Update on Buddy the Cyst: My Peritoneal Inclusion Cyst

As most of you are aware, I’ve been dealing with an ever-increasing peritoneal inclusion cyst that’s been rapidly expanding since my diagnosis in August of last year. I’ve been chasing surgical appointments and gynaecology, and I have finally been seen by the whole team and am now awaiting a surgical game plan.

My Gynaecology Appointment

I saw gynae at the end of August, and I have to admit that it was one of the better, more positive appointments. I felt like I was being listened to. My weight gain and pain levels were finally explained, and I now feel like I can manage this until I am booked in for a pre-operative assessment.

The conversation during the appointment was rather frank, with a few tears and a “sod’s law” moment. My cyst was picked up in 2021 when I was admitted previously for an intra-abdominal abscess. It was at my local hospital, and they never notified my relevant MDT team, even though they were liaising with regards to the abscess. Had they treated the cyst then with hormone therapy, it would have shrunk and shrivelled up, and I wouldn’t be where I am now.

Unfortunately, the cyst has nearly tripled in size and currently has a 240 cm square area (it’s rather large). Hormone treatment has been started, but that’s to help with the hormones that are being affected because the cyst has swallowed my one functioning ovary. My period time and then ovulation time are feeding the cyst because I no longer have a large bowel to absorb the fluid produced during that time.

I’ve also seen the radiologist. My cyst has adhered to my lower stomach, small bowel, and my liver, not to mention my rather mangled reproductive system. I can’t have the cyst aspirated or drained thanks to my previous abdominal reconstruction and the biological mesh. There’s too much risk of perforation.

The MDT meeting has finally been held, and I am still awaiting the outcome and decision to decide when I am being booked in for surgery. It’s going to be hard, tricky, and a rather long recovery period because we can’t guarantee what will happen until they’ve actually opened me up to see the level of interference and damage caused both by Buddy and the internal adhesions thanks to my many surgeries.

What Now?

I am still chasing my surgical team; at some point, they will be overly bothered by my polite pestering phone calls and will get me shoehorned in for another emergency appointment.

I am managing my pain with medication, and I’m doing more now. I am used to that amount of pain meds, but everything wipes me out. I’m still struggling with eating as anything too heavy sets off Buddy and my stoma. I’m also still struggling with sitting upright for long periods because gravity is pulling things down and impacting my phantom rectum. Two weeks of the month are a write-off thanks to Mother Nature and then ovulation.

My husband and mum banded together and purchased me a new scooter so I can get out and about with some level of freedom, as even walking causes pain.

I am, however, positive that this will be resolved. I am just having to wait my turn, as there are far sicker and needier patients on surgical waiting lists that need to be sorted.

As always

Many thanks for reading

Louise | @crohnsfighting Xx