Peritoneal Inclusion Cysts & Liver MRIs??

Just when you thought things could not get any weirder then came the cyst.

Its pretty common for every scan I have to find something else and its pretty common for anyone of my age group to have random finds on their scans, but when one follows another and they become known, then we have to make decisions and deal with things.

So, there is a cystic type structure adjacent and just behind my liver which appears to be a benign cyst but they are not entirely sure. Its gradually growing in size, only a bout 2-3mm in 3 months but that is enough to be curious about what it is and why its there. They believe its a Peritoneal inclusion cyst either caused my my Endometriosis, my previously existing Ectopic Ovary or scar tissue from my surgery.

Who would of though removing what could turn into something sinister would cause something that might turn into something sinister.

So Im off for a Liver MRI with contrast on Tuesday coming to find out if we can get to it or its staying put. While the thought of someone pushing my liver around to disect and drain my cyst and then hoping for the best scares the crap out of me I now know thats the reason for some of my rib and back pain after pushing on it sent me into a tail-spin. I wonder what else they will find on this adventure?

Watch this space for the next installment....

Facing a world without food

I have never felt better than what I have when I stopped eating altogether. I never wanted food to be the enemy but its starting to feel that way.

I was shocked to think all the time I have been trying to navigate my way through the fodmap diet and unaware of my fructose malabsorption and my IMO I was unknowingly contributing to my world of pain. 

Surviving only on E028s and Hydralytes Ive been very surprised at how great I feel, how much energy I have and I am sleeping better. I could of done this years ago. The biggest concern we had was maintaining weight but my regular consumption of plant-based chocolate which is my stress-eating go to, has meant that even thought it sets of my GERD its helped me to stay above 50 kgs even while my drinks ran out and I waited for my next dietician appointment.

My dietician is the most caring, compassionate and smart person I have ever met and even though I have seen a few, she is indeed my favourite. I be understood is everything. She understands my intense restriction, she understands my dear of eating and she understands why I need to keep things like chocolate and coffee in my life... as they can't take it all just yet. If my nodules get worse and my osephageous affected, it might be time, but not just yet.

We have decided to carry on as we are until we get more answers about the rest of my new discoveries. She upped my E028s to 3-4 a day and now im going to try little snacks of my soluble foods like eggs, rice, bananas etc. Only if I feel like eating solids otherwise Im solely on a liquid diet as I enjoy other drinks like Kombucha and Soda & Lime. I even found a 0% alcohol beer that didnt send me off the deep end... so if I want to go out, I can feel that little bit more normal.

Whilst it doesnt feel normal for the family, its working for me. I have to keep an eye on my kidney whilst I loose too many fluids and esophageous for now eating all my no-no foods but its sounding pretty good that Im not having to be tube fed, so I need to lay off the chocolate and coffee and find a better way of dealing with my stress in the meantime. 

A future with Vascular Compression Syndromes...

I met with my 15th specialist. This time a Vascular Surgeon that specialises in transplant surgery. 

Can you even believe that, that is 5 more specialists than 1-a-year for the past 10 years of this blog, and my journey.

He was a very nice man that seemed to find my results a bit challenging as even though he has probably seen it all, he probably hasn't seen it all happening to the one person. He called me 'complex', as they all do. I've decided that is my next tattoo.

We straight away got into my reason for meeting with him today and that was to discuss the possibility I have a specific compression called MALS. It turns out I do not. I have what he thinks is abnormal stroma (connective tissue holding my organs in place) and blames my Ehlers-Danlos Syndrome for growing that way. He believes that its a stenosis that will continue to possibly occlude eventually and there is no way of fixing it. We have to just watch out for aneurym and see what my body does in the way of bridging or redirecting, and if Im symptomatic at all once it happens. I have never in my life disliked a 'wait and see' more but when he said operating on me would be a mess and more than likely make it worse or me more symptomatic, I agreed that a wait and see approach was a much safer option. I brought up the sonagraphers opinions on my left ovarian vein and my pelvic congestion syndrome and he immediately went to my CT / MRI with contrast that I have had previously done and there he pointed out a clear indication of Nutcraker Syndrome and said thats most likely causing my varicosies in my pelvis. Again, watch for symptoms. As I more than likely have the trificta we will watch out for addition signs in my legs of May-Thurner Syndrome and that will probably be diagnosed in due course. I will book a separate appointment about that at a later date.

So there you have it. Is it the answer to my GI pain? He doesn't think so. Is it a contributor to my other symptoms? Pain, posture, circulation, breathing, POTS? We will see. Most worried really about the NCS affecting the artery of my only kidney so following up on that one in late July with my OB/GYN and possibily with my Uroligist. Lets hope I dont add a Nephrologist to that list.

I visited my GP to go through the results and she was a little surprised but not surprised at the same time, this has been as much of a journey for her. We decided without a diagnosis of MALS, we would call it 'celiac artery stenosis'... and list them as VCS on my surgery or medical forms moving forward.

"VCS - Vascular compression syndromes are a group of conditions that occur when a person's blood vessels are under abnormal pressure, limiting the size of the blood vessel and the amount of blood that flows through it."

So more updates to come once I navigate this new area of my anatomy. I'm now part of another rare disorder group and many of them are part of my EDS community but we each have our own battles and stories, so meeting with some soon to find out how they are getting on.

Onwards and upwards.