Feeling defeated. Feeling full quickly. Ovaries normal. What's going on?

[Wobblyheart]

I am so tired of having no answers to my health issues. Quick recap, 2 years of breathlessness, relentless fatigue, muscle fatigue, abdo bloating. Changes in bowel movement, abdo lump (but GP doesnt seem too concerned), some pains in abdo and lower back, nausea.

The worst is recently I am always feeling too full. And feeling full very quickly. GP doesnt think further tests are justified (and even doesnt want to refer me privately!), I havent had colonoscopy or CT or MRI. Just unltrasound of the adbomen where all was normal.

However my stomach looks 7 months pregnant, and I am feeling sooooo uncomfortably full. No constipation but I feel like there is always something in my bowels. Anyone experienced something similar?

I just want to know what's going on. I am terrified it could be soft tissue sarcoma as these can grow in your abdomen, or colon cancer.

I am tired of not knowing. I want to (hopefully) try for another baby and time is running out as I am going to be 39 soon, but I am not getting anywhere with the GP.

I’d suggest changing your GP. Or go to a Walk In Centre and claim and pain severe.
Then tel them all your other symptoms.
You need to get checked out.

My GPs are quite good tbh, I was even referred to a non-specific cancer pathway but that service turned down the referral because my recent investigations and extensive numerous blood panels are normal.

I am just trying to see if there is a non-scary potential cause of my symptoms, to keep some sanity before I keep on going to try and get investigated

Endometriosis ? Bear in mind this won't usually show on any scans, 100% diagnosis is done via keyhole surgery.

Would it have symptoms of feeling full?

Endometriosis is likely for me, with history of infertility and also I have been diagnosed with adenomyosis earlier this year.

Have you had stool tests done? Qfit, calprotectin.

CA125 level?

I had 3 FIT tests + 2 calprotectins, all normal in the last 6 months. No anemia. Hence, they dont want to refer for colonoscopy. They did ask me to repeat FIT so waiting on results on that one now.

Oh and I am no coleac and no tyroid or autoimmune issues

Normal, as well as normal pelvic US with normal uterus and ovaries.

A friend recently was diagnosed with ovarian cancer. Her CA125 level was just under 1000, she had ascites, tiredness, bloated, feeling full quickly etc.

I’d be somewhat reassured that various tests have come back negative but I can understand your frustration at not getting an answer.

Have you tried an exclusion diet?

Oh I am so sorry to hear that, that is so unfair on anyone :( I wish her the most effective treatment & a recovery.

My CA 125 result was 20.3 ku/L [0 - 35], and all female organs are absolutely normal on ultrasound so I do not think it is the culprit.

After having a tumour on my glute which turned out to be benign thank God, I now know about soft-tissue sarcoma and it is the one that scaries me most. as those can grow in your retroperitoneum...

No, I haven't. I am just so stressed with this and have a toddler to look after with lots of stress at work, I can't take on it right now but I will try when feeling a bit more with it

I just feel like crying out of helplessness

It's probs endo. I have fluid build up in my stomach very uncomfortable. It's a really common condition but you need a laparoscopy done.

@Wobblyheart one of the symptoms of endometriosis is "endobelly", pretty bad bloating, have a read about it. I was diagnosed after many many years, it wouldn't show on any ultrasound even internal. I went private tho.

My friend was diagnosed years before me, she actually had very severe endo with caused some of the internal organs stick together (!!!) - also read on that for more context how this can happen.

Wishing you all the best xx

Have you looked at information about SIBO?

Also did you ask your GP for a copy of your blood tests? You might find some things that they are telling you are normal are scraping at the bottom of the range. If you didn't get a print out you can still ask for one.

I was told adenomyosis can cause that swelling. I look 7 months pregnant when mine flares up