My peritoneal inclusion cyst

As many of you may (or may not) know, my health has been getting progressively worse since October of last year. The inclusion cyst was picked up in 2021 on a CT scan, but at the time it wasn’t as big, so it was left alone. This has been being caused by my scar tissue and my left ovary feeding the cyst. Unfortunately, the hospital who found the cyst never notified my surgeon at the hospital who looks after my case. I went and saw my surgeon with an actual face to face on the 15^th of August, which my husband begged for and managed to get me an appointment.

So, what now?

I spent two weeks prior to my appointment researching inclusion cysts, the outcomes and what the best course of action may be. Yes, I know I typically advise to not touch Dr. Google, but I hadn’t come across anyone with what I have on social media and I wanted to be well prepared and have answers to any questions/statements aimed at me during the consultation.

I am having to advocate for myself because I can’t live a life on some serious pain medication as I am literally sleeping my life away and even with the meds; I am still in a lot of pain. I also can’t drive whilst on them so I have effectively lost any freedom I had as my mobility has become another big issue because even walking causes pain.

My husband came with me to the appointment, his poor face went white when he saw my actual scans, he was also pretty close to loosing his temper because I was seeing the registrar and all he was talking about was my stoma output…

Ben and I were very polite and stated that I needed to see my actual surgeon and that we were there to discuss the rather large cyst and not my stoma output.

I was admitted into hospital back in June due to the pain and multiple blockages I keep experiencing. It was discovered once they had all the scans back that my cyst is still growing, the exudate that my left ovary produces is effectively feeding the cyst and its averaging a 1cm growth rate per menstrual cycle.

We finally got a proper look at Buddy (the cyst), you might think I’m slightly deranged naming the giver of pain, however it’s helping me to mentally cope with every cramp, shooting pain, urination visits, blockage and ever expanding waistline.

Buddy unfortunately decided to adhere himself to my lower stomach, part of my small intestine, and he’s also pushed back my uterus and is comfortably compressing my bladder and holding my uterus down, whilst swallowing my left ovary.

The cyst is currently measuring at 16cm x 18cms, with a 9/10cm depth. Funny story: Ben and I may have measured this out to see how it fitted inside.

Plan on treatment

After sitting there slack-jawed and rather awed at what my insides like to subject me too, we got down to business.

It has been agreed that they are going to ask the radiographer team for a consult to see of there is any clear path to try and aspirate Buddy to give me some temporary relief, we have said that it’s highly unlikely but we are keeping everything crossed as that would be a better stop gap than immediate surgery.

If the radiographer says its not possible to aspirate and given the nature of inclusion cysts are that the sack will fill back up immediately, then it’s a surgical plan and getting me onto the surgical waiting list. My surgeon only completes two surgeries a week as he deals with the lost causes (complex cases) that others refuse to touch.

It’s been stated that surgery recovery will not be easy for me, it will be harder than my proctectomy recovery. To have the cyst removed I will need to have a hysterectomy. I will also possibly wake up with a urostomy due to where the cyst is, which will also mean that my current ileostomy will need to be refashioned, so that could possibly mean another case of post op ileus. It’s risky, very risky, but it’s worth the risk to get back to my otherwise normal self.

Reaching out

I posted up copies of my scans on my social media channels last week and I have been amazed at the support and the reaching out from other women suffering with the same thing as me. I’ve always hoped that by posting my journey, it will help others who are experiencing the same medical issues.

It has also given me hope that others can use my journey to advocate for themselves so that they don’t have to suffer as much pain or a very long winded medical diagnosis to get to the bottom of what may be causing them pain.

As always

Many thanks for reading

Louise | @crohnsfighting Xx