I need help. Please. I’m desperate. Severely bloated stomach, back pain, can’t eat...

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I’m hoping someone can help me. It seems no one in real life can and I don’t know what else to do, having just spent £250 on a private consultation and got nowhere.

A month ago my belly started bloating. It popped out so I now look like I’m 6-7months pregnant. This has not changed. In addition to this, I have severe lower back pain, a constant need to pee but not much coming out and loss of appetite.

Checked over at a&e (sent by dr). Definitely not fluid. In fact, I’d lost weight. Bloods ordered and scan arranged. Bloods came back with slightly high ca-125 hormone but scan was clear (apart from start of kidney deposits but nothing significant). I would be referred to consultant gynaecologist but this would take 12 weeks.

In the interim, I can’t sleep because my back hurts so much, I’m barely eating because I cant stomach it and I’m having to take time of work because I’m so exhausted.

I decided to book a private consultant appointment and I went today. He’s basically said it’s unexplained fluid retention and I need to lose weight.
I am, and always have been, a size 10-12. I weigh 9 stone 4 and am five feet three. I currently look like a whale but if you weigh me, I’m actually normal weight in my weight bracket for my height.i am not, nor have I ever been, obese or diabetic. He said the ca-125 was fine for my age (35), I have a sensitive uterus (it was sore when he did an internal exam) and maybe I have IBS. Fucking ibs? Ive taken the ant spasm meds from the dr (buscopan and the next one up but name escapes me) and they’ve done fuck all, I’ve to pay for an internal scan on top of this, just to rule stuff out, but consultant said very unlikely to be anything.

I can’t live like this. I can’t. I can’t parent the way I need to because I’m so tired and huge. I can’t work properly because by the end of the day I’m on my knees with tiredness. I can’t eat or drink anything really because I just feel crap after it. Nothing fits and people give up their seats on public transport for me.

Please, someone has to have an idea of what this could be? I’m sitting here in tears because no one will help me. I don’t know what else to do.

Has anyone experience of this? Where do I go next.

I don't want to freak you out but:
Please go back to the Dr and ask them to rule out Ovarian cancer.

Increased CA125 IS a marker for Ovarian cancer.

I only know this from reading a MN thread on this recently.

What are the symptoms of ovarian cancer?
Common symptoms include
• Increase in tummy size
• Bloating
•Abdominal/back/pelvic pain
•Needing to pee more often or urgently
•Bowel changes
•Fatigue

I agree. Not to scare you but this would be my first concern too. Is there another explanation for your high CA125? Mine was borderline recently but caused by hormones released from ovarian cysts...

They’ve apparently ruled out ovarian cancer because the pelvic ultrasound was clear and the CA125 was ok. The Ca125 would have to be much higher and the ultrasound showing something before they would consider exploratory surgery.

I feel like I’m losing my mind and going round in infinite circles.

I have regular ultrasounds & CA125 as I'm being monitored following a borderline ovarian cancer some years ago.
Neither test is a definitive. CA125 is quite unreliable. It can be raised due to endometriosis/ inflammation. It can be within normal limits if there is a problem.
My oncologist has told me there is no definite diagnostic tool for ovarian cancer. Tumors are not always visible. It is simply a screening.
Is the bloating constant? I would return to your GP. Is an MRI possible?
Wishing you all the very best.

Are you constipated? I am very familiar with the symptoms you describe, and have recently had ovarian investigations too - but in my case it is all apparently due to adhesive disease causing a partial bowel obstruction. Have you ever had abdominal or pelvic surgery?

I think you should have a MRI.
Have you been tested for coeliac disease?
Go back to your GP again. This sounds awful.

Have tried taking Nexium for a while and see if that helps? If you had a stomach acid problem then you can feel very bloated and get stomach and back pain. Just a thought.
I weigh 9st 4lb, am 5ft 4 but take a size 14 because all my extra weight is around my middle.
A slight bladder prolapse could cause the need to pee. What I am saying is sometimes a variety of symptoms come from different things and don't add up to one thing. Are you on a hormonal contraception and did you change that in the past year?

@seaweed42

Why do you ask about a change in hormonal contraception? Only asking because I have a lot of these symptoms, and I had a mirena coil put in 11 months ago.

Ask for an H. Pylori test.

CA125 is better used for progress marking not for diagnosis - that’s not its purpose.

You need to go back to your GP and ask why they believe you don’t need a CT scan of your abdomen and pelvis. You need to be clear that in the absence of a diagnosis, you’re concerned about malignancy being missed and they need to explain why imaging beyond a pelvic ultrasound is not indicated.

It may be IBS, but that is a diagnosis of exclusion -other pathologies need to be ruled out first.

IBS as others have said should be diagnosed when everything else has been ruled out. As others have said keep pushing for further scans for ovarian cancer. I would also want a colonoscopy and possibly a laporoscopy as could be endo.

Keep pushing and see a different GP if you come up against a brick wall. I have a chronic health condition and have learnt you have to pick your doctors well and learn to advocate for yourself.

Don't give up.

PS I have IBS (in addition to many other things, yay me!) and you should be getting bowel pains not just back pain that's relieved by going to the loo. You would also have constipation or diarrhoea or alternating between the two. The bloating with IBS is gas and generally painful, again around the tummy but can also be in back and legs. The pain and gas generally starts up after eating. You haven't mentioned ANY of these symptoms.

Thanks for the responses.
Im not constipated or have diarrhea. I have certain food sensitivities but avoid triggers like the plague (cream based or spicy foods). Ibs seems to be the gp to for 'we don't know why you look 6 months pregnant but this is an answer'
Im not on any contraception. Can't handle it. Never been able to.
I've had 5 laparscopic surgeries for endemetriosis over the last 16 years, last being in 2015. If its scar tissue, what can be done?

Im going back to dr next week to ask for further exploratory tests. If they're convinced it's a bowel problem (which it's not) then I want referred. Similarly, if its bladder then I need to see a urologist.

Its patently clear this isn't going anywhere. I weighed myself today and I've lost 4lb in 5 days. I can't eat. There has to be something more to it than fluid. If it's an infection, why hasn't it been caught.

I'm tearing my hair out. It's just miserable at the moment.

Endometriosis plus 5x laparoscopies mean adhesions should be on the doctors’ radar. Does it feel like your bloating/distension may be trapped wind (which can be caused by adhesions)? They can certainly cause bladder dysfunction too, backache etc. Also pain on internal examinations. I have all of this, and more.

Unfortunately adhesive disease is (a) hard to diagnose, as adhesions don’t readily show up on scans, and (b) hard to treat, as any surgical intervention can cause more adhesions and more problems.

Sorry OP for what you are going through. I feel your pain (literally!). I hope you are able to get some answers soon.