach in reply to Caranne]

You need an endoscopy to look at your stomach. They go in from the other end to a colonoscopy!

The colonoscopy only goes around your colon which is the lower end of the digestive system. They use a tiny camera and if they see anything like polyps etc they take a little sample for analysis.

The endoscopy is a tube with a camera going down your throat checking out your oesophagus and stomach, they may also take samples for testing.

Do tell your doctor about all your symptoms and try to pinpoint where the pain is, so they can work out what is going on. You may have to keep pushing.

Bowel related pain and bloating seems pretty common with severe endo. I have a lot of bowel pain myself. Buscopan which is a med for IBS can be very helpful if you have cramps even if it’s not actually IBS.

If you have discomfort when eating or soon after that seems more likely to be stomach related though. Don’t rule out the possibility you could have something else besides endo.

Anti inflammatory pain killers can long term affect your stomach causing ulceration even if you are on omeprazole or something similar.

Hope you are able to get some answers.

[Hela22 in reply to stephersb]

Hi Stephersb, im going through something very similar. Did they find out if it was your pelvic floor giving you the bowel issues? Or have you been refered to a colerectal specialist? X

[littlemisstaxi]

I feel your pain. For two years I've been complaining to the gp with bowel issues. And now I get a lot of nausea and stomach pain. Especially when it's my totm. All of which im being told is IBS. I'm on the waiting list for a hysterectomy and hoping my bowel and stomach issues resolve with that.

[Caranne in reply to littlemisstaxi]

Hey thanks for replying. It’s so hard isn’t it, feel so down at the moment. It has been on my period when it’s been bad this time but I’m never usually so bad so seem to have had an endo flare but no idea why. Sorry you’re struggling as well, hope you don’t have to wait long for your op x

[Bethleah]

Hi. I am bloated 24 7 and get stomach pains especially if I eat something it’s not happy about. I have biweekly issues as ovary and uterus stuck to bowel. I’ve also been worse indegestion and heartburn since started hrt in feb which I’ll raise at my review in August. Things are worse at ovulation and period. But push for further investigation. We all have to push for help and to be believed.

[Caranne in reply to Bethleah]

Sorry you’re struggling as well. Yep I wasn’t sure if I’d eaten something this time to set me off so badly, no idea what though. My ovary was stuck to my bowel but not anymore unless it’s stuck back again. Yep need to push, just so exhausted with it all. Have you found it okay getting HRT? I keep hearing there’s shortages everywhere x

[Bethleah]

I couldn’t get the gel so have the patches instead but I want to see about other options as some side effects. I’ve also been spotting for 2 weeks with full blown period symptoms after 13 months of no periods. 🤬

[Caranne in reply to Bethleah]

Oh no that’s really rubbish, hope you can swap soon and it gets better x

[Avourneen in reply to Bethleah]

HRT not always safe or a good idea if you have endo. Anything with eostrogen makes it grow.

[Bethleah in reply to Avourneen]

I’m aware. I was referred to menopause clinic by bgse and and menopause were thorough in explaining options and risks especially with the endo. They are liasing with the bgse and pain clinics.

[Leenie0811]

I have stomach issues relating to my endo, when I had my last surgery in 2017 they said it was stuck to the bowel but hadn’t perforated. Waiting on surgery now but having a colonoscopy due to a constant battle with the GP, been having blood clots come out and all kinds of things. I hope you manage to get everything sorted, I’m not sure if they can look at your stomach from a colonoscopy but mine is Tuesday so I’ll be able to tell you more then x

[Caranne in reply to Leenie0811]

Oh thank you, that would be really helpful. Hope it goes well on Tuesday x

[Avourneen]

I have stage four endo and particularly loads of issues with it in bowel but I had a lot of pain high up in mmy stomach under the ribs. I had a gastroscopy and they found I had a hiatus hernia and a scan showed gallstones too.

A colonoscopy will not show endo because it only looks inside the bowel, the endo ison the outside of the bowel squashing it so an MRI is much more likely to see it I had a colonoscopy and it didn't show any endo even though I have everything stuck together.

An MRI or a transvaginal ultra sound done by a really good sonographer will show endo much better. Gastroscopy is worth having if you have pain high up, I didn't know this before but producing too much estrogen can cause gallstones. It's not a nice experience but for endo MRI best bet.

Don't accept IBS as diagnosis without any clinical proof it's just a diagnosis to fob you off and one of the main reasons women get diagnosed so late. It's really common for endo to grow all over the bowel and cause problems.

[Caranne in reply to Avourneen]

Ah thanks for your reply that’s really helpful. I did hear that MRI/ CT scan is helpful to show if part of bowel has narrowed due to endo or scar tissue from previous surgeries so might be better for me to start with. Last time I mentioned colonoscopy they didn’t refer as I’m not at risk of bowel cancer and just did bloods. Yep I had IBS all the time before they finally diagnosed stage 4 endo and found an enormous cyst 🙄x