I have always been told I have IBS-D/C for years (it alternates). But I've spent hundreds of pounds running tests on my gut, and the only thing that came back was a slight imbalance in my gut flora - not enough to cause my symptoms as such. No SIBO either. I'm now starting to wonder whether it could be linked with endo, instead?
I'm ALWAYS bloated, even in the morning. it gets worse after I eat. My fear of an IBS flare up is so crippling now I struggle to leave the house if I don't know its a short journey and I can access a toilet when I get there. However I've tried lots of nutritional therapists/traditional approaches/probiotics etc. and nothing is really helping.
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foursimplewords
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Hey I’ve heard that a lot of people are told their symptoms are down to IBS for years I was lucky and after trialing about 3 different types of tablets for IBS with them having no improvement they believed me and sent me to gynae. I have recently been diagnosed with endo and yesterday I was contacted by an endo nurse who asked about my current symptoms etc but anyway...I have bloating as well and she said endo is an inflammatory disease and many people with endo experience bowel issues as a resuly but she said a lot of women with endo find it beneficial to go gluten free and she believes this will help with my bloating. Hope this helps xx
Initially the drs thought mine was ibs- tho they couldn’t explain my cycle abnormalities.
My fertility doctor ended up doing a laparoscopy- even he thought it was bowels but wanted to rule out gynae. It was endo- my endo was in POD and it caused both gynae and bowel symptoms. He apologised for getting the diagnosis wrong - he was always supportive and did take my concerns seriously unlike my dismissive now ex GP. 🙄
If your endo is near your bowels it definitely causes bowel issues particularly bad during period.
Hi, I think many of us have been told we have IBS. It’s a syndrome (ie a collection of symptoms) without one cause. It seems that endo is one possible condition that causes it. So I think it’s not so much a question of being misdiagnosed, but of looking a bit more deeply into what’s behind it.
I sometimes think for me it’s a bit of both. I’ve had some IBS symptoms all my life, but they have definitely got worse as my endo has progressed.
I was diagnosed with IBS for roughly 7 years before finally getting diagnosed with endo during my lap. I saw about 8 different doctors, a&e, gastro consultants, nutritionists who all said I definitely have IBS as I had typical sighs. My doctor then went down the route that I was all in my head as stress was causing an upset stomach and pain. He would not believe that the only stress I had in my life was the pain. Before being referred to gynae I mentioned endo to 3 docs who shoot my idea down instantly. The were all set on IBS. Finally I demanded a referral and guess what.... I was right, I mean its only my body so how dare I have a better insight than the doctors on my symptoms. Anyway my doctor knows Ive been diagnosed and Im in a lot on pain, currently on codeine and tramadol but my doctor warned me that he will be stopping them once my exams are over as again he is assuming I can "turn off" the pain as its all in my head. On another point I had the coil which made me feel very sick, 3 doctors would not accept that the coil was to blame, they said the sickness was in my head. Got the coil out last week and no sickness since. Im getting really annoyed with no doctors listening to us and taking our symptoms seriously! Sorry that all turned into a rant =/ although the gynae doc said loads of girls/women are diagnosed with IBS before endo is discovered. Also like fabbird said all IBS is is a collection of symotoms that dont fit in with any other disease so the call it IBS. A great doctor I worked with told me IBS techinally isnt a real thing, not like endo or cancer in that sense as its just a name to give people that they cannot diagnose. Also with IBS there are no tests, the only way to diagnose is exclude other conditions.
Yes I kept getting told I had IBS until my dad dragged me back to the doctors and demanded I got saw by gyanecology again and when I got seen she booked me in for a laparoscopy and low and behold I had endometriosis. But unfortunately now I have got complex things going on with my bowel and am currently in hospital with a feeding tube in to help build my strength up.
Yes i was told i had IBS years ago before i was diagnosed with endo. Recently symptons have got alot worse and i have just had tests for bowel diseases and Celiac, that all came back all clear. I am currently on a Low Fodmap diet ( only 2 weeks in ) and it really seems to help so far.
I have severe IBS but I also have endometriosis, but as you suggest, my endo was misdiagnosed for around 8 years, even with countless hospital admissions and a ruptured ovarion cyst. Be persistent with them, at the end of the day you know your body better than anyone else.
Yes i have been misdiagnosed, they were 100% sure i had endo all my symptoms led to endo so i had my lap and nothing!
So they sent me to a gastro who said i had ibs c but she wanted me to give up gluten and dairy as she said 60% of people with ibs have a intolerance and just dont know it and there the main two!
So i came out there that day and stopped it all and i just got better and better, all these years ive suffered and i was obviously intolerant.
So it can all b quite easy to misdiagnosed as the
Problem is it all in same area and sometime they can effect each other.
As in my periods were horrific but now there not so bad at all, it was the food i chose to eat at that time of the month that made my ibs worse not my period
Hey! Sorry to hear about your struggle with your gut! I had a similar process. Started getting bowel/stomach type pains 8 years ago which was diagnosed as IBS-D. Went through many years of anxiety surrounding it which exacerbated my symptoms to the point I struggled to leave the house and function normally! Anyway, after a lot of counselling and work on my anxiety and more recently a diagnosis of endo in PoD everything makes sense and I'm much more in control.
And IBS diagnosis is so broad it felt like I had no control over it. But improving my diet, managing my endo and dealing with associated anxiety has made life worth living again! I feel for you. Things will get better!
Yes. I was told for years i had IBS until i was diagnosed with Non sti pelvic inflammatory disease which was actually caused by a ruptured endometrioma. I was then told i suffered from chronic constipation. Turned out my fallopian/ovary/endometrioma was wrapped around my colon causing chronic partial obstructions. My bowels where left suspended. God knows how long for, probably years. They removed the follopian and removed the endo off my bowel. Its not cured me. I still suffer from 'impactions' ie obstructions. I live on/off laxitives to keep me somewhat comfortable. My colon is permanently damaged from aghesions and endo. They still like to throw 'ibs' at me every now and again but i just laugh!
I qas actually diagnosed with ibs but still not sure if my gastro problems are something like gastroparesis or endo but yeah many women are misdiagnosed ibs which is stupid because many women have more period problems not bowel with endo 😂
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interestingly I have coeliac disease and am lactose intolerant so avoid these two anyway xx
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