As I sit here being attacked by my 10 week old kitten Ember and writing this blog post, I thought it was about time that I opened up and gave you a breakdown of my personal story and journey with chronic illness.
Firstly hello and thank you for being here! If you follow me on social media you'll know that I share quite a lot about myself on there, but for anyone new here this post will give you an insight into exactly what I've been through and maybe even something to relate to. Secondly I am going to be totally honest and bare all... Well not quite that much but you catch my drift. Here goes!
At the age of 19, I first started realising something wasn't quite right. I remember having my first job after college which I hated. I was working in a Toy shop as I thought it would be fun! I was quite the naive teenager back then as it was anything but. I remember struggling to get out of bed to even go. Not due to the lack of motivation or because I was 'lazy' like my ex partner and his family told me back then, but because my whole body, especially my legs ached like I had just run the London Marathon the previous day. I was so exhausted.
This continues on to present day, fatigue. It's something that fluctuates for me but I've never been able to overcome. I run around like crazy when I'm able to even if it does leave me burnt out for a few days after as I've never truly accepted it. It beating me I mean and feeling like I can't have fun. Joy is so important to focus on and worrying about what's coming next just doesn't help anyone. That fear cycle is a dangerous thing.
Throughout my early twenties more and more symptoms and difficulties were popping up out of nowhere like a jack in the box. I often wonder if the narcissistic abuse I was facing at the time had a big impact on the way I was feeling. I couldn’t go a few months without a UTI, I was becoming sensitive and intolerant to so many foods but didn’t yet know what was causing the way I was feeling. I had to nap after most meals at just 21 years old. By 22 I was fainting at work with excruciating stomach pain. I had had stomach aches before and food poisoning but this was something else. This was a totally new and not welcomed level of pain.
This is when I felt truly alone. Everything was getting too much and I had no support around me to be able to help myself. I broke away from a horrible relationship and went back to my family home. This is when I began investigating what could possibly be happening and looking for answers. I decided to go private for food allergy tests which lead to me eliminating a lot from my diet. I thought my main culprit was Lactose at the time so I switched to soya milk. A BIG NO NO for what my future 32 year old self was going to be made aware of later on..
At 24 I started Innabox! This enabled me to work part time and attempt to get Innabox off of the ground. I was on fire… Not because I was doing well, instead because of how my bladder and downstairs felt. It got so unbearable with bleeding from constant UTIs that again, I decided to go private. My parents very much paid for this treatment as I was broke. That’s also how my body felt! Finding a new relationship with Stevie (my current partner) at this time was extremely challenging too. We had been dating for 6-8 months roughly and I always joke that I roped him in as a pretty healthy girl, keeping my illness to myself. To be totally honest, I always brushed things under the rug like they weren’t important as I hadn’t learned to love and care for myself.. I thought I was invincible.
The surgery I had on my bladder did absolutely zero. It was torture waiting for it as I couldn’t drink water for many hours before. This ws the only thing that helped to subside the burning slightly. I was crying from the pain, praying that this would help. But it was a big fat nope. What now? I had little hope at this point and suffered for 6 more long years before finding any kind of help. Inbetween scrolling through FB groups for answers and working on Innabox, I was also trying to find out what the root of my stomach issues were as the fainting hadn’t stopped after cutting the dairy. Everything seemed to set me off yet somehow I had convinced myself that I was fine and it was just IBS. It didn’t help that doctors wouldn’t listen to me at all and told me nothing would help me.
I tried the low fodmap diet for IBS and lived on this for years. But still it wasn’t enough. It helped the bloating at first and I was much less inflamed for a little while, but this didn’t last long. Also nobody talks about how extremely overwhelming changing your diet can be. Especially for someone who grew up on pure junk food. I didn’t know what a fresh meal was until I was around 25 years old! Coming from East London with a chicken and chip shop and off license on every corner, I had takeaways, sweets, cakes, fizzy drinks etc every day of my life until I knew better! Microwave meals were also a signature in my house.
My childhood is something that I’m not ready to talk about but I carry a lot of trauma from it. One day I’d like to go into more details but now isn’t the right time as I am working on my healing and letting go. Leaving the past behind me once I’ve journalled about those times I felt unsafe and lived in constant fight or flight. To some extent I still do but there’s more of my story to cover before we get onto present day!
Being self employed gave me the freedom to rest when I most needed to, it was by far the best thing I ever did. I originally designed funny puns, often involving cats and bums. (I know, I don’t know how it started really.) Anything that made myself smile and I wanted to bring that to others too. Whilst working with a nutritionist, I could feel my gut health slowly improving. I came off the pill at this time too, roughly around 28 years old.
With some things improving, I could focus on trying to figure out my bladder issues! Which at the age of 30, I finally managed to get some answers! Coming off of the pill gave me horrendous periods. I always had issues but not to this extent. It kicked my bowels up even worse. Like fireworks were going off inside me! So luckily at this point I had found a professor called James Malone Lee to help with the bladder issues. Turns out I had a chronic UTI bladder infection! I seriously could have cried when I found him and his son. His son Matthew confirmed I had an embedded infection and put me on medication straight away.
HOORAY!! However.. This treatment was private. I was paying out so much for 3 whole years. I was taking 6-9 antibiotics a day with hiprex. Often a combo on antibiotics. This majorly helped my smptoms after the first year and a half in treatment. I was so relieved!! But unfortunately with one thing getting better again, I got smacked in the face with my endometriosis diagnosis! (This treatment is available on the NHS now BUT it’s not easy to get prescribed.)
A month before my 32nd Birthday I went to see yet another private specialist as I never had any luck with the NHS. I was shy and hated confrontation so I had no chance. This is not the case now, I take no shizz haha. But let’s get back to my endo diagnosis and how it happened. It was actually an online friend who mentioned endometriosis to me for me to look into it. As soon as I saw a list of all of the symptoms, I just knew. But once again the NHS fobbed me off. This was just before covid so even with waiting times not being half as long, I still had no hope.
I ended up at Harley Street again, a couple of grand lighter with a new diagnosis and an extremely heavy heart. I sunk. That’s how I would explain it. I was crushed. I knew something was wrong but to hear the extent of what I had to face and what was really going on was soul destroying. My first appointment was with Dr Denis Tsepov who was pretty certain I had endo as soon as he did an internal examination. I had to wait a week to confirm via MRI which showed the horrendous damage it had caused.
I went into this blind… Not knowing how serious it could get or what treatment options were available. To be told that I needed extensive, dangerous surgery and would probably end up with a stoma bag just broke me. I went into a depression. I don’t think I came out of it until my surgery recovery. But this didn’t happen for another 18 months after that as I had to find someone capable of carrying out this surgery. I had to know I was in safe hands. Private would have cost me £30,000!! This didn’t include any after care, follow ups etc.
A few months later after my diagnosis I managed to find my surgeon, Mr Shaheen Khazali. He took me on instantly and he was NHS based aswell as private. I was super lucky to get him as he is now private care only. The wait for surgery seemed like forever, fighting hundreds of symptoms daily and just feeling lost. As well as extremely shit scared of what I had to face. Bowel surgery can have many complications and I may have had to learn how to live with a stoma and was practicing with kits provided by my nurses. I had a cancelled surgery a few months before my actual surgery date which added to more trauma. Going through bowel prep, covid tests, fasting, anxiety, TWICE.
Anyway, the big day had come. SURGERY DAY. The day that could potentially change my life, give me my life back. Yes endometriosis is for life but this was the best chance I had at regaining ME! I hadn’t felt like myself in so long. Sitting in one of the best private Hospitals in London (Lister - Chelsea) my heart was racing for hours but I had hope again. Everything was beginning to work out, including bagging the private hospital which wasn’t part of the plan and still on my NHS treatment. It just happened that both Mr K and my bowel surgeon were avialable together on that day. I deserved that fancy treatment after what I had been through right? Haha!
I woke up 4.5 hours later and looked at the person sitting next to me. They were typing up my notes. At the same time, I looked down at my stomach to check for the stoma and the nurse said “They managed to avoid the stoma bag.” I literally cried with relief. But that also filled me with dread as now I had to hope and pray that my bowel resection didn’t leak and cause sepsis. The next 4 days were crucial to my healing and wether or not I would go home on time 4 days later.
I was on top of the world for the next 24 hours. I had had the surgery, I was comfy in my bed on the drugs and being looked after like a Queen. A huge weight had lifted. Then came the complications! No surgery or healing is straight forward so I am happy that my stay in hospital was mostly straight forward. Other than the multiple fainting episodes, catheter being taken out too soon, using bed pans and needing my ovary suspensions out way before they were ready.
Endo was found on my left ovary, right ovary, pouch of douglas was ebliterated, my bowels hence the resection, my bladder and cervix which I had partially removed. It was a mess in there but I am so thankful and forever grateful to Mr K. He’s an amazing man. My notes were very thorough and the follow up care for the first few months was great. Any questions I had were answered right away. There are so many things not mentioned when you’re recovering from surgery so it was good to have them at the end of the phone.
All in all, recovery from such a huge surgery took me longer than I expected. I felt good from the fith month on but still had to be careful. I was running around again and eating everything I wanted! It felt incredible. It didn’t last long as surgery doesn’t solve everything. The boost lasted for a few months. It’s like a reset. Even my vision was clearer! But let’s go through what surgery really did do for me and what I still deal with...
I thought I had beat the chronic UTI after surgery and came off of antibiotics and treatment. But I haven’t, it’s still here and I’m gutted. But the main take away from surgery that has improved the most is definitely my bowels. I remain gluten, dairy and refined sugar free but I don’t have to worry about eating anymore. I forget how easy it is to eat a meal without thinking about fainting in awful pain. Or worrying about my periods. Most have been pretty good compared! Here’s a list of what I am still battling:
UTIs/Burning vaginal pain
IBS/SIBO/Food intolerances
Heavy periods
Hot flushes
Acne
Hormone imbalances
Painful intercourse
Thrush
Blurry vision
Brain fog and memory loss
Fatigue
Oily skin and hair
Inflammation
Bloating
As you can see, or can't see as they are invisible illnesses, I still have a lot of work to do to try and help myself. A chronic illness doesn’t just go away with surgery. I tried pelvic floor help, moved home away from toxic people, I’m working on brain rewiring plus the medical medium food protocols. Which I know aren’t for everyone! But after trying keto, low fodmap etc with none of them helping, I need to focus on gut health. This is my path and what feels right for me. I am hoping in turn this will help everyting else but we shall see. I am a work in progress!
I hope to get back to my teenage self one day (or near enough). I can never give up hope of playing sports again, of running again, of travelling again. I used to tell myself that I manifested this illness from all the times I tried to escape the unsafe feeling and pretended to be sick. How crazy is that? If anybody else told me that, someone would need to hold me back from giving them a swift telling off!! So never think that your illness is your fault. Because the sad thing is that it can happen to anyone.
If you have any questions about this post, please reach out! I share my story and my work to help others.
Love to each and every spoonie out there! Plus a big shout out to everyone that helped me within the endo and CUTI community <3
Nikky xx
10 random facts about me:
- I once fractured my arm playing Power Rangers (don't try this at home).
- My favourite movies are Gremlins 1 and Bridesmaids.
- My favourite computer game will always be Mario and Animal Crossing
- I once played Oliver in a play and convinced everyone in my primary school that I was going to be an actress. (Waaaah? My introvertedness soon came out.)
- My favourite music/bands are Paramore, MJ, Imagine Dragons, The 1975, Good Charlotte, Avril Lavigne, Willow and many more!
- I am a crazy cat lady and once had 8 cats at a time in the family home. I now have two babies called Teddy (9) and Ember (10 weeks).
- Most of my tattoos are cat related (of course).
- I once chased Good Charlotte's car just to meet them (I was 16 tbf).
- Pretty good at playing football for a girl. Big tomboy.
- I believe that the universe has my back and I love all things spiritual!