Had "IBS" for 9 years, getting no help from GP. Scan said that I had multiple small cysts on kidneys & a few on my liver. Any link to IBS?

[cummid]

I have had "IBS" for nine years now but have been given the run around by NHS, and it feels like they don't care. At screaming point as I really need answers. Had a scan lasat year but htey forgot to enter the results in my notes so had to get another one recently which showed that I had multiple small cysts on my kidneys and some on my liver but that they are "not of concern yet". Does anyone know if there is a link between IBS and kidney cysts? I feel so unwell all the time, really bloated and tender, poor appetite and feel full quickly as well as frequent toilet trips. I feel so fed up and frustrated. I feel that they just say "IBS" without trying to find the real cause. Mine is not food related.

[buggins55]

The problem is they don't really know what causes it and the symptoms are so varied and personal to each individual it's difficult to treat, but for the sufferer very difficult to deal with I know I've had this most of my adult life and i'm cracking on!! I've never heard of a link to cysts and what you describe certainly sounds like classic IBS, mine doesn't appear to be food related either, anxiety and health worries frequently go hand in hand with it as well, I'm not a lot of help I'm afraid but know what you're going through and you are not alone in this

[Superzob]

I don’t think there’s any connection. I have several kidney cysts (one is an inch in diameter), but I was told that they rarely cause problems. They result from a blockage in the nephrons but, since there are a million of those in each kidney, some blockage is not significant. I guess cysts in the liver are blockages in the biliary ducts, so maybe the same argument applies?

On the other hand, IBS is not a clinical condition in the same sense; it is a dysfunction, which is why the medical profession (who are trained to treat diseases) struggle with it. Also, as buggins55 says, the dysfunction varies between individuals and the symptoms can vary widely and change rapidly. Consequently, unless you have an underlying disease (BAM, coeliac, etc), it’s difficult to pin down, especially if you’ve already ruled out food intolerances. But there is plenty of advice here and on the IBS Network which might help, but there is no guarantee of a cure.

[cummid in reply to Superzob]

Thank you. Just beyond desperate for answers, any answers. Instead I just get passed from pillar to post and it really feels that the NHS doesn't really care. You have no idea how desperate I am to find a connection.

[Sparrow58]

To be honest I think we are all looking for answers to help our IBS. It can be quite disappointing when you have tests etc. only yo find it is not connected. It is hard when NHS do not seem to help and I have been told '' it's just your IBS '' on a few occasions. I feel only other people with IBS really understand.

We have to learn a coping mechanism for our individual symptoms and get advice and understanding from others on this site.

[cummid in reply to Sparrow58]

Thank you. I really think that the NHS could do an awful lot more though. If people can afford to pay for private help this can lead to more answers, by why should we pay for this? I told my gastroenterologis what the (excellent) nutritional therapist said to me, to which she brusquely replied "We don't talk to them".

[Sparrow58]

The NHS want to cure with medicine and as IBS is not one cure fits all it is difficult. Sciencetists are starting to look into gut health and what is in the food we eat and the processes it goes through to produce it. A good nutritionist takes an individual approach and advices changes over time. Time is the one thing doctors do not seem to have these days, people too, it is quicker to pop a meal in the microwave than to cook a meal from scratch. I have had IBS for over 20 years and accept there is no cure but try my hardest to manage with it. All the best x