IBS used as "catch all" diagnosis?

[Blue_Bird0]

For the last 3 years I've been told it's just IBS... and every time I'd go to the GP because my bloods for coeliac were normal they'd just give me another prescription to manage the symptoms as it has progressively been getting worse for the last 5 years. By September I ended up having 7 different prescriptions to manage symptoms and side effects and having a severely restricted diet of 1 "safe food" that would still set off symptoms... Had tried all the IBS treatments I could find and was desperate -

After a recent A&E admission I was told to push for appointments/tests as they suspected something was wrong but as my pain had decreased while I was there they decided not to go through with exploratory surgery. The thing is nobody ever asked me for my family history and my dietician recently sent over some pre-appointment paperwork and it was the first time I'd been told to inform my GP if I've got a family history of endometriosis and or ovarian cancer.

Now, I've had a ca125 blood test that has shown to be elevated, having an urgent ultrasound next week and GPs have finally stopped saying there's nothing more they can do. They're now saying they highly suspect endo and it would also fit far better with my symptoms-

Wanted to share this as I feel there should be more awareness of the conditions that can also cause symptoms very similar to IBS as they're not always all eliminated before giving a person an IBS diagnosis.

Hoping this helps someone else xx

[Lola3341]

Hi I've had pretty similar to yourself got told I had IBS for years and thats what I was being treated for. I had awful pains in my lower stomach,hips back and legs, I have suffered terrible constipation for a long time odd loose stools they always blamed it on a gastro disorder and had alot of tests surrounding this until last year I had an internal ultrasound as the pain was so bad I was found to have adenymiosis, bulky uterus,fibroids don't even think It has anything to do with IBS anymore they seem to do this frequently

[Radhak108]

I’ve had ibs for the last 6 years, and the last doctor I saw said that seeing as it hasn’t gotten significantly worse, it must just be ibs. He said if it was cancer I would have deteriorated a lot by now.

But now I’m doubting this as you said you’ve had symptoms for 5 years before getting diagnosed with endometriosis.

I’m not sure what I can do though as the doctor said there are no further tests that need doing.

[Blue_Bird0 in reply to Radhak108]

Yes, there are things other than cancer that can cause ibs like symptoms so it's worth trying to get it checked especially if the ibs treatments aren't helping/ you have a family history, usually they just check for autoimmune diseases like coeliac but there are other things that can cause the same symptoms. Also, things like coeliac don't necessarily always show up on bloods. I hope you are able to get help or tests done as I know it can be very frustrating x

[BabsyWabsy]

It's infuriating how 'women's things' get dismissed, even by female doctors. I am heartened that this topic is currently under discussion as a form of misogyny. 'Just IBS' also seems to be a default for 'I don't really know what the problem is'. I am pleased that you are now getting some action, but it can be like pushing steam uphill to get anyone to take you seriously. Good luck with your further tests and let us know how you get on.

[Blue_Bird0 in reply to BabsyWabsy]

Yes exactly this! I had an out-of-hours GP in the hospital tell me once that IBS was the term they used once they had eliminated other conditions and could no longer think of another explanation... The sad part is because it's seen as a chronic but "harmless" condition they often just give up on trying to treat it and want you to somehow learn to deal with it... Am hoping this begins to improve over the next few years, thank you

[BabsyWabsy in reply to Blue_Bird0]

Next week I have my long term conditions review. My gut issues are not a part of that, even though I have had them for 10+ years. If that isn't long term, I don't know what is. I have a diagnosis of microscopic colitis, which according to Guts UK, is an inflammatory bowel disease. I also have a diagnosed wheat allergy. Both ignored for the purposes of my review. Think I might ask for an EpiPen, as my allergy has the potential for anaphylaxis. Neither of which could be considered 'harmless'. Originally, I was dismissed as 'Just IBS'. Hence I am in this group. One doctor actually said to me 'if something upsets your tummy, just don't eat it'. I refuse to see him now.

[Blue_Bird0 in reply to BabsyWabsy]

Yes, like the elimination diet never worked for me and whenever a doctor asked if I had tried the FODMAP diet I always had to explain that if I cut out everything that makes my pain worse I wouldn't be eating anything which is a problem even without a strict diet... I can't believe a doctor could actually say that to you! Especially with the risk of developing deficiencies etc. Glad you are able to stay away from him now.

[BabsyWabsy in reply to Blue_Bird0]

Thank you. He is still in the practice, and is still a patronising, pompous prick. I have expressed my concern to the practice manager.

[xjrs]

Thanks very much for sharing and for your persistance. Good luck.