Look for help on what to do

Hi, I’m a 20-year-old female, and I’ve been struggling with ongoing health issues since July 2024. It started with severe lower back pain and urinary tract infection (UTI) symptoms, which progressed into repeated kidney infections. I was back and forth to my GP almost every month, and each time I was prescribed antibiotics. They would sometimes ease things for a short while, but the pain and symptoms always returned.

Over time, my symptoms worsened — I began vomiting frequently, lost a significant amount of weight (which is unusual for me as I have PCOS and have always found it difficult to lose weight), and developed a poor appetite. Eating often makes me feel nauseous, sweaty, or causes me to vomit. My GP did some blood tests and a urine sample, but I never received any follow-up, so I tried to carry on as best I could.

In May 2025, the pain became unbearable — I blacked out and couldn’t stand. I went to A&E, where I had bloods, a urine test, and a CT scan. The scan showed a 5cm cyst, though at the time, the doctors weren’t sure what it was. I was admitted to hospital for a week and seen by several consultants, each with different opinions. At first, they thought it might be an ovarian cyst, but later decided it was too high up to be ovarian. Eventually, I was told it was likely a benign cyst filled with fluid and was discharged with pain medication.

Two weeks later, the pain and sickness returned severely — I couldn’t even keep water down. I went back to A&E and was seen by a surgical assessment unit (SAU) doctor, who reviewed my scan and told me the cyst had grown to 7.5cm. He said he saw some concerning features and believed it could possibly be a tumour. I was referred to a colorectal consultant, who would be performing my surgery.

She explained that I have a retroperitoneal cyst located behind my kidney, in a very risky area — close to major blood vessels, important nerve endings that run down my legs, and near the tubes connected to my bladder, which could affect continence. She said that if it grows larger, there’s a risk it could become malignant, although at present they can’t be sure. They also can’t biopsy it safely due to its location and the risk of rupture or damage to nearby structures.

However, I was told they don’t believe this cyst is the cause of my symptoms, and that it was likely an accidental finding — which I found frustrating, as many cases of retroperitoneal cysts I’ve read about have caused symptoms similar to mine. I was told surgery would take place within 6–8 months (this was in July 2025) and to contact the colorectal ward if my symptoms worsened.

Now, several months later, my symptoms have definitely worsened. I’m still in constant pain, I can’t sleep properly, and my legs ache all the time. I’m now also having bladder problems — I often get sudden urges to urinate and struggle to hold it. If I can’t go straight away, I feel sick and dizzy.

I’m scared, in constant discomfort, and feel really lost about what to do next. I’d be so grateful if anyone has had a similar experience or could offer advice on how to get the right help or push for a review sooner.

Thank you for taking the time to read this.