Introducing... Tayla!

I was just 14 years old when I started to experience chronic pain and debilitating symptoms. I remember so clearly the extreme nausea I would suffer night after night, along with the abdominal pain. Every night, like clockwork, the nausea would set in and out came the hot water bottle. My mum would take me to our GP to try and get some answers, but each time we were told the same thing, “In my opinion Tayla is making this up to try and get out of going to school.” I heard the same sentence at every appointment until I was finally diagnosed with IBS (irritable bowel syndrome).

We hoped that we had found the answer that we had been looking for but as years passed, the nausea and pain got worse, the symptoms became more frequent, and I started to experience pain during the day. Around the age of 17, I was referred to a gynaecologist for multiple checks and a laparoscopy, all of which came out with no answers as to what was going on. That’s when those heart-wrenching words were first said to me, “it’s all in your head.”

As the years went by, I was passed from gynae to urology and back to my GP multiple times and the dreaded sentence became more and more frequently said.

During this time, I had my beautiful son and decided to further my education at college, where I studied photography. I found that if I had a busy day on my feet, I would suffer that evening with extreme nausea and abdominal pain. I struggled through my college course, but despite the challenges, I passed and earned myself a place at the best photography university in the UK.

As I had my son to look after, I decided to travel 4 hours every day to university and back home. I loved the busy schedule, but my body didn’t, and it made me suffer almost every day. At this point, I had been experiencing pain, that was “all in my head,” for 6 years and the cycle of being passed around from doctor to doctor continued. I felt like no one believed a word I was saying and I slowly started to give up hope.

I was 23 when I saw a gynaecologist who told me I had Pelvic Congestion Syndrome (PCS), which they had read in my notes from the laparoscopy I had 5 years earlier, but I wasn’t told about.

Pelvic congestion syndrome is a medical condition that causes chronic pelvic pain. The condition is thought to be due to problems with the enlarged veins in your pelvic area.

Unfortunately, I wasn’t given much information about the condition or how to cope with it, but I was ecstatic that I finally had a reason as to why I was experiencing this pain. I went back to my doctor to ask for more information and treatment options for the condition and I was referred to a gynaecologist for more information. I was then told that I didn’t have PCS and it was insinuated that I had self-diagnosed, and they wouldn’t offer me any help with treatment without absolute confirmation that I had PCS.

I decided to go to a private clinic in London that specialised in enlarged veins. They concluded that I did NOT have PCS but they were fairly certain my symptoms were urology related.

My health condition was starting to take a toll on my mental wellbeing. I didn’t know who to turn to or who to trust. Years went by and I felt so alone, scared and angered by the fact that nobody believed I was in pain. I was assessed by a medical psychiatrist who confirmed that my pain was all real. It felt as though a weight had been lifted, although I still had a way to go until I would be diagnosed.

I went through many more procedures, tests and examinations when I was finally seen by a urology consultant. After a general anaesthesia cystoscope with biopsies, I was diagnosed with Interstitial Cystitis at the age of 27. It had taken nearly 14 years to finally get a medical diagnosis!

3 months later, I had gone into full urinary retention, and I was living with a urethral indwelling catheter. I was then diagnosed with Fowlers Syndrome and 2 months later, I had surgery to fit a suprapubic catheter, which I still have now. In the past 2 years I have been diagnosed with multiple health concerns including; Interstitial Cystitis, Fibromyalgia, Fowlers Syndrome, Psoriatic Arthritis and 2 bulging discs in my lower back.

I knew that something was wrong and I’m glad I kept fighting and didn’t give up until I had answers.

I’m no longer able to work due to the pain and other side effects I have from my multiple diagnoses. I’ve gone from the woman with chronic pain, who completed a degree, worked full time as well as being a single mother, to feeling as though my whole life has been taken away from me and my son becoming my young carer.

I’m not sure where my health journey will take me to next, but I know that I feel more positive being able to share my experience with you.

Until next time,

Much love,

Tayla x

@my_catheter_and_me