Hi Laura, thanks for your response. It's uncanny that you had your gall bladder removed. Me too. My pain started in 2006 and they initially suspected endometriosis but I was then rushed into hospital and diagnosed with gall stones. They removed my gall bladder, only for the pain to continue a couple of months later. Over the years it has progressively got worse and I was eventually back in hospital after suffering a miscarriage in 2012. I can only assume the drop in hormones had a massive effect on my endometriosis. An ultrasound showed I had a 2cm mass on the muscles of my diaphragm, but I then had an MRI which showed nothing. Since then my pain has become more persistent. It always starts about 2 days before my period and is centred around the area where my gallbladder was, but also radiates through to my back and down to the area where my appendix is. Normal things such as sneezing, laughing and coughing are agonising and this has resulted in me having panic attacks as I don't feel that my lungs can expand properly and I therefore struggle to breathe. The pain also affects my sleep and has affected my posture over time as I struggle to stand up straight when I'm in pain. I spend around 3 weeks of every month in discomfort and pain.
I have had 2 lots of surgery to remove endo on my uterus in the past 10 years, but have never really suffered with painful or particularly heavy periods.
I had kind of given up hope as nobody seemed to take me seriously and would look baffled when I described my symptoms. However I found a surgeon near Leeds who had dealt with endo outside of the uterus area, but my insurance company wouldn't pay for him. I have been referred to a gynaecologist near home who has been great. She didn't seem phased by the fact that I appeared to have endo in one of the more unusual areas. She sent me for an MRI which to my surprise showed the location and size of the endometriosis. She has referred me on to a liver/cancer specialist who I am waiting to see.
If you're in pain, don't be put off by he alt professionals telling you that you're ok.I am told that MRI scans don't always show it up. However I am also aware that this Doctor was very specific about where she wanted them to look when they did the scan, which seemed to change the way it was performed. Not sure if this had a bearing?
Hope this helps a bit.