Hi everyone. I'm really struggling recently. My last flare up was absolutely awful to the point I thought I was dying (I know that seems dramatic)Everytime I ate 30 minutes later I would feel so poorly. It was like I had inflammation everywhere and had the worst pain in my calves, wrists, feet. Also awful palpitations Because of my symptoms iv had a colonoscopy through gastro which came back clear just waiting on biopsy results. And they want to do an mri which I'm having next week.
I just wondered if anyone with endo has any of these symptoms. Iv had blood tests done and all came back fine. I'm so worried about what's going on and I'm just fed up of feeling poorly all the time. I'm on progesterone only pill as well which isn't doing anything apart from stopping my period. Gynae wanted me to try double dosing which I did for 2 months but couldn't take it anymore as It just gave me bad diarrhoea. I see gynaecology consultant in 2 weeks. Do I go for the laparoscopy? Sorry for the long rant
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KB08
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Hi. Sorry to hear you’re struggling. I have. (long) history of endo and for years pain increased after eating. By chance a consultant suggested trying a low residue diet. Within 10 weeks , I had more pain free days than I had in the previous 10 years. Now I stick to food that passes more easily through the gut (low residue) and have more recently cut out milk (via a low FODMAP diet). I hope this helps you too.
PS I have also had loads of tests but these seemed to check inside the bowel when my problem is the scarring/adhesions surrounding it, and so all came back clear.
Hi. Thanks for your reply. When I have a flare it seems to be anything I eat its really frustrating. Weirdly vegetables can make it worse 🤷♀️ I had a lot of veg on a Sunday dinner when I was last in a flare up and my insides felt like they were burning. I am under gastro as well as gynae so I think he may suggest low fodmap diet. What foods do you find easiest to digest? Iv cut out milk too. X
Hi KB08, I started getting reactions to certain fruit & veg too (stomach burning sensation, swelling around the corners of my mouth, sinus issues, diarrhea) and I realised that my problem was a group of foods called salicylates -
I'm sorry to hear that & I totally sympathise.. I have endo + a ton of weird undiagnosed symptoms & it's been a real struggle to get taken seriously by my GP, who tries to blame everything on 'anxiety' but I know my body & I'm so sure it all has a physical cause. I wonder if it could be underlying Crohn's disease causing my sudden food intolerances & abdominal pain (my father has IBD so I'm genetically predisposed), I'm going to try to get investigated. Glad to read you are getting an MRI this week & I hope that gives you more clarity.. Sounds like you've had a lot of tests but just wondered if you've also had your thyroid checked (since hyperthyroidism can cause diarrhea & palpitations) x
Well my GP said my blood test for thyroid came back as slightly underactive and Iv been on levothyroxine for 3 months. So it makes no sense 🤦♀️ I'm obviously a strange case 😂 I tried to get them to test my magnesium level but said they don't do that in primary care so god knows how you find that out.Have you been referred to gastro? If not it's definitely worth doing that especially with it being in your family. My colonoscopy came back clear but waiting for results of biopsies which I'll get the same time as mri results. Even if nothing comes back at least you know you've ruled that out. Its horrible isn't it when your GP doesn't listen and makes you think it's all In your head. Mine also tries to put some things down to anxiety and it's absolutely not that. I get anxiety sometimes but that's from my symptoms not vice versa. X
I've heard it can be difficult to get the dose right with thyroid medication - verywellhealth.com/too-much... - which could cause hyperthyroid symptoms so maybe it's worth asking to get your levels checked again? I'm not a doctor though! A company called Medichecks do a serum magnesium blood test but it's expensive, really all these tests should be available on the NHS 🙈. For the gynae side, laparoscopy was definitely worth it for me, I had endo excised, recovered quite quickly & haven't had any more pelvic pain since then, but it really depends on individual circumstances.. I haven't had a gastro referral yet as GP tries to tell me it's just IBS but I have a lot of autoimmune type symptoms + family history so will go back & insist! x
Sorry for the slow response but it looks like you’ve had lots of useful replies. Other than milk, nuts, sweetcorn and Quorn I seem fine and even these are ok in small amounts.
Good luck! It’s a struggle to find what suits you, particularly when you feel unwell and may want to find comfort in food, but it will be worth it.
I've had trouble with eating too. I came across mast cell disorder issues and taking benadryl and avoiding high histamine foods has really helped me get things a bit more under control. I think I was dealing with SIBO for a while too from all the inflammation and too slow digestion (which the low fodmap diet is supposed to help with as Lou_R shared) but the benadryl helped me get things moving more regularly and now I finally have more flat tummy days than the pregnant bloated tummy that I had constantly before. And even though I lost a little weight, I actually feel like that was all just inflammation and I've been able to gain some real healthy weight. I'm not struggling to eat enough anymore and I don't feel starving all the time. And I've been able to start eating small amounts of off diet foods too, as long as I still avoid my major triggers.
You could have other issues--actually it sounds like you might with the wrist and feet pain, sounds like an autoimmune type issue as well (me too but still trying to diagnose which one.) But its worth a shot to see if taking benadryl helps when you have a flare, I was surprised.
(*try looking for dye free benadryl if you can. I noticed the regular helped and used it for a long time but I like the dye free capsules wayyy better because the dye and other additives were triggers for me)
Hi. Thankyou for your reply. That's really interesting 🤔 because when I have a flare up I get inflammation in my eyes and sinuses which they haven't linked together yet but I swear it is linked. My doctor has just prescribed me the highest dose fexofenadine to try (haven't started yet) but would be interested to see if it makes a difference to my stomach. I definitely think there's an autoimmune thing going on. I was really shocked nothing was seen on my colonoscopy because I was convinced I had something like crohns with how bad iv been. I'm glad you found something that helped you. I'm just getting frustrated with not having an answer. X
I know the frustration ❤️🩹 I was so bad off and I felt the same way. Its hard to accept I might not ever get solid answers but we all just have to keep trying to find what can help us manage for now. Even the antihistamines weren't totally effective for a long time until the overall burden on my body finally started to ease up. It takes a while ❤️🩹 be patient with your body and try to treat it kindly as its under a lot of stress 🙏 (not implying at all that the stress you're under is your fault or that you aren't treating your body kindly now)
Thankyou ❤️ if I find a reason for it at least I can start whichever medication I need to help me. I keep getting pain killers thrown at me but I don't want to start on anything until i know what it is if that makes sense. Like Amitriptyline once you start it you have to take it all the time. I'm happy to try that once I find what the issue is. Just have to keep pushing I guess. I'm having an mri next week and I'll ask to he put forward for the laparoscopy. X
Hi! I used to suffer from terrible endo pain from day 1 up until ovulation. Was just living off painkillers. I found that I tended to flare particulary after I ate sugar. Sugar is a massive trigger. Since June last year I went on an anti-inflammatory diet (no sugar, no gluten, no dairy, no alcohol, no caffine and low carb). Lots of vegetables, nuts and protein. I try to aim for at least 6-7 portions of vegetables a day. It is like night and day now. The last few periods I have had have been pain free, no longer experience pain after my periods either. Even after I started eating like this the pain started to decrease. It is not an easy lifestyle change (for sure!) but not being in pain is a massive motivator. I listen more to my body now and have a better idea of when I can have the odd treat (usually the days after ovulation and start of next period). Maybe its worth trying something like this?
Hi thanks foe your reply. Wow you've done really well to do that. I feel like it's something I really need to consider. But for me vegetables can actually make me worse when I'm in a flare up its so strange. Iv got so many strange symptoms that doctors have never linked together. But I'm pretty convinced it is all linked to the same thing. Just need to find out what that is. Gynae thinks endometriosis but my only option for that is to wait for a laparoscopy. X
Have you had an endoscopy? I had very similar symptoms when I was having gastro issues. I was diagnosed with a hiatal hernia, mild gastritis and esophagitis after endoscopy. Have you been diagnosed with endo? I also have stage 4 DIE.
Hi thankyou for your reply. I had an endoscopy October 2022. Found chronic mild gastritis which iv been on lansoprazole for since. He said that wouldn't be causing my issues. But iv got worse over the last year and a half. I get so much abdominal pain especially under the rib area and although I'm taking a PPI medication still get alot of gas, indigestion which sometimes feels like a heart attack its horrible 😩 So it's a possibility. If nothing comes of my results from colonoscopy and mri then I might ask them to refer me for another endoscopy. My gynaecology thinks I could have endometriosis but hasn't really given me alot of options to find out. Either the injection to stop my hormones (can't remember what it's called) or be put on the list for a laparoscopy which he basically tried to scare me out of doing. But I just want an answer for what's going on now because as you probably know with what you have going on it takes over your life doesn't it it's just awful 😩 xx
Are you taking any anti-inflammatory pain killers? You might need something to protect your stomach
I had such bad trouble with eating, didn’t matter what I ate - I always had a flare after and after taking something to protect my stomach, the change was noticeable and such a relief
Hey. Thanks for your reply. Iv been on lansoprazole since October 2022 when they found chronic mild gastritis on an endoscopy. They told me to avoid anti inflammatory meds as can make things worse. But I feel like lansoprazole isn't doing a great deal now and iv just got worse over the last year and a half and have so many new symptoms that I think all have got to be linked in some way. It's just draining feeling poorly all the time, isn't it 😞 xx
I struggled so much with food but once I got something which worked to protect my stomach, it helped. I think it’s because endo in itself is so complicated plus all the different medicines associated with that and their side effects, it seems never ending.
It might be endo related with the issues you’re having with food, but at the same time, it might not.
I really hope you get it sorted - but the way you described what happens after you eat seems as if you were writing out my own experiences.
Ye its a bit concerning that iv been taking it for that long and it's not doing a great deal. I have an mri on Friday so see if anything comes of that. It's even harder that I can't seem to link it to any food in particular. It's just when I flare up bad it can be absolutely anything. I have so many symptoms I feel like doctors dont know what to do with me. Consultant mentioned IBS but I can't see how that would affect my joints. X
By poorly you mean pain in your wrists, calves and feet? I'm in pain (from a bloated stomach) when I've eaten too much fibre or consumed artificial sugars (I don't eat the latter now). If it's your wrists, calves and feet then you need to see a consultant that isn't gynae or gastroenterology. It sounds like an issue with your joints or autoimmune, but I'm not a doctor.
I know it sounds odd but. So I get abdominal pain, diarrhoea which comes not long after eating, palpitations, awful nausea, but also affects my joints especially hands, feet and hips. On my last flare up my calves were so painful. I know it makes no sense which is why I get frustrated with not having an answer 🤦♀️ iv had fibromyalgia mentioned to me by my gp and also endometriosis. Alot of people have mentioned autoimmune. Feel like I'm not getting anywhere. X
The abdominal pain and diarrhoea sounds like an intolerance to something you've eaten. Your joint pains and swelling in your calves, hands etc sounds like something else. Maybe you could ask to see rheumatology re the pain in your joints and potential autoimmune? Sounds unpleasant so I hope you get some answers!
Gastroenterology thinks ibs but I don't see how that can affect my joints like that. I think your right and I need to ask to be referred. My mum has rheumatoid arthritis and after looking that up says it can cause gastro issues so I definitely think I need that ruling out at least. Iv got an abdominal mri next Friday as well so see what comes of that. My gp told me they don't do allergy testing anymore either so that's another thing you have to pay for now I bet. X
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