This is a follow up to Tayla’s original story, which you can find here.
“My journey with chronic illnesses started roughly 14 years ago when I was 14 years old. I remember I started to feel incredibly sick in the evenings when it was time to go to bed. This nauseous feeling started to happen every single night, and I couldn’t find a way to help soothe it. After several weeks of this feeling, I started to get tummy aches, but these tummy pains were nothing like I had ever felt before. My parents took me to the doctors/GP several times, but they were told nothing was wrong with me and I was doing it all for attention, mainly because ‘I didn’t want to go to school.’
This carried on for years with the same cycle happening each time. I would get intense pains and get barely any sleep, then I would go to the GP who said there was nothing wrong. This made me feel like I was completely alone as I was so young and only in ninth grade at the time. So, I felt vulnerable as I was going through my mock exams ready for my GCSE’s and was feeling so poorly every single night but having no answers. I was lucky because my parents believed me, and they would fight to make sure I would keep going back to the GP as they could see I was in pain. One time, I did get referred to A&E who kept me in thinking I had appendicitis, which I didn’t. I was discharged, meaning I was back to square one.
As I got older, I would take myself to the GP, who referred me to be seen by a gynecologist. I was under the gynecology team from the age of 16 to the age of roughly 24/25. I had different tests and procedures done to try and find out what the problem was and why I was dealing with this pain. The pain always felt like contractions, which is why I was kept under gynecologist for so long-as it seemed fitting. At one stage during this time, I had a laparoscopically, and I was diagnosed with a condition causing enlarged veins on the womb. I was diagnosed, but I wasn’t told I would be having any treatment nor did I know if I needed medication for it.
For a few years, I just left it and carried on suffering, not knowing exactly why I was dealing with this pain. Eventually I was referred back to gynecology who then told me it was false diagnosis, and I didn’t have any gynecological issues at all. At this point, I was completely deflated. I had absolutely no idea what to do next, and I was taken back to being completely in the dark and having absolutely no idea what was going on with my body and why I was feeling all this pain.
In 2019, I decided to go to a private clinic in London that specialized in enlarged veins all over the body. This seemed like my only option as one minute I was diagnosed with something, then I was told I didn’t have it. I was confused. Anyway, I had tests done at the clinic, and they confirmed that I did NOT have the condition, but they were sure there was something wrong. Based on my symptoms and their test results, they thought it was urology related. The doctor who gave me the false diagnosis took away years of my life. I kept putting up with the pain, as I thought there was no way to help. I could have been going to the hospital and getting closer to being diagnosed, but instead, I just settled for a life in pain.
To be honest, knowing I was told false information regarding my health was soul destroying. I had spent years trying to learn about ‘my’ condition and ways in which I could help relieve the symptoms and make my life a little better. No wonder nothing I tried to do worked. It didn’t work because I was trying to help a condition I didn’t even have! The condition I was diagnosed with also came with fertility complications, and I was in a serious relationship at the time. We would spend hours figuring out if my fertility was affected or not and this obviously caused concerns, especially for my partner.
When I had the conversation with the gynecologist who told me I do not have this condition, I was shocked. I was argumentative and told them I knew I had this condition because I was told I did. I told them that they were the ones who were wrong, but they shot me down instantly. I had been messed around with for so long, I was fed up with being treated this way and just wanted answers. My Nan was with me at this current appointment, and I remember her fuming as she had watched me grow up living in so much pain and just wanted me to be better. When we left the appointment, my Nan was raging and told me to make a private appointment somewhere as the hospital just wasn’t helping me. Because I was told I didn’t have this gynecological condition, the gynecology consultant discharged me. This added more frustration for us both as I was literally back to square 1!
From the beginning of 2019 to the end of 2020, my symptoms all got a lot worse. I was getting recurring urinary tract infections where I needed 6 batches of antibiotics in 6 weeks. I would suffer from all the symptoms you would get with a UTI, but they would be a lot worse. I would get severe kidney/flank pain, and my bladder/abdomen would hurt so badly, it would feel like I was in labor. I would suffer with extreme nausea, I would get bad frequency and urgency to go pee, and I would go to the toilet around 40 times a day. When I needed to urinate, I would get intense pain if I didn’t get to the toilet straight away. Once this pain would come on, then it could take anything from 2 hours to a couple of weeks to start to die down.
My pain and feeling unwell every day was starting to take its toll on my life in general. My relationship eventually broke down. I was struggling to work my full hours at work and even though I was in agony most of the time, I still made sure I went in everyday. I was pushing my body constantly and not giving it a break whatsoever. This pain and its symptoms had total control over my life and no one could see what it was, so it felt like no one believed me. Because I carried on as normal and pushed through every single day, people thought I was playing on it and making it out to be worse than it was. It is hard to put into words how this made me feel, I don’t know how to explain it, but it wasn’t a nice feeling.
My son was getting to an age where he was starting to become more independent which was helpful for me, considering the circumstances. Oscar was born on 1st December 2012 when I was only 18 years old. I remember having 9 months being symptom-free, which I thought was an indication it was gynecologically related. At the time, I was sure it was gynecological as why did my symptoms go but come back again a few weeks after I gave birth to him? I now know having interstitial cystitis as a woman can have a big impact on the reproductive system, but at the time I wouldn’t have known this at all. Oscar’s father and I broke up when Oscar was 6 weeks old, so I became a single mother living with undiagnosed chronic pain. This was a big challenge, as I would barely sleep with my pain but having a newborn isn’t exactly the easiest time to get sleep either. I was lucky because I had my mom’s help, and having 5 children herself, she had lots of practice!
As I got older and the years went on, my pain got worse and the number of hospital admissions increased too. This was difficult for me with a young toddler, as I was having to depend on lots of people to help look after my son. I felt completely guilty as Oscar was being thrown from pillar to post, going from one grandparent to another grandparent, but we had no choice as I was in the hospital, so it was impossible for me to have him. As he got older, starting at the age of around 5/6, Oscar has now become my carer. Oscar helps me with many tasks before school, after school and also on the weekends. He is now officially a young carer, and again, this makes me feel so guilty! I wish our lives were different and he didn’t have to help me and be there to support me, but I literally couldn’t live without him. He is amazing and loves helping me and tells me he wishes he could help me more. He’s just a superstar!
In 2019, when my symptoms were at their worst, I had 6 UTI’s in 6 months. I was lucky enough to see a trainee doctor when I had my 6th urinary tract infection and because he was being extra precautious, he referred me back to urology. At he beginning of the year, I had been referred to urology, where I had a cystoscope, and he looked inside my bladder and told me again IT WAS ALL IN MY HEAD. I was nervous for this new appointment and prayed I didn’t see the same consultant. Luckily enough, I saw someone new who thought I had a condition called trigonitis. In the bladder, there is a triangle section controlled by the female hormone, and it can become inflamed, which causes similar symptoms to mine, and this is what trigonitis is.
December 2019, I was put under general anesthetic to have cells burnt away on this triangle to take all my symptoms away. I had never been so excited to go for an operation before, but I was under the impression I would wake up a new woman with no more pain or symptoms. Unfortunately, when the consultant went into my bladder, it was really inflamed, red, swollen and was covered in ‘lumps.’ I had a biopsy taken while I was under, and when I came round, I was told I didn’t have trigonitis and he would see me in January for the results. I was absolutely gutted. I couldn’t believe what I was being told, and it shattered me.
On January 3, 2020, I had an appointment with my urologist, who told me the biopsy showed I have a condition called interstitial cystitis. He told me he wishes he didn’t have to give me this diagnosis as I am so young and the condition isn’t something nice to live with. Interstitial cystitis is a condition causing the bladder to be red, sore, and inflamed. Because the bladder is inflamed, it causes lots of pain, and even holding any amount of urine can make you severely sick. My bladder was in such a state as I had been left years without a diagnosis, so I didn’t receive the treatment I needed. There is no cure for interstitial cystitis, you can just use treatments to try and suppress the symptoms.
I was put on several medications to help, and I tried a course of bladder instillations which made me worse rather than better. Every treatment available to try, I tried, and each time it failed. I was so mad at all those doctors and consultants who told me it was all in my head and nothing was wrong. I was super mad at the urologist who saw me months prior to this, who also told me it was all in my head! I had gone years without treatment or help with pain management because every single doctor just put me down as an attention seeker.
In March 2020, on 3 separate occasions, I went into urinary retention and was catheterized for a week then trialed without with success before retaining again a week or so later. By April, I was catheterized permanently with a urethral catheter. It was thought the operation I had with the biopsies had irritated my bladder for it to then ‘give up.’ From April to November of the same year, I lived with a urethral indwelling catheter, and it was horrific. It is constantly sore, it gave me constant UTI’s, and I had major abdominal pain and many other nasty symptoms, including affecting my mental health.
In November, I was put to sleep again to have a suprapubic catheter fitted and my indwelling taken away. This is the catheter I still currently have, which is a catheter inserted just about the pubic bone and straight into the bladder. This is much more comfortable but it still causes me lots of issues and pain.
While all of this went on, I was diagnosed with fibromyalgia. This diagnosis answered a few of my concerns about my health. I have extreme fatigue, even when I (rarely) manage a good sleep, I still wake up exhausted and struggle to get through the day. For a 28 year old, my memory is so bad and I forget everything, including when I am mid-conversation and the ‘fibrofog’ makes me forget what I was saying. My whole body aches, my hands and feet are extremely sore and there are many places of my body that hurt 10x more than they should if they get injured. I have to be careful with what I do each day, as doing too much will completely wipe me out the next day.
I had a urodynamics test done in February which measured the flow of the urine and how much urine you pee and how much, if any, stays in the bladder. It also measures how well the abdominal and bladder muscles work. I was diagnosed with Fowler’s Syndrome which is where the abdominal muscles work to help you go pee, but the bladder muscle does not. This is the answer to why I kept going into retention, and it was a relief to know what was going on. But, it was another incurable diagnosis, meaning my bladder will not work on its own again.
At the age of 28, I have 3 incurable diagnoses, and I still have a long way to go with other tests being done to check more conditions and also to figure out the next step for me and my health. Everything is completely upside down, and at this point I have no idea what is going to happen, but all I can do is wait.
I have an amazing 9-year-old son who is my carer and helps me with many jobs around the house. He is so special and the most caring and compassionate young man, and he helps me get through my day to day life! He pushes me to get through the next day, week and month! Oscar helps with the cleaning: he washes up, puts clothes in and out of the washing machine, sweeps, dusts, vacuums and any other odd jobs I struggle to do. He also helps me with brining my medications to me. He helps sort my leg and night bags, which then includes helping me get dressed and ready for bed, as this is a big job.
He does get worried about me, and he knows how sick I get and how I am on a daily basis. We have sat down and talked about my conditions, so he knows exactly what is happening. We have done Instagram photos and interviews where we have talked to one another about my conditions and how our life has changed very recently, especially in the last year. I also use my Instagram page to share my journey and my story to others, hoping there is someone with the same symptoms as me being told it’s in their head who can use me as an example to gain answers! If I could get just 1 person diagnosed, my job would be complete. I am a body positivity influencer and a chronic illness advocate where I show men and women they should love themselves and not be afraid to be the real them. Wear those clothes you have never worn and be confident and comfortable in the skin that you’re in!
I started my Instagram page years ago but only started to use it for health purposes in the beginning of 2021. I decided I wanted to share my story because I didn’t want anyone else to go through what I had gone through. Even though the average time to get diagnosed with IC is 4 years, that’s so much better than the 13/14 years it took me. I want people to see my symptoms and recognize it may be what’s going on with them, and this would push them to make an appointment. I also started it because I really wanted to make awareness for catheter users. When you think of a catheter, you think of someone old, and I have never known a person to have a catheter who I have met in person.
All 3 of my conditions are conditions not many people have heard of, and there aren’t many people out there who have a catheter on display. When I had my catheter, I realized I had never seen someone with one before, which is weird. I decided I would raise awareness for my conditions and also as a catheter user. My Instagram is there to help educate and make people aware of these conditions, but it’s also been a way for me to come to terms with living a life with these chronic conditions. I felt like my life was over when I had these diagnoses and when I had a catheter, but when I started to share awareness about my life, it gave me a sense of joy. By sharing my experience and in turn speaking to other suffers, it made me feel like my life wasn’t over.
Living with any chronic illness is hard and can be difficult for anyone of any age to come to terms with. But by sharing photographs of my catheter and receiving all positive comments, it gave me confidence and other people made me feel good about myself when I didn’t. I will always have these conditions, and I will always have the pain and symptoms associated with them, but I will not let them completely beat me or define me as a person. I have been though more than most people should ever go through, and I am only 28. But I hope because I have been through this, and by using social media to tell my story, others won’t have to go through everything I did/have and still do.
I now realize even though my illnesses aren’t curable and they are life changing, it doesn’t mean my life is terrible. There is always something to be grateful for, and there is always a way to find the positive in any situation. Because I now feel this way, I want to help others to feel confident and comfortable. Especially other catheter users who are young and feel as though they have no other options in life and it’s completely over.
I am thankful my conditions are not life threatening, although they are chronic life conditions. And I am thankful I have an amazing 9-year-old son who is the most gorgeous, clever, and amazing person. I know I still have lots to go through, but staying positive is key and being thankful for everything in life helps get through life that little bit easier.”
This story was submitted to Love What Matters by Tayla Collison from Kings Lynn, Norfolk UK. Follow her on Instagram and Youtube. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
Read more stories from chronic illness warriors here:
‘She’s just a nervous child.’ The words still burn. I was 13, about to start high school. But I was different. My life was consumed with excruciating pain, diarrhea, and the toilet.’: Woman recounts her struggle with chronic illness
‘When you see me in a handicapped parking spot, you roll your eyes. My husband explains, ‘She doesn’t get better from this. She ultimately dies from it.’: Woman with multiple chronic illnesses urges ‘not all disabilities are visible’
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