Is this endo belly?

[CitizenErased]

Hi everyone,

I'm still only at the 'endo suspected' stage as I've been on a waiting list for a specialist centre since August last year. But I've got a new symptom and wonder whether this sounds like endo belly to anyone.

I've always had a bit of bloating around my period, as most do. But I'm currently experiencing something way worse than usual. Last week, I was having lots of the usual symptoms before my period start (brain fog, sheer exhaustion, nausea, anxiety, etc.) so I had a couple beers. I know, I shouldn't have done because it makes the anxiety worse, but I just wanted a couple of hours break from my brain buzzing away. The following morning my stomach had blown up like a balloon and I had sharp pains all around my middle and behind my belly button. It eventually went away over the weekend when I was sensible and ate things with no gluten/very little gluten. I've never had a massive problem with gluten before, but I've been noticing a bit of a pattern over the last few months where eating a lot of bread makes me feel a bit bloated.

Then yesterday, I got a very painful period (as usual). All I wanted to eat was some healthy spinach pasta with a wholemeal wrap for dipping because I felt so nauseous. I ate two mouthfuls of pasta and a quarter of the wrap, and I was full. About an hour later, my stomach had ballooned up to the size of a football. Same as last week but worse, same sharp pain. I could hardly move to get myself to bed. I looked like I was six months pregnant! It's so painful and uncomfortable. I'm not going to be able to go to work today as I can't get my jeans on and the only loose bottoms I have are PJs!

So, does this sound like endo belly? Does anyone else get such an immediate reaction to certain foods only while on/near their period? Or is this more likely to be something else?

Thanks for taking the time to read 💜

[UpandUp]

I get this too! Sometimes there isn’t a rhyme or reason to what I eat it just happens randomly!

[CitizenErased in reply to UpandUp]

It seems to be random to me too! I didn't any gluten for the past two days and I've woken up super bloated and swollen again. Bizarre.

[Comedykid]

have you tested to see if you are intolerant to gluten? That might be an idea if you notice you already struggle with those foods.

I was like this before and looked 6 months pregnant and found out I had a yeast intolerance don’t get me wrong I still really bloat on my period and they are painful but now I have cut out yeast I’m not as bloated as I was before and my period isn’t more painful because my gut is feeling more healed - might be worth looking at an intolerance test just to rule andything else out

[16LELE in reply to Comedykid]

I second this. I'm waiting for my lap but in the meantime I'm having to do tests for coeliac/gluten intolerance to see if that's causing my "feel full quickly" and bloating

[CitizenErased in reply to Comedykid]

I haven't tested for gluten intolerance, no. I've never had a problem with it until very recently, but I've heard that you can just develop these things with endo. But you're probably right, I should get checked! It wouldn't hurt. Plus I'd hate to cut out bread if I don't need to, haha!

[Comedykid in reply to CitizenErased]

Yes! I think my lactose is due to endo as I was fine with it before and now I can’t tolerate it at all! My mum developed gluten intolerance out of nowhere (she doesn’t have endo) so it can happen

[Loriiim]

Hi, I get this too. Sometimes triggered by food, sometimes completely random! You could try some exclusion diets - as others have said gluten & lactose. This didn't fully help me & I got my GP to refer me to a dietitian & tried the low fodmap diet. It's pretty full on & definitely worth doing alongside support rather than on your own, & isn't something that you should be on long term - it's just about finding triggers. It helped me a bit - onions are a definite trigger for me, but still didn't fully help my symptoms. I'm now under colorectal after being referred by the endo team (I've got rectovaginal endo & my sigmoid colon is now fused to my uterus, cervix & vagina). He thinks I've very likely got SIBO & gut dispyosis. I can't get a test for SIBO on the NHS unfortunately, but is common in those with endo (there was a small study & it was something like 80%!) so I'm having to pay privately for that (£2-300), & will just be a course of antibiotics to treat. Gut dispyosis is a microbiome imbalance & I've yet to look into this. Otherwise he suggested peppermint capsules for bloating as they're more concentrated than peppermint tea, & probiotics. The dietitian told me these are all different & to try one for a month & then try another if it hasn't helped. Good luck. It's a horrible symptom with no one solution, so hope you find something that helps quickly 🤞 in the meantime, loose clothing & elasticated waists are super helpful.

[CitizenErased in reply to Loriiim]

Thanks so much for the advice! I'll definitely try to find some peppermint capsules as tea does help a bit. Do you stick your low fodmap diet all the time or just around your period?

[Loriiim in reply to CitizenErased]

I did the exclusion for 6-8 weeks, then "food challenges", where you trial each food type individually over 3 days for about 10 weeks. Came off it completely 2 weeks ago because I was pretty miserable (I've been on exclusion diets since July last year) & haven't worked out yet how I want to incorporate the changes. I think treatment for gut dispyosis is basically another special diet so I'm building up to researching & starting that. But yeah if your period is when your symptoms are at their worst you could just figure out your trigger foods & avoid them then. Mine started as hormonal but now present all month long.

[CitizenErased in reply to Loriiim]

Good to know! Thanks so much x