I'm a 27-year-old female and have been having symptoms since August 2020.
I'll summarise my current situation (please see my previous posts for more detailed explanations). I've been having constant pain in my lower left abdomen near the hip bone. I can feel a lumpy area there (possibly my colon). The pain is significantly worse when laying down, and the pain occasionally switches to the right lower abdomen as well. The pain feels like trapped wind/gas and is more of an uncomfortable sensation, rather than a 'pain'.
Spoken to many GPs over the phone and straight away was diagnosed with IBS. They gave me peppermint capsules and Mebeverine and sent me on my way. They ran blood tests and finally, at my insistence, stool tests. Iron levels came back slightly low and there were some traces of blood in the stool samples, but apparently not enough to do anything about it. I was told to take supplements. GP then said it does not sound like IBS as I'm not reacting to food and my bowels haven't changed.
I then took matters into my own hands and tried low Fodmap for about 6 - 8 weeks - no improvement. Also tried gluten-free and lactose-free - no improvement. By this point my symptoms were getting worse, I have been unable to sleep because of this discomfort, and I've lost weight (I'm already very slim) and have become constipated due to cutting everything from my diet. Spoke to my doctor again, who advised me to stop the diet as there had been no change, and gave me laxatives. I should also mention that when I press on the lower left abdomen, it makes a horrible squelching noise, like there's liquid sloshing around in there. When I showed my GP a video of this, he finally decided to refer me to a specialist in January 2021 as an urgent referral. During the time waiting for the referral to the specialist, my doctor gave me morphine to try ad control the pain. This didn't do anything (like I said, it's more of a discomfort rather than a pain).
A month or so had passed and I hadn't heard anything. I rang the department and they then told me my urgent referral had been rejected from the specialist and there are thousands of people in front of me and to be patient, and I'd been downgraded to a routine appointment. I then had to go back to my GP, who was unaware of this, and he again tried to put through my request as urgent. I'm still constipated and still have not gained back the weight.
Another GP rang me last week to tell me that my referral was again rejected by the gastroenterologist. This GP said it was definitely IBS, nothing to worry about, as I'm young and healthy. She said I need to go on low Fodmap for at least three months and has told me to take amitriptyline. I'm flabbergasted by this and was very upset when she rang me. I told her that I don't think it is IBS as I've not had any imaging done and have had no response to diet changes. She completely dismissed me and said they won't do any scans or camera tests because of my age and the fact that all my tests so far have come back within normal range.
I rang up the gastroenterologist department again and they said I do in fact have an appointment (my routine referral from January!) and it will be a short phone call on 10th May. I asked why I hadn't been told about this appointment, but they couldn't tell me. Based on the feedback that the department sent to my GP, it seems I've already been given the IBS diagnosis and they will not be willing to investigate further. They will not do a CT scan or a colonoscopy. I'm completely desperate now and am looking into going private, which would have a huge financial impact on me. The NHS has completely failed me. Is there anything I should push for during this phone call on 10th May before I look into private options? I thought they couldn't diagnose IBS without doing any imaging tests to rule out anything else? It seems I've been labelled as having IBS by my incompetent GP and am just being fobbed off because of my age.
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WolfHallow
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IBS cannot, by definition, be diagnosed until and unless all other possible diagnoses are ruled out. You don't say which area you live in, but rather than private for everything, you may be better off contacting a specialist bowel hospital (like St Mark's at Northwick Park) and ask for advice. Also is there a "Healthwatch" group in your area, as they will be able to advise you of the many options available, alternatively contact PALS at the hospital you are referred to and they will act on your behalf with the medical staff to attempt to resolve your queries. In the meantime do NOT take morphine if you don't need it as it should only be issued for moderate/ severe pain and not just a feeling of not being right.
I definitely feel like I'm being fobbed off because of my age. The doctor brings up the "I'm too young for anything else" excuse every time I speak to them. I've been speaking to so many different doctors and they're all giving me conflicting advice. I don't see how else I can get any further testing done at this stage without going private. I live in the Midlands.
It seems to these days to young / to old !!! ridiculous but I come across it all the time ,in my case I'm to old I think... gave up asking a few years ago now with lockdown it's pointless unless you are working age 20 / 55 unspoken rule it seems
IBS is not a real diagnosis of a specific illness. It is the term they use to describe what you have when they have eliminated all other options by testing and trying things. IBS is basically a diagnosis that you don't have any other gastro disease, because we tested for them,. That's it. E very one is stuck in the nebulous catagory of IBS with tons of different symptoms.
I was only going by what the NHS website stated for IBS diagnosis: that it can't be diagnosed without testing for everything else. I haven't been tested except for a blood and stool test. I've not responded to any 'IBS' treatment and don't have the typical symptoms of IBS either. Surely I should be sent for further investigations and not just be put on permanent pain relief to mask the symptoms?
Then ask your GP about what the NHS web site says (ie. that you can't be diagnosed with IBS without testing for everything else). Ask him why you don't need to be tested for everything else. The best thing is to write down all your questions before you see him. Presumably your doctor has ruled out chrones disease and ulcerative colitis because he thinks you don't have the symptoms that those conditions would cause. Just ask him a lot of questions. Doctors are not good at explaining the reasons for their diagnoses and that leaves a lot of patients just worrying.
Thank you for replying. I have already expressed my concern regarding lack of further investigations, and referenced the NHS website when it comes to IBS diagnoses. My GP just insisted that it was IBS and no more tests needed to be done. I will again express this in my phone call to the specialist on 10th May - from my understanding, bowel disease has not been eliminated because they have not conducted a colonoscopy for signs of inflammation. I'm not trying to sound like a hypochondriac, but I just don't feel like I've had enough tests to rule out the possibility of something else that could be causing me symptoms.
Hi wolfhallow, i find when i meet my gastro that it is useful to write down my full list of symptoms, what medication I am on and have tried and what my concerns are. There are a number of functional gut disorders of which IBS is simply the best known. So it is very possible that scans wont show up anything but for peace of mind they are important so do push for colonoscopy or CT scan. Ps low fodmap diet does not work for everyone sadly. Diet has no effect on my symptoms and i have spent 3 years experimenting with diet! Good luck with your appointment
This is a good suggestion - I'll write down a list of everything I've tried so far and my timeline of symptoms. Fully expecting to be told just to go on a diet and take painkillers though - I don't know how I can phrase my requests for any imaging tests when I've been rebuffed so many times thus far (without sounding like a hypochondriac!)
One option is to see a gastroenterologist privately. See what he thinks and whether he thinks you need any more tests. It's very upsetting when you have symptoms that are not clearly diagnosed and treated. Unfortunately, it happens way too often.
That is my last resort option if my upcoming NHS appointment ends up getting me nowhere. I've never gone private before. I've seen the consultation fee, but it's the scan costs that are crazy. I can't afford thousands of pounds. Is it possible to be referred back to the NHS for scans or can they still refuse to accept a referral (as has happed so far from my GP)?
I have found it useful, when expecting a phone consultation, to send an email beforehand to the department addressed to one of the gastroenterology consultants/or Registrars. The list should be on the hospital’s website. Tell him/her your hopes for the call and the questions you have - state the facts ie dates , number of times, type of pain, level of pain, location, what you were doing at the time. Try to be concise and not make your email too long. Best wishes.
The US has a different system than the UK. In many ways the US system is easier, especially if you are over 65 (when everything is covered), or insured. The communication in the US, however is not the greatest either.
Have you looked into bowel endometriosis? I have this and it’s similar to IBS. If you have this it is important you are seen by a specialist. One of the ways to diagnose is MRI so I would push your GP for one of those, good luck. It’s ridiculous how we have to fight to be heard.
Interesting you should mention this. I had a pelvic ultrasound last year that revealed small follicles on the ovaries. They said it looked like PCOS but no treatment was needed. The gynaecologist said that this would not be the cause of the pain I'm experiencing, and he thought it was gastro-related. He said there is a chance it could be endometriosis, but that could only be diagnosed via laparoscopy. Until I get the all-clear from gastro, he didn't want to send me for any unnecessary surgeries. So I'm a bit stuck in the middle at the moment in that respect - until gastro have ruled out anything, gynae won't pursue anything further.
Amitriptylene in your case is not for depression, it affects your gut motility so is used for that. Change your GP and start again. You can have a bit of blood for lots of reasons, not all of them are sinister, especially at your age. Don't snack between meals, this is VERY important.
I've spoken to at least three different GPs over the last few months. Of those, only one has been proactive (the one who referred me to the gastroenterologist). My 'good' GP has been fighting for me to get a referral to gastro because he said he doesn't know what it is, but his referral keeps getting rejected by the hospital. Another GP keeps insisting it's IBS. It's such a frustrating process.
I’ve been having problems for over a year now, pain in lower right hand side, passing bloody mucus when I go to the toilet, losing weight, unable to sleep. My GP suspected Crohn’s, as my mother had it and all the symptoms matched. Since then I’ve had all the tests and they have come back negative, so I’m no further forward.
But what I will tell you is, back when it first started, April 2020, I was so poorly my friends encouraged me to go to A&E. I didn’t want to go because of Covid etc, but I got so desperate one morning I just got up and went. They couldn’t have been nicer and more sympathetic, they did a CT scan right there and then. Now I’m not sure if this would be routine, but if you feel like you can’t go on, I’d go to A&E, especially mention the blood and they might do the CT scan for you.
I did actually go to A&E at the end of last year. I didn't want to because of COVID, but I was just getting nowhere with my GP. They wouldn't do anything, just told me to take paracetamol! I can't see any blood, but my doctor told me the FIT test came back slightly positive. Another doctor told me the result came back normal! I'm at my wit's end.
I was going to suggest the same, go to a and e next time the pain gets bad, it's where I got an ultrasound at 29, when my pain got really intense after my own gp was fobbing me off saying I was too young for gall stones or bowel problems and it was just stress. It actually was gallstones. I understand how you feel. I now have ibs, after having many tests to rule out other things but it's worse on my period and ovulation. Did you know that ibs is affected by your hormones? It definitely is for me, the pill can really help. Hope you get some answers
I was referred to gynaecology to see if it was hormone-related. My discomfort is certainly in the lower abdomen/pelvic area so it's still a mystery which area is causing me symptoms. I had a pelvic ultrasound which revealed follicles on the ovaries (PCOS), but they said there's nothing they need to do about it and it wouldn't be this that was causing me pain. They did try me on a pill but I didn't get on with it at all. My gynaecologist said they will only test further for something like endometriosis if all of the gastroenterology tests come back normal. I haven't heard back from them since.
Endo is important to rule out. I had an internal ultrasound which showed up a large fibroid so had a laparoscopy which showed various problems including bits of bowel stuck to womb etc. Urgh! It can only be diagnosed via investigative surgery with a camera and my pelvic pain is now so much better. Have you tried the mini pill as an alternative to combined pill? This has been like a miracle for my endo. Gut issues remain though
Sounds like a similar tale to me, although I'm surprised you haven't been given a colonoscopy - I had one without too much hassle, well this is the NHS and took six months but it was done and nothing found. Last time I spoke to my GP, two weeks ago, he agreed to a gastro referral once I'd done some more blood and stool tests and none of them came back with anything. I have to say I'm not feeling too bad at the moment and I've been taking probiotics (Actimel) for 2 weeks and am going to continue for another 2 weeks before speaking to the GP again as it may be that feeling better is just part of the rhythm of this poxy thing before descending into the pit again, so if I start feeling bad again and I'm taking the probiotics I know I can rule them out as having any beneficial affect. You definitely need a colonoscopy though, can't understand why your GP is resisting it. It will hopefully show nothing untoward but it's the first procedure I'd say anyone with these symptoms should have.
My GP is resisting it because of my age and the fact that the blood and stool tests have come back within normal range. Although, the doctor I spoke to before said the stool test did have traces of blood and my iron level was on the low side, but nothing to worry about. I don't understand why my results are being interpreted differently. Unless I tell a white lie and say I'm actually seeing blood, I'm not sure how I'll get anything like a colonoscopy.
I had no problem with my stool sample but still got a colonoscopy - probably because of my age, 55, so they wanted to rule out any nasties. Good luck and hope you get somewhere with it
This is obviously having a serious impact on your peace of mind. Please change your medic and see what happens. Try a glycerin suppository and see if there is any relief. I looked up the fodmap diet once only to find I’d been on it for years. It did little to help me but some folk swear by it. The thing that kept me healthy for seventeen months (a miracle) was kimchi and seaweed tablets. Stay on this forum. We want to help. And don’t be fobbed off by the new doctor! I know you can be insistent. You said you have done it before. Another good idea is to make friends with his or her secretary. Con amore Bx
Thanks, I'm really at my wit's end and just wanted to vent my frustrations. Here's hoping that my appointment with the NHS gastro goes well and they listen to me, but based on my experience so far I'm not holding my breath. It's so difficult, especially when it's just a phone call, to be heard and taken seriously.
I'm sorry that you are having to go through this. If you are already suffering, having doctors dismiss you just makes everything worse. As others have said, write everything down (symptoms, questions etc) and don't let the Gastro hang up until you feel that you have covered everything. If you are still not satisfied then think about getting a private consultation.
You mentioned that you felt a lumpy area? Maybe try and emphasise this during the call (not saying that this is anything to worry about, but brining this up might galvanise them into doing something).
This all could still just be IBS. I am afraid that it is used as something of a catchall term when doctors have ruled out everything else. But they need to actually do that before they write you off!
Thank you. Yes, I'm assuming that the lumpy area is my colon (not confirmed by a doctor) because I'm slim, but I can't be sure. I can't see what's going on inside and neither can they! When I press on the area, it sounds like lots of liquid squelching around in there (not pleasant!). Or it could be a build-up of gas mixing with the liquid. It certainly feels like a bubbling sensation. Only when I insisted on showing my GP a video of this strange symptom did he take me seriously, as he was stumped.
When they do your stool test they are looking for inflammation markers (calprotectin). It is used to decide whether someone needs to go for a colonoscopy or further tests. This decision is based on concrete scientific evidence that this marker is a very strong one as to whether further investigation is needed.
It is interesting that you have 'discomfort' rather than 'pain'. Many people with IBS suffer with extreme pain on a daily basis.
It is possible you may be suffering from a mild form of 'functional abdominal pain'. There is information about it here:
It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline, which is why your GP has prescribed it to you. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, but this can be helpful in people who are diarrhea dominant, which is not true in your case. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex probiotic have helped me with this intestinal pain.
It might be worth giving amitriptyline a go for a while or alternatively, since you are constipated you could ask for Linaclotide - this reduced my pain by 50%-60% - it calms intestinal nerves and is supposed to help with motility. It was when I introduced Alflorex probiotic on top of that, my pain reduced to zero. Note that many GPs haven't heard of Linaclotide since it is relatively new, but it is on their approved list of medicines.
It's certainly a discomfort - more like a bubbling sensation of trapped gas (which is emphasised when I press on the area and it sounds like lots of sloshing liquid). I had a FIT test that did come back in the very low range of positive but the doctor didn't seem concerned. I've only just started the amitryptiline but will continue on it for the time being. Interesting you said it affects the neurons - I've had chronic back pain for the last five years and the doctors have done nothing about that either. I see a private physio for this now, having gotten nowhere with the NHS, and my physio thinks that it could all potentially be related (possibly autoimmune-related?). It's finding the right people to get the tests though to confirm this.
Hi there if the meds your doctor prescribed you don’t work then I would keep pestering the doctor , ibs diagnosis made over the phone is a joke has your doctor even examined you ? Ibs diagnosis should be made when everything else has been ruled out regardless of age many young people have serious bowel disease . For your own mental health try and go private for a ct scan if nhs refuses , I think the backlog build up from the pandemic has caused massive problems with getting tests . I hope you get a diagnosis soon take care x
I have seen a doctor in person once during all of this, at my insistence. He did take the time to listen to me and could see how ill I looked. He did a brief examination of the abdomen, but couldn't feel anything. He weighed me and well and confirmed the weight loss - this prompted his urgent referral to gastro because all medications and diet changes had not worked. It's a difficult time for hospitals at the moment; it's worrying that so many diagnoses and treatments are being dismissed to try and catch up.
That’s good at least you’ve been examined and been referred the waiting lists for scans and procedures are very long . You know your own body and if you know there’s something wrong keep pushing until you get answers I wish you luck I’m behind you all the way ! X
Hi. Sorry to hear you are going through this. I am also having upper tummy problems and have lost a lot of weight. So I can relate to you. Been going on since end of September last year. Anyway back to you. Has any one said it could be diverticulitis? All the best. Sue
My doctor did try me on a round of antibiotics to see if it was diverticulitis. He said it was unlikely (given my age!) but to try anyway. The tablets did nothing and nothing further was mentioned. It's such a frustrating situation to be in when nothing seems to work.
Hi I ended up paying privately for a diagnosis as my symptoms came on during Covid - it's not as expensive as you may think. The procedures are but not the consultation. I also paid for a Gastroscopy - I had SIBO (small intestinal bacteria overgrowth). Antibiotics were given but I was 15 months poorly & lost 3 stone in weight before this happened!!!Also you need to find out why this is happening so it can be controlled or even eliminated. Good luck. xxx
If you go private, can they refer your tests back to the NHS? It seems to be the private tests/scans that are really expensive. I've heard of SIBO and asked my GP about it and he'd never heard of it. I've read that a lot of doctors don't believe it exists, but I certainly have wondered if I have it as I resonate with most of the symptoms. I don't know if they test for this on the NHS. I've seen a few companies online that offer breath testing kits.
My GP was sent copies of letters etc from the consultant. SIBO seems to be the effect of something else not being correct perhaps gut motility is slow or too fast but you need to get this diagnosed first - I've read up a lot & I'm no doctor but antibiotics have worked for me. After finishing antibiotics I started fasting between meals (4/5 hours) & taking digestive enzymes from Holland & Barrett plus oil of oregano after two of my meals each day. You need to be referred to a Gastroenterologist. Hope you get on ok. 😀
Oh poor you i have been really lucky with my gp I had every test done bloods and poo and a CT scan which showed i had a hernia and diverticulitis and a Fit test which showed a small amount of blood with in 2 weeks i was booked in for a colonoscopy and had 5 polps removed all benign. I am no waiting for a camera down my throat. So go back and push for colonoscopy regardless of your age.
I don't know if this helps but I was off work for 6 months with severe diarrhoea and pains in my arms and legs I wont go in to it all as its to long but I was instantly diagnosed with ibs after a short phone call with a specialist I had no test or anything. I didn't believe that was what I had so I queried it and got nowhere until I put in a official complaint with my doctors surgery and the hospital patient administrator within a few days of that I had an appointment for a colonoscopie which was done within 2 weeks that was clear then I had a cystoscopie and ct scans within 2 weeks of that 2 weeks ago i had a endoscopy which showed i had a stomach ulcer which is being treated but my doctor still thinks I have ibs.
Basically what I'm trying to say i really had to fight to get these appointments you have to be on to them all the time and make it an official complaint i even suggested id seek legal advice it worked for me
I agree with you if you don’t push they shove you under the carpet , I was a right pain in the arse ringing doctors surgery every day sometimes ending up in accident and emergency have not been examined by a single gp in 18 months , there’s no way they can diagnose intestinal issues via a phone call x
Hi WolfHallowJust be careful I was told by my GP in just a matter of fact attitude, you have IBS eat this certain kind of yogurt, that was it.
I had a hospital referral by a different GP and I was really tested well.
I had a scan first then was given Nuclear Med and told to come back in 3 hrs to be scanned again, the result was I have BAM Bile Acid Malsorbtion, I'd had diarrhea for nearly 3 years, everyday anything from 6-9 times daily it was shocking at times I never made it to the toilet and to get showered.
BAM is when your bowel makes to much bile, so it overflows and that surfaces as diarrhea, im on a tablet 3 daily forever, but they really have helped me, I dareny miss a day or take them to late in the day otherwise walla its back full force.
I also had a different scan to check the small bowel, it came back OK praise God.
It just goes to show how things can be misdiagnosed, i was blessed I got a referral and i got a proper diagnosis, dont give up.
Because your troubled with constipation and not diarrhea its probably not BAM but must be diagnosed for your peace of mind if nothing else.
Hello... I am new to the forum.... I too have been fobbed off by my doctor.... Started with pains in my left side last April/May, couldn’t sleep on either side, then the constipation started, doctors did bloods and came back with high cholesterol, told to take ibuprofen which I think affected myStomach as I ended up in A&E, they gave me some reflux tablets.. and arrange a camera to look at my stomach.. then I was discharged nothing wrong, I gave it a couple of weeks... in between I had increased my fibre also having the camera down my throat and air pushed through seem to alleviate my symptoms... however not for long and they started again, I ended up paying for a ultrasound privately £245 and after all that it cannot see the bowel.. again after another consultation with the doctor he arranged for a stool sample and bloods plus a ct scan again all clear... they told me to cut back on fibre.. which makes me constipated and also I linked my symptoms to being worse during periods of homeschooling.. Anyway the past week I still have the constipation, and a constant pain in my side and up around the side of my rib.... this is whilst waiting for the doctor to reluctantly order a colonoscopy which she said I don’t need... have not been prescribed anything, or given any advice at all, i find buscopan doesn’t help at all.. and have had to ask my mum for some co codamol for the pain.. I received a letter the other week for said colonoscopy however when I called last week they said they will make a decision to see if I need one and to call back in a week.....I certainly resonate with your feeling of being fobbed off...
(I have never seen a doctor face
To face and never speak to the same one, the only time I felt listened to was at a walk in centre who did all simple test and felt my stomach and he said about increasing water intake more than what my own doctor advised )
Hi all, just thought I'd send a quick update after my telephone consultation with the gastroenterologist. I had prepared a timeline of my symptoms and all of the remedies I have tried so far. This was a really helpful tip and the consultant listened to me! I told him my concerns and how I feel like I have been fobbed off time and time again. I also explained how my gynaecological consultation was on hold because we were waiting for further tests from gastroenterology. He has recommended an endoscopy of the lower bowel and possibly a scan of the whole abdominal area so we can rule out any bowel diseases. Although I've not received an appointment for any of these procedures, I'm relieved that I'm finally be listened to and taken seriously. It's a step in the right direction and I will be pushing for an appointment if I don't hear anything within a couple of weeks. Thank you for the helpful tips and words of encouragement so far!
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Iin so much pain its unbelievable!my doctor diagnosed me with ibs about 2 years ago but my pain starts when I've been the toilet
Maybe a rant/seeing if anyone has gone through the same 
Abdominal pain - IBS?
IBS please help me!!!
Has anyone had success with being put on a low dose anti depressant for their IBS?
