I'm a 27-year-old otherwise healthy female from the UK and I've been unwell since August 2020. My main symptom is the feeling of trapped gas in the lower abdomen, more towards the pelvic area and next to the hip bone. The pain is worse on the left but sometimes spreads to the right. When I massage the area I hear gurgling, like liquid sloshing around. On the left, I can also feel what I think might be my colon - a long, sausage-like shape which is tender when I apply quite a bit of pressure. I don't know if it's normal to feel the colon (or even if it is the colon - I've not been examined by a doctor because of Covid) or if it's inflamed.
What is strange is that the pain is far worse when I lay down, so at night time it is very uncomfortable and I've been getting very little sleep. It just feels like the gas is pooling in the lower abdomen and I can't do anything to release it. Painkillers don't take the pain away as it's more the discomfort and sensation. Over the last couple of weeks, the pain has been increasingly getting worse throughout the day, as well as night.
All my doctor has done so far is blood tests. I'm not sure what for but I know it included Celiac and CA125 (both negative). I also had a pelvic ultrasound in December to rule out a gynaecological cause and the sonographer noted follicles on my ovaries, possibly PCOS. This diagnosis is pending the gynaecologist reviewing the scan and deciding whether I need more tests to confirm. I asked my GP about this and he thinks that even if it is PCOS, it wouldn't be causing me the intestinal pain I'm experiencing. He also said that whilst I'm under the gynaecological referral, he can't refer me to a gastroenterologist because they would unlikely accept his referral because the two services often overlap. So, until I hear back from the gynaecologist one way or the other, I can't get a referral. Given the current situation, even if I was to get a referral I'd be waiting months. I can't face that long in this much pain and discomfort.
My doctor has been pretty dismissive and said it's IBS, and has prescribed peppermint capsules and now Mebeverine, which have not made a difference and I've been taking them for four weeks now. I was put on a course of Metronidazole antibiotics in case it was an infection, with no improvement. I'd also like to emphasise that I've not had any bowel changes and my symptoms are not relieved when I have a bowel movement. This makes me find it hard to believe that it is IBS. I can't think of anything that could have brought any of these symptoms on and I've never had any problems before. The doctor I spoke to last time said there weren't any more tests to be done, such as stool, endoscopy or CT scans, because I don't have bowel changes and I'm young. I asked this because it even says on the NHS website that IBS is a diagnosis of exclusion, but things like IBD, diverticulitis etc. have not been excluded because I've been refused testing. It seems that because of my age and lack of bowel changes, I'm not likely to get any further tests because statistically, I'm unlikely to have anything 'serious'.
My diet has not changed and has been consistent for years. I've tried cutting out lactose, with no improvement, for a couple of weeks. I'm now on week 4 of low FODMAP, and I've been noting down everything I'm eating. I've not noticed any improvements or trigger foods, so I'm not sure it's diet-related. The diet is just making me more miserable and drained. I've tried Fybogel sachets to try and increase my fibre intake. Although it made me slightly more regular, it didn't bring me any relief of symptoms.
I'm desperate for any insight into this as I am frustrated about the lack of help from my doctor. I'm exhausted from lack of sleep (from pain) and I'm also losing weight (which is not good as I'm already very slim). I'm at a loss of what to do and getting desperate. Are there more tests I should insist upon? Are there supplements/herbal tablets I could try? Are there any other foods I should try and avoid? I have another phone appointment on 7th January with my GP and would like to be prepared to try and advocate some investigations without sounding like I've been Googling all of my symptoms.
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WolfHallow
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This shocks me. I am on this site to try and help as while I am not a Dr i have seen my share of them to know that your problems, like mine are real. For starters you need to find a Dr who has an empathy for what you are going through, if its any comfort I am going through the same thing. I actually had to force my Drs to do the tests required, and even ended up in hospital when they dismissed claims, a long story. Heres what you could be looking at testing wise, and endoscopy, colonoscopy and inflammation markers in bloods to try and rule out the IBD's. They will also hopefully rule out things like gastric Ulcers, Gastritis, polyps etc etc. They can test stools for malabsorbtion etc. Only after all that the IBS definition based on certain parameters. Heres the thing, I dont know how old you are, but you must know that whatever is going on be it leaky Gut, IBS, IBD whatever, stress will play its part, given the more you worry (and I get why you do) the more the mind will upset your tummy. You get caught in a vicious circle. IBS can by the way cause constant stomach pain as i have been suffering since June with constant pain, and again not really related to food intake or BM ( Toilet stuff) So please try and relax a bit and set things in motion so that you can tick things off that might be deemed more serious. You could even set about looking at labs that might test your gut microbes which could be offline and require probiotics etc. Please feel free to ask me anything, Im not a Dr of physical health but a mental Health professional. I have also a lot of experience in this area. You are not alone. I am actually going to post now and see if other people have had constant pain not related to BMs or what they have eaten, just to see what others think. Good luck and feel free to ask away... You will be well again, you need to believe that..
I'm 27, so still young which is why I think I'm not been taken seriously. The problem is I am under NHS care and every appointment seems to be with a different doctor. I do have one doctor who seems the most on the ball and open to my suggestions, and he is trying to advocate for referrals etc. but said that because gastro/gynae overlap, he won't be able to gain a referral to both. He said himself he doesn't know what it is, so just treat it as IBS for now.
I'll try and ask for further tests but again, but when I've asked before I've been invalidated by some doctors because of my age and of course the immense strain that the NHS is currently under. I had to wait two months for an 'urgent' ultrasound scan (should have been two weeks) so even if I do get a referral, the waiting time will be months.
I find it disheartening that doctors can just dismiss it as IBS when I'm not having any bowel-related changes. No constipation/diarrhoea surely means it's an incorrect and lazy diagnosis on my doctor's part? I am trying not to worry but am desperate for a doctor who is willing, and has the time to, help me find a cause. I've even been considering a private consultation but I just can't afford the fees and subsequent tests that they may require. I was looking into SIBO as a possible cause as well but when I mentioned this to the GP, they had never heard of it. I have a history of thrush infections so thought maybe this could be a trigger and spread to an overgrowth of candida/bacteria in the intestine? But again, it's hard to find an NHS doctor who believes this exists/has knowledge of the condition.
I do have a history of anxiety and depression and similar to this, doctors were only willing to treat the symptoms and not the cause. I was given tablets for years without any follow-up and had to seek private therapy myself.
I feel for you. Have you had a stool sample to test for calprotectin the higher the level it could be IBD Have you had a scan for gallstones or endoscopy for a possible hiatus hernia.
My problems have been ongoing for 5 years, initially diagnosing IBS when my colonoscopy came back clear.
My inflammation markers our high so I am been tested for ulcerated colitis or Crohn’s
You should insist your Gp does tests, you know your own body
Stool sample and endoscopy have so far been refused by my doctor because of insufficient evidence to suggest it is necessary. I am frustrated by this and will try and advocate again. The problem is I speak to a different doctor each time and they all say different things.
I think it would have to be a gastroenterologist who would have to request scans and I can't even get a referral to them. The NHS waiting times are so long as well that I understand they have to prioritise patients, but I'm just worried that things will get worse for me. My doctor only treats the symptoms and doesn't have the resource to find the cause.
HiYou’ve had blood tests CA125
But no stool tests??
Your were put on a course of metronidazole, what was this strength and how long for? Also we’re you given amoxicillin to take with this?? Are you on or have you been on ppi like omeprozole? Are you getting symptoms like, gas pockets, tummy feels like it’s rolling, bloating, gas, wind, gripping feeling, bloating reflux, anxiety.
Do any of these seem to progress into the evening and are better in the mornings?
I did ask for a stool test and the doctor I spoke to at the time said they can't do a test unless I have diarrhoea. I don't know if that's true but it seemed odd to me.
I think I was on the Metronidazole for 7 - 10 days, I can't remember the strength. This was about 6 weeks ago. I wasn't given anything else.
Yes, it does feel like gas/liquid in the intestine, particularly lower left. When I massage the area to try and move the gas/liquid along it makes a sound like gurgling/groaning/liquid sloshing around. It feels like there's something there that's causing pressure, like a knotted, gripping or cramping feeling. It's significantly worse when I lay down, so any time I'm horizontal. In fact, sometimes I have minimal discomfort in the day but as soon as I lay down the symptoms begin. I wake up with the pain as well but it does seem to ease when I get up and move around a bit.
Yer please look up h pylori. Plenty on YouTube. I forgot to mention that it can cause weight loss. Your probably feeling your colon if your underweight. 50 percent of us here have this horrible bug in our belly’s. But most people can deal with it no symptoms. I had all the symptoms tho.You can get a stool test or a breath test. Blood tests are also done but cannot definitely test if it’s still present. I don’t know why your were put on just metronidazole alone. This is a triple therapy course of two antibiotics and a ppi to lower the stomach acids. You would normally continue with the omeprozole for two months and then re test for the bug!
Symptoms can remain for many months after eradication
Interesting. Just researching it now and it says H Pylori presents as upper abdominal pain, so this doesn't fit my symptoms. Is it possible that it can present as lower abdominal pain as well?
The antibiotics were 'just in case' it was diverticulitis. My doctor was running out of options at this point. I've not been tested for the condition but the easiest thing for him was to just prescribe the antibiotics.
It’s unlikely you have DV this would normally present pain and some blood in the stool.This is common as you get older. So the say that 60 percent over 60, 70 percent over 70 etc etc. Your probably to young for that. Colitis would also be mucus and blood.
Pylori can effect the upper, lower and bowels. It’s mainly detected in the lower duodenum. It lives in the mucous lining of the gut and is very resistant to drugs so a low dose of one antibiotic won’t shift it. If you have it you will probably need a different antibiotic ( not metronidazole) and amoxicillin with the omeprozole. For a week to ten days two antibiotics 3 times a day on a high dose like 400 mg.
I had it all lower down belly symptoms like you.
You can buy the test kits from Amazon for stool and blood but I’m not sure how reliable they are. They are cheap tho and next day. If you going to give it a go (no harm in trying it might surprise your doc) go for two kits, one blood and one stool to give the best results.
I suffered a year with my doctors here in Colchester fobbing my off with buscopan
Oh I forgot to say this bug can cause anxiety as it did with me because it lowers the serotonin in your body.It’s a very clever but common bug. I’m not surprised your doctors haven’t done the stool or breath/ blood test
For this. Over a year for me with two old doctors before the third younger doctor decided to test- and found it
I have had an at-home breath test on prescription a few weeks ago actually and I think it was testing for this. I'm still waiting for the results of this so will chase this week when I speak to the GP. Thanks for the insight.
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. 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. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex have helped me with this intestinal pain.
It is interesting that are experiencing the pain more at night since that is what happened to me. It is when you bowels are at their most active preparing for a BM in the morning, so it stands to reason the pain could happen more then.
It would also be good to get the results of your gynaecological scan though.
Hi there I didn’t know bowels were more active at night ! That’s why I can’t sleep then ! Gases building up , trapped wind , pressure in back passage that’s really interesting x
Yes indeed. Different parts of your body have their own internal 'clock' i.e. certain times of day when they go into 'maintenance mode'.
Hi there I do feel for you I also get pain worse at night trapped wind in colon that won’t come out and pain , but once I’m asleep it’s fine , I think it’s the gases. Building up in the day ! Telling someone they have ibs and just letting you get on with it is crazy especially as your vowel movements have not changed x
I'm so frustrated but I have a phone appointment with my GP this week. Hopefully something will come of it but I don't have too much faith. It's stopping me from sleeping which is making me feel worse during the day.
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