Endo and ibs?: Hi all, i posted recently... - Endometriosis UK

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Endo and ibs?

Mewbookitty profile image
24 Replies

Hi all, i posted recently about trapped wind and endo but recently I'm concerned there's more to it.

Not only am I full of wind recently and but after eating I'm getting nauseous and stomach ache all over my abdomen which radiates into my back or sometimes it's just dull pelvic cramping. I either experience cramps and having to run the loo or I hardly go at all and its very hard stools (tmi) anyone else experience the same?

I'm starting to worry there is something really wrong. Thanks for reading.

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Mewbookitty profile image
Mewbookitty
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24 Replies
Lcbxo profile image
Lcbxo

Hi - I'm not diagnosed yet but suspected. I have horrible IBS symptoms like you mention as well as pelvic pain. Most days I can't even finish my plate of food before the cramps, gas and need to use the loo starts.

I understand your concern, I worry everyday about my pain and symptoms but doctors don't seem bothered. Have you seen a gastroenterologist or had bowel investigation? I've had a colonoscopy and they found nothing, frustrating because I'm still in pain but glad I don't have anything serious. If you haven't, perhaps it's something to ask your doctor about. Try peppermint too, or buscopan tablets. Not a cure I know but just a short term thing.

Xxx

Heidi11 profile image
Heidi11 in reply to Lcbxo

Hi I have the same IBS symptoms too my consultant has told me I have an acute bend in my bowel poss from endometriosis and I'm awaiting bowel resection, I take colpermine peppermint oil tablets and they really help, all the best 😊 xxxx

NW248 profile image
NW248 in reply to Heidi11

is your consultant one off the BSGE list (bsge.org.uk/ec-BSGE-accredi..., they are the only ones who should be dealing with endo-bowel complications as I understand. I would suggest that you insist on seeing one of the ones off the list as the outcome is likely to be better.

Mewbookitty profile image
Mewbookitty in reply to NW248

No he isnt on there I will be seeing him again in March but I'm not sure I an wait that long if it's like this constantly....I was going to try to see the doctor next week but I have a feeling I will get Palmed off x

NW248 profile image
NW248 in reply to Mewbookitty

Insist that your GP refers you to one on the list as a matter of urgency. It is NHS policy that only the ones of that list should be used once there is bowel involvement, as I understand it. These ones are specially trained to remove the endo from around the bowel with as little damage to the bowel as possible. So seeing one of them might mean the difference between a bowel re-section keeping it intact. Also, are you on any medication, I've found a huge difference since I've been on Zoladex.

Mewbookitty profile image
Mewbookitty in reply to NW248

I have problems and I have endo but I'm not 100% sure they're linked but possibly they are so will they refer me asap?

I was on prostap which helped massively but towards the end of my injections I got problems again but since finishingbthe injections it's gotten even worse. But since Christmas evening I've been suffering none stop with a little help from buscopan x

NW248 profile image
NW248 in reply to Mewbookitty

Sorry I didn't see your reply earlier. You should get a referral from your GP right away but it can take months to get to see a specialist. It cost me £200 to see one privately. Then got moved to his NHS waiting list for surgery. But I got put on Zoladex about a month after seeing him once I'd had an MRI and blood tests, so that has helped hugely. I now feel human again and am going for surgery in a week.

Mewbookitty profile image
Mewbookitty in reply to NW248

Good luck with your sugery! I'm glad your finally getting somehing done about it.

I'm going the doctors next week so hopefully I can be referred. I'm feeling better but still crampy and wind I can't tell now if it's bowel pain or endo pain or both. Feeling very emotional this week but I think it's just tiredness and Fed up of it because even when I feel better I still have that niggling ache x

Mewbookitty profile image
Mewbookitty in reply to Lcbxo

Thanks for responding I feel a lot less worried now knowing I'm not the only one, ive always suffered with digestive issues but never this bad!

It pesisted until 5am when it eased off but when i had breakfast it started so I've taken some buscopan and its helped ease it but I still feel like there is a niggling knot in my stomach but ay the same time im hungry x

NW248 profile image
NW248

Sounds like the sort of problems I was having for ages before being diagnosed with endometriosis. With me the problem seems to be that the endometriosis is pressing on the bowels and stopping normal movement. I'm waiting for surgery at the moment and I'm on Zoladex and tibolone.

Have you been diagnosed yet, had surgery? Sounds like you need to see a recto-vaginal endomoetriosis specialist. The approved list is here.

bsge.org.uk/ec-BSGE-accredi...

Booboo08 profile image
Booboo08

I have exactly the same. Even called an ambulance at one point as passed out in pain in back, under arms and top of stomach.

Turns out my bowel is fused to my womb and had chronic constipation.

I now live on stool softeners and cut out fried foods, fatty foods, diary, white bread, chocolate, caffeine and milk.

And have no pain. This isn't easy as Ilive on scrambled egg and veg and white meats.

But now I'm pain free. I too had this pain for 6 months and gradually got worse.

Do you have a diagnostic lap booked as this confirmed it for me last Friday.

Lost 3 stone cos pain is out of the world.

Peppermint Black Caffeine free tea will help aid digestion and peppermint cordial from asda.

Don't worry your not losing your mind. Cut out foods in endo diet and let me know if condition improves.

Xxxxxx

Mewbookitty profile image
Mewbookitty in reply to Booboo08

Thanks for replying, yeah I think I will have to try this to see if it helps I definitely think fatty/acidic foods don't help.

Do you find it affects your upper stomach also? As sometimes I feel sick but also like I'm being punched in the stomach it's a horrendous ache I didn't realise problem with your bowls and endo would caue upper stomach pain. Yeah I had a lap 2 years a go but nothing was mentioned about my bowel x

2603 profile image
2603 in reply to Mewbookitty

Hiya I'm the same and problems with bowels/pain just keeps getting worse! I recently had a gastroscopy and he said I have gastritis...which does feel like you've been punched in the stomach! And my digestive system it spasmed and inflamed...he recommended I start the low fodmap diet and take biokult! I'm seeing an endo specialist in march though....its definitely all connected!

Mewbookitty profile image
Mewbookitty in reply to 2603

I know it sounds crazy but I was panicking about cancer and all sorts, you see it everywhere on tv nowadays and I do worry a lot which I know doesn't help.

Yeah sometimes I feel a spasm in my stomach I managed to go the loo now with much difficulty and feel better but still feel I have to go and have pain.

I hope it all goes well for you!

I'll have to get to the doctor next week x

applebird profile image
applebird

Hey rachey, what you describe is pretty typical of endo, you also might have concurrent upper gi issues ie gall stones, gerd or something along those lines. Defo get to see a bowel specialist with endo training. Peppermint tea has helped me massively, also try the endo diet (see endo resolved website).

Good luck x

Mewbookitty profile image
Mewbookitty in reply to applebird

Thank you for replying, I will definitely be going I won't leave my doctors until they refer me and also trying the endo diet, I think the days of eating what I want have now passed!

I've been drinking fresh ginger tea which has helped a lot I'm thinking of trying peppermint oil capsules x

applebird profile image
applebird in reply to Mewbookitty

Good stuff - it really helps, I've found the peppermint tea more effective than buscopan! Also if you're having more nausea/pain when lying down at night, try eating no later than 7pm, smaller meals and prop yourself up in bed. If it's gallbladder you're likely to have pain, upper rhs and it'lol flare more with alcohol, dairy, fatty stuff. Any form of gerd ie gastritis pain could be whole upper abdomen but mostly middle to lhs and you'll feel sick after eating anything! Again could be the endo or inflammation of bowel but you'll not know until they do some tests. For the former dietary changes, ranitidine and esomeprazole really helped me, so if that sounds like you maybe your gp could help out by prescribing something whilst you wait for your specialist appointment x

Mewbookitty profile image
Mewbookitty in reply to applebird

Thanks for replying, it changes a lot i seem to go through phases.

I was put on omeprezole a few years back for acid reflux which helped but the cramps are new but have settled since going the toilet but still bloated and slightly crampy.

How did you go about asking for tests? I find my doctors very reluctant to send me for tests, took 3 years to get diagnosed with endo x

applebird profile image
applebird in reply to Mewbookitty

re. Getting referred

I had chronic diarrhoea, collapsed and lost a stone I think in 3 wks - ended up in a&e with dehydration after vomiting 20 times in a 4hr period. After that I got a lot of tests. Turned out I had been prescribed too many anti inflammatories and my colon was in the state of a crohns sufferer! 6 months of steroids later I was ok but gi trouble persisted. Several scopes later. Referred back and forth from Gynae to gastro, they now think it's endo related - I started a daily symptoms diary (would highly recommend this) and realised I only had pain and trouble eating around the times I was bleeding, also now preg and symptoms disappeared for the most part - bit of reflux but then I have a hiatal hernia so that explains it!

Keep pushing, change gp if necessary.

Mewbookitty profile image
Mewbookitty in reply to applebird

Wow you've had it rough, I'm sorry you had to go through that but glad your seeing some improvements!

I finished my period Wedesnday and symptoms kicked in Thursday evening/Friday evening.

I will definitely make sure i push them thank you so much for all your help!

Mewbookitty profile image
Mewbookitty in reply to applebird

Thanks for replying, I will have a look thank you, yeah peppermint and ginger are lifesavers.

Feeling much better today which is a relief, ive suffered with endo pretty much since being a teen but I didn't realise it could cause so many other problems relating to digestion especially x

abbiclaire profile image
abbiclaire

I have Endo and IBS so I can completely sympathize! I can terrible pain and feel so ill after I eat!

But I was diagnosed with IBS before I was endo, so I've managed to find out what foods affect me the most. Maybe try exclusion diets. 1 weeks cut out gluten, next week cut out dairy and so on! Mines bought on by dairy.

Good luck and I hope you feel better soon x

Mewbookitty profile image
Mewbookitty in reply to abbiclaire

Thanks for replying, yes if started this week cutting out stuff I got given some fried chicken today and straight after I felt Ill so I think oily food definitely is a trigger...

I hope I can find some peace soon! x

PeacockPrincess profile image
PeacockPrincess

Same :( Been to the doctors and they keep telling me its IBS, although i've tried the meds and they don't help (they just made me worse). I'm not diagnosed yet, but they are finally looking into it. I get the pains and nausea too. I can't always finish my food, and some days I can barely stand and get up/get dressed/go about daily life. :(

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