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Avatar universal

Abdominal swelling, feeling of fullness, making life unbearable

I don't know where to start really.  I haven't felt well for many years.  I am in my early 60s.  I have had IBS, fibro, ME, migraine, depression, skin allergies, upper UTIs, hiatus hernia, an eye problem which required an op - you name it!  I have done all the right things - exercised, never smoked, barely ever drank alcohol, tried marijuana twice by eating it, that's it.

Many years ago, I was diagnosed with IBS, based on symptoms only.  More recently, due to continued pain down my right hand side - grinding, nagging pain that was extremely hard to live with - I had various gastro tests.  I had endoscopy, colonoscopy, blood tests, ultra sound scan.  Still no explanation other than 'IBS'.

Some years later, the discomfort has moved from down the lower right side of my abdomen to being a constant swollen feeling under my ribs, across the top of my abdomen, in the middle of my abdomen below the breast bone, and a bruised discomfort feeling in the abdomen below the right-hand side ribs.  Again, I had tests and again was told IBS. I also had an MRI scan, to check the liver I think.  The doctor says the symptoms are likely due to constipation.  I never had constipation before this.  It is like this even if I don't eat.

The swelling is there all the time now and I feel like I need to avoid eating but I get hungry and then succumb.
Sometimes it feels as if the swelling is affecting my lungs and as if they have less space.  I am very uncomfortable and find it hard to bend down.  I am much more swollen than I ever was when pregnant.  If I have to do anything physical, like housework involving bending down, I come out in a cold sweat due to the discomfort.  On the right-hand side below my ribs, I feel as if something gets trapped when I bend down and it leaves me feeling bruised and battered.

I despair really.  I cannot keep bothering my doctor with these symptoms.  They have done general blood tests for all the usual things and I think one of the scans covered the liver.  What else can be done?  It is getting to the point where I feel my abdomen is so swollen (and it is in reality sticking out way beyond my breasts which were never meagre) and that somehow the swelling itself is causing my body to retain fluid all over.  At times, I feel like I'm coming out in a cold sweat due to the discomfort of carrying all this swelling around.

I cannot lead a normal life, do my housework.  I feel embarrassed about going out due to the swelling.  I have gained weight due to lack of exercise because it is so uncomfortable/pretty impossible to exercise like this and I am sure medical people will just assume my problem is now weight gain.  It has got to the point where I feel the only way out is suicide.  I cannot live like this for ever and it is no life.  The symptoms do not appear to be of concern to anyone but me.

I have had a problem with uterine hyperplasia which is being treated with hormones (successfully, according to the hospital) so I have no reason to think they are not correct.  I have had biopsies to monitor this and have had ultra sound scans.

So, is there anything else that might provide an answer to this?  I have sent off for a private allergy test as a last resort (an IgE test).  If this does not explain anything, I am left with deciding whether I want to live like this or not.  I think not.

I appreciate this is a lot to read through so thank you for your patience.  I don't want to be a nuisance to doctors, I just want to be well.  I have been in regular pain or discomfort for about 40 years now, initially due to IBS and migraine but now due to this swelling.  Honestly, I have had enough.  The swelling is even interfering with me putting my affairs in order as I cannot clear out my house.  I don't want to leave my family with accumulated chaos and I really do think suicide is the only way out.  Treatment for constipation has not worked; it makes me 'go' but the swelling is still there.
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Avatar universal
mybjers 1 min
I’m not the author of this post, I have responded to try to support Shadowmed.
Sorry for the miscommunication , I was attempting to explain that I feel miserable if my TSH is above 1.3, which is “normal”  My last 4 TSH results were 91.5, 9.6, 23.1, 2.77.  I gather from your post you know TSH test alone is sort of pointless,  doctors easily dismiss patients with a “normal” TSH
I have been diagnosed with Hashimotos,, not Shadowmed. I have had   T4,  freeT4, T3, free T3, and TPO, which is the only way to confirm Hashimotos, at least that’s my understanding..
Helpful - 1
It does seem that there may have been a misunderstanding, but don’t let it bother you.  You’ve had the entire thyroid panel (TSH, Free T3 and Free T4), so you’re good and you haven’t done anything wrong..  

Actually, TPO isn’t the only way to confirm Hashimotos.  TPO is actually an enzyme so you need TPO antibody test (TPOab) since it’s the antibodies that attack TPO.  There is another antibody test that can also confirm Hashimoto’s.  That test is Thyroglobulin Antibodies (TgAb).  Often, both TPOab and TgAb are needed because if one is negative, the other could be positive.   In addition to the antibody test, Hashimoto’s can also be diagnosed via ultrasound , looking at thyroid characteristics.  
Thank you for the information, I don’t know why thyroid disorders are so over overlooked.
Amazing, isn’t it, considering the effect the thyroid gland has on the entire body…
649848 tn?1534633700
I understand your feelings of not wanting more tests, but when the pain/discomfort makes you decide to pursue the issue again, you might talk to your doctor about H. Pylori.  Most of us have H. Pylori and it doesn’t cause any issues; however, if we get an overgrowth, it can cause a lot of uncomfortable symptoms, including abdominal pain, feeling full quickly, feeling bloated.  I’ve had H. Pylori twice and I think the bloating is the worst.  H. Pylori is treated with dual antibiotics for 2 weeks.  There are a couple of different tests you can do for H. Pylori.  One is the stool test, another is a breath test and the last is a biopsy, taken during endoscopy.  

The first time I had H. Pylori, the stool sample came back negative, but my gastroenterologist did a biopsy when he did my endoscopy and the biopsy came back positive.  About a year later, I had the same symptoms and a stool sample came back positive.   I suspect that I didn’t completely get rid of the H. Pylori the first time I was treated - not even sure I got rid of it the second time as I often have those same symptoms.  

Another thing I have to ask:  Has anyone taken a good look at your gall bladder?  I had severe pains for close to 20 yrs - almost every night.  It felt like I had a big gas bubble or something.  It was extremely painful, but the pain would eventually work it’s way down and go away, only to come back the next day.  It was by accident that I was in the doctor’s office for a physical and the doctor palpated my abdomen and almost brought me off the table when she hit the spot under my right rib cage.  She sent me for an ultrasound and it turned out that I had a large gallstone that periodically blocked the main bile duct causing the severe pain.   I had my gall bladder removed within a couple of weeks from that exam and have never had that pain again!!

All of that said, I had a lot of those same symptoms prior to being diagnosed with hypothyroidism and a lot of them went away once my thyroid hormones were adequate.  Doctors don’t care if your levels are low in the range, as long as they’re “in the range” but the fact is, we can have thyroid symptoms anytime our levels aren’t “optimal” for us… We’re all individual and many/most need actual hormone levels higher than the bottom of the reference ranges.   If you care to, you can visit the Thyroid Disorders Community to learn more.  
Helpful - 1
Thank you Barb, I really appreciate your response and comments.  The doctors have done all the tests and cannot find an explanation other than 'IBS'.  I can't keep going back to them.  They did test for H. Pylori and apparently I didn't have that.  This was done by stool sample and biopsy (I understand).

They did look at gallbladder and at kidney but still no explanation.  

With thyroid in the normal range, there is nothing I can do.

I can't keep bothering people when there is a pandemic - or any other time for that matter if they say they cannot find a problem.  I know they did find some diverticulitis but I wouldn't have thought it would account for the many and diverse symptoms.

This is why I feel so hopeless.  My only option seems to be to take antidepressants to dull the unpleasant sensations.  As these cause constipation too, it is reducing sensitivity but causing another issue.
I’m sorry, I’m quite distrustful of doctors because of the many mistakes they’ve made with my diagnoses (or lack of) over the years.   Do you have any of the reports for tests that were (supposedly) done?  I make sure I get copies of all labs and imaging reports so if need be, I can seek another opinion and because I do a lot of research.

There are things that can malfunction in the gall bladder, even if you don’t have stones, like I did.   But, if they’ve looked at gall bladder and kidneys, what about adrenals?  

Actually, you can keep bothering people if you are in pain.  Your doctor’s “job” is to keep you healthy and feeling as well as possible.

That said, even your Hiatal Hernia could be causing the pain.  IMO, you need to keep asking about it.  Antidepressants are wonderful (sometimes), when they’re needed, but totally the wrong choice when there’s something else going on.   It’s totally unfortunate that we’re in a pandemic, but we can’t let our health issues totally go by the wayside either because more of us will end up sick from things we could have resolved.  
I agree with Barb, first step get copies of everything. If you have the means to get some lab work on your own, do it. I know doctors may not “accept” it, but if anything stands out, you can ask your doctor to run it. I have Hashimotos, and have only felt “normal” for 6 months, when my TSH was 0.5.  My levels jump all over the place, Barb is absolutely correct that if it’s in the normal range, doctors dismiss your pain. Levels can all be normal and still suffer from thyroid issues. Along with pituitary and adrenal fatigue. A lot of your symptoms fall under these. I constantly feel like I’m suffocating from the inside, and still can’t have my head lower than my heart, I can feel the fluid build up. I have “weighed”20 pounds more in less than 36 hours.. every thing was backed up. Thyroid imbalances also presents as depression.  
Sorry for rambling.
I have never posted any of this, I did this time in hopes it will reach you and help you to not give up.
Not to say other tests weren't done, if you've been diagnosed with Hashimoto's you must have had them, but Tsh doesn't really test your thyroid function.  Anyone who really needs to get to the bottom of that needs to get their T3 and T4 checked.  Also, it's not true that all antidepressants cause constipation, in fact they are just as likely to cause the opposite and most people don't get that problem.  The older antidepressant category the tricyclics were notorious for causing constipation, but the newer SSRIs and such usually don't.  They can, but don't often.  I've taken a large number of them and none of them other than tricyclics caused constipation.  However, they can cause all manner of digestive problems.  I do want to say, most docs aren't really all that good at their jobs, which makes sense as most of us have jobs we're not that great at.  We don't live in a world where we can keep trying things until we find what we're not only good at but like to do.  Most docs become docs for the money and thy stay docs for the money as well.  They are also very busy, and it's beyond obvious that medicine is hard to do and requires way more time than any doc has to devote to it unless they really don't care at all about money.  Insurance companies, including socialized insurance, also put many limits on the time a doc can spend with a patient.  The solution is to see better docs at institutions that sell the fact they do spend more time and work in teams, such as Mayo Clinic, or see docs who don't take insurance.  But of course, that can end up costing more than most of us have.  I will say, IBS isn't a thing, and h pylori is almost never a thing either unless you have an ulcer and it's really eating away at you.  As Barb said, we all have some in our systems and just because it's found doesn't mean it still isn't what you're eating or when you're eating it.  The antibiotics to treat it further weaken the immune system and the digestive system, further causing more of the problems you go to get treatment for.  This stuff is very complicated, and my own opinion is, we'd be better served if our docs worked with natural practitioners and nutritionists instead of competing against one another so they could try dietary and lifestyle changes and also see if maybe some mental issues are involved before resorting to treatments that can make what you're complaining about worse.  But life is hard, folks.  My best friend is suffering from a horrible disease called recurring pancreatitis even though he has none of the usual reasons people get it.  He also had gall stones, but you don't generally need to get your gall bladder taken out for that.  There are other ways to break up the stones.  Still, he was told to get his out during a pancreatitis bout, despite the emergency room doc saying no, that's not only unnecessary but will cause further problems.  He was in pain, did what his surgeon said, and got it out and it helped not at all because it wasn't necessary or a problem, it only made his recovery from the pancreas surgery harder, and now he has to deal with the digestive problems that can be caused by not having a gall bladder.  He certainly wishes it was still there.  That's medicine for you.  When it works, it's a miracle, and when it doesn't, it's a curse.  Peace.
I think I miscommunicated, I have been diagnosed with Hashimotos,, not Shadowmed. I have had   T4,  freeT4, T3,
I’m not the author of this post, I have responded to try to support Shadowmed.
Sorry for the miscommunication , I was attempting to explain that I feel miserable if my TSH is above 1.3, which is “normal”  My last 4 TSH results were 91.5, 9.6, 23.1, 2.77.  I gather from your post you know TSH test alone is sort of pointless,  doctors easily dismiss patients with a “normal” TSH
I have been diagnosed with Hashimotos,, not Shadowmed. I have had   T4,  freeT4, T3, free T3, and TPO, which is the only way to confirm Hashimotos, at least that’s my understanding..
Thank you for your comments Barb, they are helpful.  I think it's a good idea to get copies of test results.  It is not customary for the NHS in the UK to give patients copies of anything so one has to ask for these.
If you don’t, typically, ask for these, you should do so, so you can check them all out.  I’ve found things in my tests that were significant, but the doctor(s) didn’t ever mention them at the time.   If I get my reports immediately, I can question the doctor about things that don’t look right.   When I do this, I almost always get an explanation - even if it’s not the one I’m looking for!!

It’s important to understand that we have to advocate for ourselves, because most of us have no one else to do it for us and the doctors (most) are not working for our best interests; they’re working for their own interests.  
Avatar universal
Have you had any more tests?
Helpful - 1
Kind of you to ask but no, I'm just not bothering any more.  The doctors are too busy and they are not interested unless you are dying on their doorstep
Avatar universal
Very kind of you to ask.  I'm doing better at the moment, thanks, I have been taking antihistamines daily.  I found that they were helping reduce the swelling though I have been tested for allergies in the past and nothing obvious was found.  The antihistamines still seem to be making a big difference, which seemed odd, and then I came across histamine sensitivity.  This seems very close to what I have been dealing with.  Following a low-histamine diet seems very complicated so I'll stick to the antihistamines for the moment.

Interestingly, very shortly after I came to the conclusion antihistamines were helping me, this article was published about depression and histamine.  I was quite astonished at the coincidence and it makes for interesting reading, though I felt sorry for the mice!


Helpful - 0
Avatar universal
How are you doing Shadowmed
Helpful - 0
Avatar universal
Thank you for your reply mybjers.  Yes, they have tested the usual thyroid panel, not just TSH.  Apparently, it's not a thyroid problem.
Helpful - 0
Possibly parasite related.. My sister has Lyme and suffers so much, so many symptoms
Thanks for the suggestion.  I am hoping to have a Lyme test.
Good luck, let us know any outcome
How are you feeling? Any progress on a diagnosis
Avatar universal
Have they tested your thyroid, not just a TSH test. Try to push for T4,T3,free T4,reverseT4,TPO
Helpful - 0
Avatar universal
You may feel this answer is simplistic (as I did when my doctor suggested it to me.) Try Gasex pills (simethicone) for the swelling and uncomfortable feeling, and try it for awhile.  You can get it over the counter as well as prescribed.  I usually use it when eating wheat as I have a very slight allergy to wheat, but you may find using for every meal will help.  It has really helped me.  I have never been a very gassy person (from either end) however it makes me burp (and fart) more, but relieves the pressure.  Also as someone else suggested it may be your diet.  I know when I don't feel well I reach for stuff I really should not be eating because it is easy.  Look into allergies, and diet options, not necessarily dieting options, but specialized diet options; like dairy free or gluten free, no msg, whatever, try all organic, etc.. and do it for a long while like 6 months it may take some time to adjust your poor system.

Next time you go to your doctor hand him a written list (it's faster for him to read it) of your symptoms maybe it will "click" for him, that this, and this, and this, all mean this.  Too bad if they only want one symptom you will not get an answer that way.
Helpful - 0
Thank you for your kind reply.  I have tried simethicone in the past but not recently.  I will ask the doctor about it when I next speak to them.  Honestly, I feel very hopeless about seeing doctors because so many things have failed to help.  Some have helped though, like Lansoprasole for the Hiatus Hernia, so I know things can work if the cause is identified.

I am revisiting the diet thing again.  I went through a phase of doing this when I had the original IBS (i.e. before it moved upwards) and tried exclusion diets.  Nothing seemed to make a difference.  It may be that something has changed though which is one reason I am trying the allergy testing.

I do appreciate all suggestions.  I feel I have spent too much of my life in pain or feeling ill and it could have been so different.
I may have missed you had hiatus hernia (and whether there is erosion or not) I have a severe erosion in my esophagus and Sucralfate (its for gastric ulcers) is healing that plus I am eating in my recliner or going to my recliner shortly after eating, as I am not supposed to lie down for 3 hours after eating; that was if I want to sleep after eating I am upright.  I sometimes even have a late night snack and just sleep in my chair for 3 hours then go to bed.  I have seen some peoples doctors tell them to take sucralfate after eating for esophageal ulcers (it is usually prescribed before eating from 20-60 mins before eating.)  I have the pills as they are much cheaper than the liquid, but have read some people really prefer the liquid.  I started dissolving a tablet in a 4-6 oz glass of water; which happens very quickly; I feel I can take it more immediately.  I also take one during the night (if I wake up) that way the medicine gets to the eroded tissue with no (pesky) stomach contents to interfere with while I am lying.  

Also my dad's doctor once told him he had hiatus hernia.  What he did after he ate was to jump off of  a step (inside or outside the house) maybe even a couple of times so the weight of his food and water would relocate his stomach back down where it belongs and not protruding out the base of the esophagus.

I have also read of a surgical procedure where they place a ring of tiny magnets around the esophagus at the opening of the stomach to keep it closed more like it was before you started having troubles.  I can't remember if this is an outdated procedure or not.
That's very interesting, thank you.
It's me again;  I'm sure you have thought of this, but I had cereal with milk on it about an hour ago and just noticed my stomach is HUGE, no uncomfortable feelings or other noticeable problems, but I am going to pay attention if it does this with cheese and yogurt (although I don't think so.)  Have you noticed a lactose problem; maybe try avoiding it.
I spoke too soon; a pretty uncomfortable feeling in my abdomen and belching has been happening.
Avatar universal
Too much to unpack here.  You are quite depressed, and I get that.  I too suffer from a host of problems that trace their origins to medication, and I will apparently never get better but always get worse.  So yeah, I get it.  But I have a host of problems caused by something known that has no known treatment, whereas you have something that hasn't yet been diagnosed so you don't really know that it can't be fixed.  Now here's the thing about IBS -- it isn't really a thing.  It's a name used for pain in the digestive system but without knowing why it's there it's a pretty useless designation.  The cause can be a lot of different things, but if they've all be ruled out, it's your diet.  I'm also confused because you seem to say you're not constipated but are being treated for constipation, so I don't really get that.  Constipation is either caused by medication or again, your diet if no disease state has been found.  What people with the means and the ability to travel do when they have a problem their docs can't find is to go to a place where they have better docs, such as Johns Hopkins or the Mayo Clinic, just to name two most have heard of, but if you can afford to do that and are able to travel, when your current docs can't find the problem, find better docs.  I really don't know why you've had so many problems, but I do know a lot of them are associated with anxiety and depression.  Don't know if that's a factor with you, but digestive problems and migraines and things like that are often caused by that.  Doesn't mean it's so in your case, but it is a possibility.  I doubt anyone can help you on the internet because you have so many different things going on and if you have that big a swelling in your abdomen and you don't just feel like you have one and your docs aren't finding anything, that sounds odd.  So again, that means better docs.  I hope you keep looking for the fix or at least a diagnosis before you resort to drastic action.  Peace.
Helpful - 0
Thank you very much for your comment.  I do realise that I am depressed but have had too many problems with antidepressants.  

I am aware that IBS is an umbrella term for abdominal pain with no known cause.  It is frustrating.

I am in the UK so have been going through the NHS thus far.  The allergy test I have arranged is private.  What I don't want to do, of course, is to have more of the same tests which provide no explanation.

Yes, a lot of the problems I have had are known to be associated with anxiety and depression but then treating depression with antidepressants has never relieved or resolved these problems.  I feel now it is more that the physical issues are a major part of the depression.

Although I have many things going on, the one that is bothering me the most at the moment is the abdominal one.  I was treated for constipation because doctors think that must be what is causing the swelling as part of IBS.  However, I have not had constipation before.  I was getting it when taking Venlafaxine, an antidepressant known to cause constipation.  This was one reason I was being treated for it.  However, the treatment never stopped the swelling problem and the constipation was not there when I stopped taking Venlafaxine.

I know it's all horribly complicated, which is why I despair.  We get 10 minutes with our local doctor and most of that time is spent with them trying to look at notes on their computer.  We are only supposed to bring them one symptom.  This is obviously crazy as it takes forever to get help for multiple problems and it means any connected problems are not linked during a consultation.  This is why I've been ill for so many years.  The system really needs reform.

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